Legacy of Love: Jayme’s Fund For Social Justice

In early 2013 I had the opportunity to work with a small non-profit in New Hampshire.  Working with the artwork of a young girl who died tragically, I got to know her mother, Caren.  Caren thought that she wanted to change the website she had had for the 10 years since her daughter’s death.   Unfortunately,  attempting to change the website was too great an emotional challenge for her.

I created this video for Jayme’s Fund for Social Justice as well as a prototype of a new website that can be seen here.

 

Beginnings and Endings

Kathleen Hoffman, PhD:

April 1st remembrance

Originally posted on Health Communications and Health Advocacy:

“Often when you think you’re at the end of something, you’re at the beginning of something else.  I’ve felt that many times.  My hope for all of us is that “the miles we go before we sleep” will be filled with all the feelings that come from deep caring-delight, sadness, joy, wisdom-and that in all the endings of our life, we will be able to see the new beginnings.” Fred Rogers

I know it is hard to believe that a grown woman would feel so connected to “Mr. Rogers’ Neighborhood.”  Actually I wasn’t all that big a fan of it as I was growing up.  But I found its calm and quiet atmosphere a welcome relief from the programs that my boy and I could have watched together when he was little.

Today I turn to Mr. Rogers again.  April Fool’s Day 2012 was a day of lemons for my…

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Facepalm

Kathleen Hoffman, PhD:

Please look at the list of to-do’s in this blog post!

Originally posted on The Sarcastic Boob:

You all know my feelings about Susan G. Komen (see my commentary here , here , and here ).  And it has always been puzzling to me that a woman whose sister supposedly died of breast cancer that metastasized would establish an organization that hardly mentions it and funds research for it far less than other organizations.

Komen (as an organization) possesses an innate hubris and avarice that allows them to treat those who infringe on their copyright with very heavy hands.  It has over 200 trademarks all of which are watched over and protected by a well paid legal counsel. Komen thinks nothing of strong-arming charities for use of the words “for the cure.”  In 2010, Komen legal counsel, Jonathan Blum said

“It’s never our goal to shut down a nonprofit,” he said, “and we try very hard to be reasonable, but it’s still our obligation to make sure…

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Lumley’s Lucky Day

In second grade my son Daniel had an assignment, to write and illustrate a story. He was worried about it so we went to the North Carolina Zoo for inspiration. Daniel wanted to photograph the animals and borrowed Dad’s phone. At the alligators’ habitat, he leaned in to get a good picture and dropped the phone. He was devastated. We tried to comfort him and joke about what was happening in the alligator habitat. Lumley’s Lucky Day was born. Mom spent some time revising and creating illustrations in Adobe Photoshop and after a few years, Lumley’s Lucky Day has been published on Kindle. Please take a look and enjoy it! Share this with your friends.

Patient Advocate–Pat Mastors

Empowered Through Loss

Creating A Patient Advocate

patmastors1patient advocatePat Mastors’, patient advocate, “medical awakening” came with the tragic loss of her father. “My father, an otherwise healthy 76-year-old, fell down stairs at home and fractured vertebra in the neck. Surgery to fix it went well. But his intestines burst two days post-op. Later we learned it was from C.diff.”

Clostridium difficile or C. diff is a bacterial infection that “is most commonly associated with health care, occurring in hospitals and other health care facilities where a much higher percentage of people carry the bacteria,” according to Mayo Clinic’s website. It is easily passed along via spores that last on surfaces for weeks or even months.

Because of this hospital-acquired infection, Pat’s father survived only six months. “As a reporter, I felt people needed to know how easily unintended harm happens in even the best hospitals. Plus as his advocate and only daughter, I wondered if I’d known more, could I have made difference? I’ve been working on it ever since.”

Simple Communication is Needed

Having been a television newscaster taught Pat “efficient, simple communication of critical information empowers people to make informed choices.” Applied to healthcare she believes it transformative: “cultivates a more responsive and transparent system.” Her journalist’s training opens her mind to the many sides of any story, “I have spent years doing my best to understand the entire landscape and all the players in it. Nothing’s simple in healthcare!”

What You Need To Know Before Going Into the Hospital

Through her patient advocate research Pat’s gleaned five of the most important things someone going into the hospital need to know:

1) The third leading cause of death in the US is errors and infections. “Up to 440,000 are killed per year.”
2) “Ask your surgeon, “How many of these have you done? What’s the infection/complication rate? You learn a lot by how s/he responds.”
3) “Bring an advocate! Don’t go it alone.” Pat recommends a firm, non-adversarial professional who knows how to deal with people.
4) Understand that shift changes and “hand-offs” to other staff, are the time when errors happen—“things slip through the cracks.”
5) “Take notes, speak up if you see disconnects.”

Have Your Family With You In Hospital

Knowledge is power, and Pat knows firsthand that this is the case. Suddenly her daughter, who had walked the Appalachian Trail, was in the hospital. Jessica came down with a rare paralyzing nerve disorder called Guillain-Barré syndrome (GBS). In GBS a person’s own immune system damages their nerve cells, causing muscle weakness and sometimes paralysis. “The challenge was to get the best from modern medicine, AND the best HUMAN investment from us, clinicians, input from other advocates, research, nutrition, etc.” Pat and the whole family were at Jessica’s bedside. “With shift changes and handoffs, we (family) were the only constant. We helped keep clinicians’ focused on her.”

Her family’s presence helped. Pat tells the story of one of many interactions which show the difference that can be achieved by having the family present. Jessica was having a radiological test and her pain medicine was wearing off. Pat asked the technician about getting transport back to Jessica’s room. She was told it would take as long as it takes for Transport to arrive. “I asked “how long before Transport gets here”?” The Chief of Radiology overheard the “I don’t know” answer and he himself wheeled the gurney! “This does not happen if you are not there to look them in the eye….” Pat says. “All doctors and nurses feel good when they are being human and kind with you… There are just so many distractions, WE FAMILY members’ presence reminds them.”

With the efforts of all the players, (physicians, nurses, family) focused on Jessica, she was out of the hospital significantly earlier than projected. “In 7 days (instead of 23), fully recovered in 3 months (instead of 6-12),” Pat states.

The Patient Pod

ABOUT-Patient-Pod-image-alone-102.5-kb Patient AdovcateMaking a difference for others is part of Pat’s advocacy. She created the Patient Pod. “I created it to bring patients hand hygiene, access to personal items, plus a way to take and store notes, post message (like “patient white board”) and keep discharge stuff organized. I wanted patients to have autonomy, dignity, things comforting and familiar, in a place where nothing you touch is yours.” In addition, the Patient Pod includes a plastic sleeve for the TV remote control, one of the dirtiest items in a patient’s room.

Design to Survive

She is also writing. Her recent book as a patient advocate,Design to Survive, proposes the IKEA model for theDTS-New-Cover Patient Advocate healthcare setting. She shows how a “model of partnership, savings and shared responsibility serves both provider and consumers worldwide.” As her table of contents points out:

“If IKEA designed health care…

1. We would always feel welcome

2. Instructions would be understandable to a 5th grader

3. A one-stop website would help us learn, connect, and plan

4. We’d get tools for success when we walked in the door

5. We customers would have to roll up our sleeves and help

6. Prices would be clearly marked…and we’d pay our own bills

7. The team that serves us would act more team-like

8. Hackers (the good kind) would thrive

9. It would live to innovate.”

Pat believes that simplicity saves lives and in that simplicity the patient’s voice is essential. “Patients/consumers need to speak up where appropriate, take time to give feedback, good and bad. Doctors, nurses are under the gun for performance: when they go the extra mile, write their bosses! If care’s poor, tell that, too.”

Pat Needs Your Help to Help Others

Presently Pat is looking for funding to educate more patient advocates, “We need more opportunities for the patients voice to be integrated into all aspects of care. The problem is, who are ‘Patient Advocates’? We’re self-defined, like ‘travelers.’” She believes that Patient Advocates need more professional development opportunities “so we can bring not just stories, but tangible and actionable take-aways to our audiences.” If you have any ideas for funding this endeavor, please comment on this blog post or at Pat’s Blog.

This post was developed from the transcript of #HCHLITSS chat December 19.

First published on #HCHLITSS Health Communication Health Literacy and Social Sciences.

2013 To 2014: Rekindle Another’s Spirit

In everyone’s life, at some time, our inner fire goes out.  It is then burst into flame by an encounter with another human being.  We should all be thankful for those people who rekindle the inner spirit.  ~Albert Schweitzer

Blogging for a company, Medivizor, and writing for the Health Communication, Health Literacy and Social Science Tweetchat #HCHLITSS website has kept me so busy that my own website has seemed adrift.  Yet life has rushed along…filled with helping our little family settle into a new place! A move from North Carolina to Massachusetts…Gosh,  I’m now listening to predictions of snow…at least 6 inches…and I feel fine!

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You can always tell a real friend:  when you’ve made a fool of yourself he doesn’t feel you’ve done a permanent job.  ~Laurence J. Peter

There have been some lonely times but my real friends have decided that I’m not such a fool as they may have thought, but never voiced.

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I never had a policy; I have just tried to do my very best each and every day.  ~Abraham Lincoln

This is all any of us can do…to do our very best and I think reaffirming this at the end of one year and the beginning of the other is an important ritual that I begin now.

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Education is the most powerful weapon which you can use to change the world. ~Nelson Mandela

I am ever excited by the idea of always being a student, asking questions and learning.  I believe that any effort I can make to educate others or to include them in my continuous “studenthood” is worthwhile.

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I learned that courage was not the absence of fear, but the triumph over it.  The brave man is not he who does not feel afraid, but he who conquers that fear. -Nelson Mandela

Fear is ever present for anyone who is looking for employment, or relocating, or caregiving or connecting with and/or loving others.  I pray that this coming year I can recognize fear and conquer it.

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Happy New Year 2014!

 

Infographic

When Patients Share Internet Health Information With Their Physicians

This is an infographic that I created to describe a short “survey” that I conducted for a week in October, 2013 while working for Medivizor.com. The full description of the survey is found here: How Patients Discuss Internet Health Information With Their Doctors.Infographicpatientmaybe2

Halloween and Domestic Violence Awareness Month

vintage-costumes-1953Lesley Pratt Bannatyne, explains that Halloween has changed. Prior to the 1970s, costumes for this children’s holiday featured astronauts, doctors, firefighters and nurses, allowing children to dress as heroes or people they aspired to become. Or they were of clowns, cats and dogs.  Then in 1968, the movie industry cancelled the production code that stopped the use of obscene imagery. More and more graphic movies and more horror movies resulted including the 1978 release of the film Halloween. It was the first time that Halloween had been directly equated with horror cinema, says Bannatyne, and the association has stuck ever since.

After October 31st, Halloween, has come and gone, may be a perfect time to post on Domestic Violence Awareness Month. What does this celebration have to do with Domestic Violence Awareness? Why is there a need for awareness? Perhaps because we are often unaware that our neighbors, friends, family are living their daily lives in the fear and horror that Halloween seems to celebrate.

The Health Communication, Health Literacy and Social Sciences asked participants to share their insights on Domestic Violence.

Dr. Gia Sison thinks that “Awareness is key to having a major impact and long term effect on domestic violence. Along with awareness we need the victims to start speaking up, to empower them to make a stand against it “

Annete McKinnon, patient support advocate, believes this awareness month is needed because “Domestic Violence isn’t always evident. “ A friend was being physically abused and yet, “I believed my friend when she said she kept having accidents.” Andrew Lopez a nurse sees awareness of domestic violence as crucial, “Domestic Violence, Intimate Partner Violence is filling up Emergency Departments in a vicious cycle….Unless awareness is raised of Domestic Violence, the vicious cycle will repeat itself, over and over.”

One in five women are raped at some point in their lifetime; nearly half of women in the US experience sexual assault other than rape. Yet only 60% of domestic violence and intimate partner violence incidents are ever reported to the police.

“Here in the US, we have to make it safe for them to stand up, and they have to be heard and believed!” Darline Turner, physician assistant working with pregnant women, states. “I see reports all the time where partner violence is not taken as seriously because it happens within a relationship. “

Lopez agrees, “Yes, many suffer in silence, never reporting domestic violence, never getting the help they need. We can talk about filing Restraining Orders, pressing charges, but the risk of escalation is ever present. “

Dr. Sison confirms that, “it turns out to be a vicious cycle when the abuser is enabled and … the person being abused makes excuses for the abuser, enabling further abuse. By encouraging them to speak up, people help them go through recovery, then they can help prevent others from becoming victim.”

“Unless the victim comes forward and agrees to press charges,” Lopez said, “the hands of police and healthcare professionals are tied.” Yet Turner feels that it can be difficult to get the victim to act, with “the emotional abuse that typically accompanies the physical abuse. These women are really beaten down!

Once a victim is beaten down emotionally, its really hard to get them to speak up or even admit there is a problem.” “The head trips that often occur make the abused feel like its their fault, like they deserve it. That’s much of the shame.” Natrice Rese, patient advocate said, “ victims feel they brought it on themselves. [We] need to change that, empower.”

What is the impact of domestic violence on health?

recent study in Iowa found adults with 4 or more adverse experiences as a child to be more likely to have diabetes and heart disease! People who experience rape or stalking are more likely to report frequent headaches, chronic pain, difficulty sleeping, poor physical and mental health. The same Iowa study found abused adults are 4 times as likely to have obstructive pulmonary artery disease .

Lopez stated, ”it leaves long lasting, often permanent emotional scars.” Dr. Sison agrees, “Psychiatric health is very much affected leading to major depression in most cases.”

Turner descries the generational nature of domestic violence, Many kids who grow up in abusive homes grow up to abuse or be abused. Unfortunately, there are high rates of domestic violence against pregnant women.” Jen Romnes entered the chat to agree, “It impacts children. I am a child of domestic abuse. Colours my world view. Just finished memoir.”

Patricia Anderson, a librarian and domestic violence survivor advises, “Don’t pressure them or make them feel forced. [It] took me decades to write my story. I did not realize I was a battered wife until I’d been divorced a year. Your brain just doesn’t apply that context to your own life.” Anderson further explains, “Remember, it isn’t always PHYSICAL violence. There is sexual, economic, social, and emotional. Someone might think they are not a victim because the violence wasn’t physical.”

People who are abused experience a great deal of shame, Turner believes. “Somehow we have to impress upon the victims its not their fault. So much stems from “I should do, I should be better.” Lissanthea Taylor, a physical therapist said, “Shame needs silence to grow, shame correlates with so many other physical and mental health issues. [It’s important to] open a context for talking.”

RV Rikard, sociologist, brought up the salient point that men are also victims of domestic violence. In response, Turner relates her experience as a health care provider for a man, “I once treated a man who was being beaten by his wife. When I figured it out, he was mortified that I had found out and begged me not to say anything to anyone. He stopped coming to the office. I wonder what happened to him? Men are far less likely to disclose the abuse or report it. This is even worse in same sex couples.”

Among the 70% of women who experienced domestic violence and then told someone about it, more than 1/2 (58%) said no one helped them.

If over 1/2 of victims told someone and didn’t get help…what does that say about speaking up? Alisa Hughely replied, “ It say WE don’t know how to listen or we are not equipped to give effective help it’s our job as HP’s to meet people where they are at- not what we think they must do.” Yet Romnes points out, “It’s hard for victims of DV to get help. Not only is their safety at stake, but children’s safety too.”

Having been a victim of domestic violence Anderson is one of the people who does act to help. “I always had a reason to not tell. If no one asked, I wouldn’t tell. But who would ever ask. I was so lucky. Someone did listen, did help. Now that’s something I do. I always ask. I always follow up. And having been a victim, you can spot it easier. Educating needs to include how to spot victims and NOT become another abuser.”

Three out of four (73%) parents with children under the age of 18 said that they haven’t had a conversation about domestic violence with them. That is a dangerous strategy because approximately 9% of high school students report experiencing dating violence in the form of hitting, slapping, etc.

Lopez suggested a video for all women over the age of 13 called “Just Yell Fire.”

Compared to homes without guns, the presence of guns in home is associated with a 3-fold increased homicide risk within the home. Homicide risk is 20 times higher where previous domestic violence exists and there is a gun in the house and homicide risk connected to gun ownership increases to 8-fold when offender is an intimate partner or relative of the victim.

These are just numbers until it happens to someone you know. Anderson said, [My] “Friend had a friend with a restraining order against her ex. He showed up on her porch with a gun and killed her. Really distressing. My friend never got over it. Adding insult to injury, the killer only got five years in prison.” Romnes feels that there needs to be a change in expectations and increase the penalties for the abuser. “Flip the losses from the victim fleeing with just a shirt on her back to the abuser bearing the hardship. The abuse will stop if the abuser becomes controlled as penalty for acts of violence: flip the power imbalance.”

Many worry about the impact of domestic abuse on children. Those who are abused are equally concerned as Anderson notes, Anderson said, “I never ever hit my kids. Found other ways to discipline. They didn’t like them either. There are ways. I looked for mentors in good parenting, intentionally made friends with people in good marriages.”

Rikard shared a domestic violence and fathering intervention program .

What can we do to prevent domestic violence? “Keep talking, keep communication lines open, watch for signs,” Natrice said. “Awareness, awareness, awareness,” Dr. Sison advises.

What do we need? Not a holiday that celebrates scaring people with graphic and horrible costumes, masks and decorations, but an open discussion of the fears and horrors that are perpetrated every day on families, friends and loved ones by abusers.

To check out the quotes on Domestic Violence take a look at these links:

More work to do against domestic violence
http://www.ctpost.com/news/article/More-work-to-do-against-domestic-violence-4882569.php

Study Ties Early Trauma, Health Risks
http://www.desmoinesregister.com/article/20131014/NEWS/310140060/Register-Exclusive-Study-ties-early-trauma-health-risks?Frontpage&gcheck=1

http://www.ncjfcj.org/sites/default/files/DVAMFactSheet%202013.pdf

Being Invisible Girls

What would you do if you were seated on a crowded subway and saw a little girl falling asleep standing up?

“I think: someone needs to hold that little girl because she’s sleepy.  And all of a sudden the little girl looks right at me.  So  I hold my hands out and she climbed on my lab and she fell asleep,” Sarah Thebarge remembers.

That one action changed Sarah’s life.  “There are so many people in this world who feel lost, broken and rejected.  And so if I can do anything, even the smallest thing, to make someone not feel that way, I’ll do it,” she says.

Who is Sarah Thebarge?

sarahthebarge640She’s a writer, physician assistant, and graduate of Yale who, at age 27, was diagnosed with breast cancer.  “I was doing laundry and I put all of my white clothes in the wash…  I was just wearing a white t-shirt….All of the sudden if felt like a raindrop had fallen from the ceiling.  And I wondered if something was leaking up there.  I looked up at the ceiling and then down at my shirt and there was blood on my shirt.  I went to the bathroom and lifted up my shirt and sure enough it was bleeding…Only masses cause blood to come out and I knew I had cancer.”

Only about 1000 people are diagnosed with breast cancer before they are 30 and their cancer is often very aggressive.

Sarah’s story turns grim as her diagnosis of ductal carcinoma in situ, which Mayo Clinic says is “the earliest form of breast cancer,” returns as invasive cancer, a year after a bilateral mastectomy. And then it recurs twice:  once ,during chemotherapy.

During this period of time, Sarah’s boyfriend broke off their relationship; she had to drop out of her second masters program (this one at Columbia); a friend died of cancer; and, a truck hit her car. “EVERYTHING went wrong during chemo.”  Sarah got sepsis and nearly died.

A small town girl from a small town near Lancaster, Pennsylvania, Sarah had no family history of cancer.  Her father is a fundamentalist evangelical Baptist minister and her mother a homemaker.  “I …had to wear dresses to my ankles, couldn’t cut my hair, no woman in my family had ever gone to college.”

She describes her growing up this way. “I was raised in a pretty conservative home. My parents tried to balance…love with toughness.  As a little girl, I was really afraid… I was afraid that God was just waiting for you to mess up and then God would smite you. I was very focused on the rules and my impression of God was, if you kept all the rules you were on God’s good side and good things would happen and if you broke the rules, even the smallest infraction, then God was going to punish.”

But Sarah overcame her childhood to be the first woman in her family to attend college and graduate school at not one but two Ivy League Schools.   Cancer stopped her.  So, after the turmoil of treatment in Connecticut, she decided to sell all her possessions and buy a one-way ticket to Portland, Oregon.

She’d been in Portland almost a year, “I was still pretty broken,” she relates; when she opened her arms to a three year old girl on the Max.book_launch_slide  “It was rush hour I was sitting on the Max reading and this Somali woman gets on the train with 2 little girls.  And the train is really crowded…mom finds a seat and she has a chair for the 4 year old. The 3 year old doesn’t have a seat and this little girl was trying to sleep. Standing between her mom’s legs.”

While holding the three year old, Sarah struck up a conversation with her mom.  Before getting off the train, Sarah learned where they lived.  Fortuitously, before getting off the train the three year old put a pair of dice in Sarah’s hand.  “I went to their apartment to return the dice because I didn’t want this little girl’s first memory of America to be of someone who had tricked her out of giving up her only game.”   She entered their apartment to find mom and five little girls eating moldy bread dipped in ketchup.

“When I went in I realized how they were living.  Which is this totally dark apartment, no furniture, they didn’t have dishes, toothbrushes, nothing.  They just had the clothes on their back. The most dire thing was that they had run out of food…The mother was dumpster diving behind the Safeway giving her girls anything she could find to eat.”

Part of their difficulty came from illiteracy. “They’d gotten food stamps. But mom didn’t know how to use an oven.  So she spent all the food stamps on supplies to make Somali cakes (like cornbread). She can’t read, so she thought the word “broil” on the oven meant “on”  She put all the cakes in the oven to bake them, but it was on broil, so all their food scorched in a few seconds.  And there was a month before they got new food stamps. So she ended up dumpster diving.”

Sarah pieced together their story.  How mom and dad had fled Somalia’s genocide, how dad had abused mom and then left the family in Portland without money.  How mom had no job skills, didn’t know the language and had no support to help her raise five little girls. “She looked the way I’d felt when I first got to Portland…tired, scared, sad…  I thought… if it was the other way around…if I were dropped into Somalia under those circumstances…And I decided if someone found me in Somalia like that, I’d want them to HELP ME. So that’s what I did.”  She bought them necessities like pajamas, toiletries, food, clothing and her church chipped in furniture and dishes.

The “Invisible Girls” and Sarah are family now but it wasn’t an easy story.  Dealing with their first winter was just one more “new” situation they faced together.  Sarah describes one of these experiences this way,  “The first time I turned on their heat, the invisible girls ran around screaming that I’d set their house on fire!  They didn’t need heat in Somalia. So the only explanation for why hot air was coming from behind a wall was that there was a fire. And they knew that I was the one who’d started it!”

The book The Invisible Girls, published in April, details Sarah’s experiences as a cancer patient intertwined with meeting and connecting with this amazing Somali family.  The proceeds from the book are going into a college fund for The Invisible Girls.  Sarah recommends this book with, “I think it is an important read for cancer patients — to see that there’s life beyond the misery of treatment.  To see that it matters to the world that you try to survive (if that’s God’s will for you).”   Sounds like a book for everyone, doesn’t it?

The content of this blog post comes from the #HCHLITSS transcript from the Hashtag Project September 26, 2013 and from personal transcription of a radio interview on OPB conducted by Allison Frost on June 19, 2013.

Sea-to-Sea: METAvivor and Metastatic Breast Cancer Awareness

1236342_223257914499618_934358087_n“…the biggest problem in the breast cancer business, and make no mistake, it is big business, is the fact that we’ve done nothing to change the death rate. NOTHING.” ~AnneMarie Ciccarella 

No Change in Death Rate From Breast Cancer Since 1970

Much media attention is brought to bear to advertise the breakthroughs in breast cancer research yet the truth is that the death rate from breast cancer is basically unchanged since 1970.  Actually, to be more precise, that is the death rate from metastatic breast cancer (MBC).

Sea-to-Sea For METAvivor

Real people are affected—people like little JJ and his father, Marine Lt. Col. Joseph Fagan.  Three years ago, Joe and Lainie Fagan were excited about the arrival of their new baby.  At age 29, and 34 weeks pregnant, Lainie received horrible news—she had metastatic breast cancer.  JJ was delivered immediately but his mama died nine months later.  “Joe Fagan and his wife Lainie were members of our local METAvivor group in Annapolis,” Dian CorneliussenJames (CJ) , founder of METAvivor explains.

“Joe approached me in February … said he wanted to tell people about METAvivor and raise awareness for MBC.  He wanted to do this by running across the USA … what did I think?” CJ says.  Needless to say, CJ was elated.

So February 1, 2014, Joe will start running.  The event is called Sea-to-Sea for MBC.  Joe will run from San Diego to New York City  3,845 miles, arriving in the Big Apple on Father’s Day.  He will be running through Arizona, Colorado, Kansas, Missouri, Illinois, Indiana, Ohio, Pennsylvania, New Jersey.  On the way he will meet with people who have metastatic breast cancer and recipients of METAvivor grants. “We plan for sponsorships and donations in kind to cover expenses. One hundred percent of funds raised through this fundraiser go to MBC research,” CJ states.

What is METAvivor?

METAvivor is an all volunteer organization founded 2009 to raise awareness of metastatic breast cancer and to fund research. Almost everyone working for METAvivor is a patient with metastatic breast cancer.

It’s hard to compete for media attention: the world of funding for breast cancer is primarily focused on prevention and awareness of breast cancer.  Pink, the color of breast cancer awareness, is everpresent, especially in Breast Cancer Awareness Month, October—what advocates for change call ‘Pinktober.’  “The pink community is enormous and has a huge amount of funding. They do everything with big splash … paid experts … “ CJ says.   METAvivor puts 100% of donations and fundraiser proceeds into its [research] grants. Others must raise millions to do what we can do with $250,000.  We want you to know that this week we chose 4 new grant recipients … Packages total $320,000!”

Metastatic Cancer

CJMany believe that the money that is donated to large philanthropic organizations is for research for a cure to breast cancer.  This is, unfortunately, not the case.  “We need to force a change in the conversation. Breast cancer doesn’t kill people. METASTATIC disease does. Their needs are URGENT,” AnneMarie Cicarrella,  Sea-to-Sea Run Volunteer, states.  “Prevention and early detection were noble goals but they have not worked.   How long will we practice triage in reverse?” CJ asks.

The primary goal of Joe’s run and for METAvivor is to bring *significant* attention to the metastatic breast cancer community. “  Their voices are lost in the pink hype,” AnneMarie says.

“This event is happening because the majority of public doesn’t even know what metastasis is.  We want to educate the public, raise awareness that 90% of all cancer deaths are from stage IV cancer,” says CJ.   Stage 4 is the medical terminology for cancer that has spread from the original site, like the breast, to other organs of the body.  It is fatal.  “We want to raise awareness that 100% of all “Breast Cancer” deaths are from MBC. …we want to raise awareness that only 2-5% of research funds go to stage IV cancer collectively,” says CJ.

The statistics–that 90% of all cancer deaths come from metastases, that 100% of all breast cancer deaths come from metastatic breast cancer, and that only two-to-five percent of research dollars go to studying stage IV cancer—are chilling.  But that is not the only problem with the numbers.   “Actually, the numbers of those with MBC are greatly distorted. WE ARE NOT COUNTED. We are counted only at initial diagnosis,” CJ relates.

What’s Not Happening in Research

METAvivor’s goal is to get commensurate funding, that is, funding for metastatic cancer that is equal to funding for awareness and prevention.  “Commensurate funding is the only way to stop the deaths of roughly 600,000 cancer patients every year in the US,” says CJ.  “Metastasis researchers are trying hard to find solutions, but at only 2–5% research funding … progress is snail pace.”

“We need these researchers to be funded. METAvivor is the only organization w peer-reviewed research grants solely for MBC. This is what Sea-to-Sea For MBC is trying to do.   Spread awareness.   Hear the patients.   Hear the researchers along the route.   Spread the word,” says CJ.

aacr

AnneMarie explains her interest in metastatic research with  her mother’s story,  “Early detection doesn’t guarantee anything. My mom’s mets came after a 25 year dormancy.  My mom is a 2-time survivor.   She surpassed five years on both breast cancers.   She’s in the ‘good stats’, but she’s metastatic. ”  CJ also shared her experience.  “Only about 6% of BC is known to be genetic. I was told I was low risk .. .but am metastatic.   You never know,” she says.

“Metastatic cells can exist prior to one having a detectable tumor.   These cells do not respond to primary BC treatment.   Hence MBC,”  CJ highlights. “People can metastasize any time. Mets cells can lie dormant over 20 years.  Everyone is at risk.   Not to scare.   Just being realistic.”   Anne Marie points out, “All of the questions posed… why cells leave, what causes them to wake up from dormancy…this is WHY work of METAvivor is so important.”

At this point, when the cancer spreads to other places in the body, medicine can only offer treatments to stave off the spread.  One type of chemotherapy and/or radiation therapy is used, when it fails, another is used.  With metastatic disease, there is a cycle of one difficult treatment with side effects after another until there is no treatment left.  The patient dies.  “With metastatic friends, my hope is that they never run out of treatment options. Theirs are very limited,” AnneMarie states.

loriLori Marx-Rubiner, METAvivor Board member and Director of Nationwide Ambassador Program agrees, “We don’t know WHAT causes cells to leave the breast, we can’t distinguish those which will from those which won’t.   Studies are in their infancy…”  The fact that so little funding is applied to metastatic breast cancer is extremely frustrating for those whose breast cancer has metastasized.  “It’s good to try to prevent MBC.   BUT this does NOT help those who have already metastasized.   We want research to extend our lives with quality and ultimately to save lives.   This is not helped by prevention of mets research.  I’d like ALL chronic disease curable, I’ll settle for chronic.   I’d like to see my son marry, grandkids.  Many live years with MBC but life expectancy is still about two years. Quality and quantity…we need both!”

Volunteers NEEDED

If you want to make a difference and fund research to extend lives with quality and quantity, then be a part of Sea-to-Sea for MBC. There is a need for volunteers for the Sea-to-Sea for MBC event.  Take a look at the <a href=” https://t.co/VC2weNLrnC”>Facebook Page</a> and sign up!

“As metastatic cancer patient, more than anything we need the truth spoken, we need to be seen and heard,” says Beck Bills, breast cancer activist.

 

The Frog List

image“I can use all the prayers I can get!”

In August 2011, Jessica Rice had a little cough—‘nothing to worry about’–and a low grade fever that kept her out of work a couple of days. By early October the cough became “productive.”  She did what any healthy, 30 year old Vice President of Global Projects at Citi Corporation would do–she went to the CVS Minute Clinic for some antibiotics.  Since the cough had been around for a bit, they sent her to her primary care physician.  Convenience always paramount, she found a physician who practiced in the building where she worked.  He said she had allergies.

By the end of October, she’d been sent to a rheumatologist and was coughing up blood.  Finally admitted to the hospital November 8th, she relates,  “I left work Friday as someone who just seemed really sick, and by Monday, I was stuck in the hospital .. .with a mystery illness that wouldn’t get better.  Didn’t know if I would ever get to even go home at that point. ”  It took six days of testing to find out she had lung cancer.

Not a smoker, with no family history of lung cancer, Jessica’s diagnosis is an extremely rare cancer called bronchioloalveolar cell carcinoma in the diffuse form. With this form, surgery is not an option.  Her cancer is stage 4—there is no stage 5.

When she learned her diagnosis, she wasn’t told a prognosis, “I believe…there are far too many variables to give an accurate prognosis,” she says.  “I do ask my specific questions regarding timelines. For example: If I have zero response to this treatment and my tumors continue to grow at the same rate, how long until I succumb to them?”

Until she lost her hair, in August 2013, she didn’t even look sick.  “People didn’t understand why a normal, younger adult was being pushed around the mall in a wheelchair.  Or why I parked in handicapped spaces.  It was a bit annoying, watching people scan me up and down, trying to figure out my defect…” Jessica states.  “Seth (my fiancé) and I have coined it “the jaw drop” when people find out.”

Lung Cancer: The Facts

Currently, most people are diagnosed with lung cancer at stage 3 or stage 4.   According to radiation oncologist Dr. Matthew Katz, “Our ability for early detection is poor and earliest symptoms are pretty silent or nonspecific.”   As Jessica writes in her blog, “Lung cancer tops the list with the highest number of deaths for both men and women.  In fact, it kills nearly the same amount of people as colon, breast, pancreatic, and prostate cancers combined.”  Though her former life didn’t include this type of advocacy, Jessica is now using her writing and social media skills to share her story and bring the lung cancer experience to light.  In her blog post ‘Lung Lost Love,’ she continues to describe  the terrifying statistics around this disease “The 5-year survival rates for stages IIIa, IIIb, and IV are 14%, 5%, and 1%, respectively.” And she notes that, even if it is caught early, treatment doesn’t result in much improvement—5 year survival rate for stage IIa non-small cell lung cancer is 30%.

Jessica has been fortunate to have oncologists  that she can trust.  “My oncologist is up-to-date on the latest treatments.  And when I would ask about consulting with another doctor, he would encourage me, reach out to that doctor himself to discuss my case both before and after I met with them.”

One positive outcome is the proactive work these physicians have done on her behalf.  “The hospital pulmonologist and my oncologist (before I ever met him) sent my biopsies for EGFR and ALK testing automatically. It seems that some people have to request this from their doctors, so I feel fortunate that mine were up-to-date on the latest treatments and didn’t hesitate to take action. (I did test ALK+, and the targeted therapy crizotinib was my first line of treatment.)”  Since her diagnosis, she has had 6 different treatments including a clinical trial and radiation.

This past June, Jessica had a gran mal seizure.  Fortunately, she received emergency care and survived without severe disability.  Unfortunately, the seizure signaled that something had changed.   This brilliant woman–a Wharton business school graduate – (now age 32) has brain metastases.  In her blog she writes, “If abnormal organs are prone to defects then my brain would be the lightning rod of my body. My entire life it has been my blessing and my curse. It’s riddled with more IQ points than even I believe and an intuition that can border on creepy.”   She’s coined a phrase for the tiny metastases that can be seen on MRI scans as “brain lint.”

“My Frog List”

Awareness of her mortality ever present, Jessica wishes “someone on my medical team would talk to me about what I want towards the end. After my seizure, I know it could come anytime.”  Some of the things she wants are found on her blog. “The term bucket list was made most popular by a movie in 2007.  Everyone knows it means that these are the things you want to do “before you kick the bucket.”  Honestly, it seems a little cold and crude to me.  And, never one to blend in to the crowd, I decided to think of something a little more creative, a little more me.”  That’s why she calls hers My Frog List .  “My Frog List is what I want to do before I croak!”

Jessica grew up on a hobby farm.  She and her mother (her “best friend”) now own a small hobby farm in West Virginia.  “Our animals are our family,” she says.  Part of her frog list is about bringing home and family closer. “Sometimes I look for normalcy more than anything else,” she relates.  Her frog list would bring normalcy to her life. “My Frog List is relatively short. Top priority is to get my mom (and our animals) closer to me. Need to do this ASAP.  After mom is close, a Wedding and Honeymoon,” she says.

Making these dreams a reality is possible but only with the help of others.   Friends have set up a website to make the move, her wedding and her honeymoon a reality. “It’s comforting to know that I’m not alone – WE (Seth and I) aren’t alone – as we go through this.”

You can find out how to help by visiting Stage IV Blog and YouCaring.com.

“I really want to thank you all for … listening to my rambling, reading my blog, and sharing my story,”

Based on #HCHLITSS transcript September 12, 2013  #LCSM transcript September 5, 2013.  Thanks to the Healthcare Hashtags Project

Anyone Can Get Lung Cancer

deanas photo“My beloved mother was diagnosed with Stage IIIb non-small cell lung cancer in early June, 2012,” says Deana Hendrickson. “I knew virtually nothing about it…was heartbroken, and frankly angry, to learn that over half of those with lung cancer die within a year of diagnosis.”

The estimated new cases and deaths from non-small cell and small cell lung cancer combined this year are 228,190.  Deaths from lung cancer are estimated 158,480.  For both men and women, lung cancer is the leading cause of cancer deaths in the United States, claiming more lives each year than colon, prostate, ovarian and breast cancers combined.

One reason for the high mortality rate is that lung cancer is difficult to catch early.  Twenty-five percent of people who are diagnosed have no symptoms at all: the cancer is first discovered on an X-ray.  In others, coughing or shortness of breath are ignored or believed to be symptoms of flu or allergies. Often when symptoms become more severe, the cancer has spread.

Deana’s research also revealed that the 5-year survival rate for lung cancer is less than 16%.  “This dismal prognosis was made even more upsetting when I discovered that lung cancer federal research funding lags far behind other major cancers despite the fact that lung cancer is the number one cancer killer,” she relates.

Deana is on a mission to educate on this deadly disease. “I was so shocked by my own ignorance that I figured others must be just as clueless,” she says. She learned from experience the terrible stigma of lung cancer, “Mom and I learned first-hand about the stigma of a lung cancer diagnosis (the “did she smoke” factor, as if it’s a deserved disease).”

Between 15 and 20 percent of people who get lung cancer haven’t smoked a day in their lives.  Sadly the efforts made to dissuade cigarette smoking have had the effect of stigmatizing everyone who gets lung cancer. “I am the first to admit that I once thought lung cancer was a deserved disease. I’ve watched the commercials and read the ads linking smoking with lung cancer.”  Deana has changed her mind, “Smoking cessation and prevention efforts are wonderful…Unfortunately, these programs have…had the unintentional effect of perpetuating the perception that lung cancer patients asked for it. It took much thought and soul searching for me to realize that whether smoker, ex-smoker, never-smoker, no one deserves this awful disease, nor any disease for that matter.“

Exposure to second hand smoke, radon gas, asbestos, heredity and air pollution are some of the causes of lung cancer in non-smokers.

Deana is educating through twitter, founding the twitter chat the Lung Cancer Social Media twitter chat, hashtag #lcsm.  Based on the successful Breast Cancer Social Media chat (#bcsm), Deana is hopeful that the involvement of physicians, like chat moderator Jack West @JackWestMD and participant Martt Katz @subatomicdoc (who came up with #lcsm), will provide the kind of support and guidance to assure the chat is timely, supportive and accurate.  “I really wanted to have a hashtag to unify the lung cancer community; a “place” where we could all be as one group.”

Deana’s determination is based in loss.  “I was [my mother’s] primary caretaker,” Deana relates, She suffered terribly,” Deana remembers.  Deana lost her mother just nine months after she was diagnosed, in March 2013.  As she mourns she is taking action, “I’m a great believer in the power of people making the choice to do something, anything, to make the world a better place. In Judaism, it’s known as Tikkun Olam (literally “world repair” or repairing the world). That’s my inspiration.”

Always talk. Always share. Always engage.

“Always talk. Always share. Always engage,” says Anton J. Gunn, Director of External Affairs in the Office of Intergovernmental and External Affairs (IEA) at the U.S. Department of Health and Human Services (HHS).

Mr. Gunn’s long title might put you off, but there is nothing off-putting about this energetic former college football lineman when he is talking about service.

Anton GunnAnton Gunn is a newcomer to Federal Government, joining HHS after serving as the go-to man in South Carolina during President Obama’s first election primaries.  He worked grassroots, going door-to-door to win voters and in the process came to the decision that he should serve in the South Carolina State House of Representatives.

Linemen are usually the largest players on the team.  Their role is to make a space for action, meeting obstacles and overcoming them.  Meeting obstacles–like winning a seat in the SC State House, in a predominantly white Republican voting district–seems to be his destiny.  In his present position at HHS, one of his roles is to cultivate and maintain relationships with national, state and local organizations.  With the Affordable Care Act (ACA) being rolled out, Mr. Gunn will be tackling many challenges.

Gunn’s message is engagement, “I am proud of our work on the ACA.  We have efforts focused on patients…There is no better way to get real answers to real questions than to make a COMMITMENT to engage with patients and stakeholders.”  And he believes that engagement will overcome some of the challenges in healthcare, “Challenges? Well, there are lots. Lack of literacy. Social norms. Culture all can make it difficult. But we can overcome them.  We have tools like the ACA that will reduce challenges in health care.”

October 12, 2000 marked a turning point in Anton Gunn’s life.  On that date, Gunn’s  younger brother, Cherone, a seaman serving on the USS Cole, died in the terrorist bombing that also claimed the lives of 16 other sailors. Motivated to enter the political arena, Gunn became an active community organizer and advocate, a leader in economic development and health care reform.

“Public engagement means that you are focused on those you hope to serve,” Gunn believes.
“It means what matters to them, matters to you.” His professional mission, articulated in The Audacity of Leadership: 10 Essentials to Becoming a Transformative Leader in the 21st Century released in 2009 is to bring, “”diverse perspectives together to solve world challenges.” People-to-people is the way to find answers, Gunn feels.

Gunn also believes that technology can make a difference.  “We have to embrace technology to get higher quality outcomes in health care.  Health information technology can provide a standard framework for all to attain higher health literacy,” Gunn states.

To illustrate, Gunn points to the investments HHS is making to reduce health disparities, via health technologies “HHS launched an app challenge titled “Reducing Cancer Among Women of Color” last August.  The winning app will provide users w/ info on screening & preventive services in diff languages & in culturally appropriate contexts.”

Persuading the public that the Affordable Care Act will make a difference is Gunn’s present objective. “The ACA will make health coverage available to millions who don’t have it now. That’s a big first step to helping them to get care. “  He believes that joining health technology and the ACA’s insurance coverage is a huge first step.

“Being able to afford health insurance has been a challenge. The ACA is changing that.  ACA means insurance reform, and health information technology means delivery reform. “

By meeting people where they are, Anton Gunn is trying to improve healthcare in the US. “The power to improve our health care systems is at our finger tips. Engage. Include. Respect and Empower patients and consumers,” he tells all stakeholders.  His plea to us is simple, “ Visit http://t.co/Rzbm1JeWHO, learn about the marketplaces coming in October. Help someone get covered.”

Based on a #HCHLITSS twitter chat with Anton Gunn on May 9, 2013.

No One is Alone in Anything

Hearing a diagnosis of “cancer” from your physician can be terrifying and isolating. Yet, Nancy Stordahl knows “no one is alone in anything.” And she’s been making sure of it by being there for others diagnosed with breast cancer.

That’s because she’s been through it, twice: once as a caregiver and then as a patient herself. “My mother was diagnosed in 2004, metastasized in 2007 and died in 2008. I was diagnosed in spring of 2010,” she says. The almost mechanical recitation of dates belies the emotional upheaval of the past nine years.

But Ms. Stordahl hasn’t kept quiet. She is part of the large and connected community of breast cancer bloggers that are sharing their stories on the blogosphere. She’s also the author of the book Getting Past the Fear: A Guide to Help You Mentally Prepare for Chemotherapy.

“I couldn’t find information I wanted to read about preparing. There isn’t much out there about getting your mind in the right place. Lots on side effects and such, but not the mind,” she discovered. “My ‘research’ was my personal experience. My book isn’t sciency, but personal…”

Ms. Stordahl wrote the book because of her own fears. “I wrote [the book] because I was terrified and overwhelmed before chemotherapy. First and foremost I wanted to help people get past the fear,” she says, “I wanted my book to be like talking with a friend who’s been there. It’s like a face-to-face chat.”

Ms. Stordahl knows a truism most don’t realize about chemotherapy: “Chemotherapy…makes illness very public to all.” With the loss of hair, comes a loss of privacy. It is there for all to see. “Chemotherapy…represents loss of control
Chemo is really tough to face. Admitting fear is hard to do, believe it or not,” she states. She recommends her book to family, caregivers and even health care providers.

DSCN96001To get a taste of Ms. Stordahl’s writing style, take a look at her blog Nancy’s Point. Unafraid to address real issues, it explores the experience of loss as well. “My book is much like my blog…personal and honest all the way…it’s how to connect best, I find.”

Although she states that she is not “sciency” Ms. Stordahl relates health information in a way that is approachable, especially when it comes to the genetic testing she and her mother went through. “I did genetic testing because my mother was BRCA2+ … found out 2 years after her diagnosis, sad to say,” she states. Being BRCA2+ means that she and her mother carried a genetic mutation that increased the risk for cancer. Ms. Stordahl calls her family history “complex” because, like so many families, the reasons ancestors died was not apparent. But she states, “I have a daughter and yes I would [recommend that she get tested], but it’s a very, very personal choice.”

Writing has been therapeutic for Ms. Stordahl, “It was a way for me not to implode!” she says. This new book author is looking ahead to her next book, one on her journey with genetic testing and BRCA+2 diagnosis. And she’ll keep going on her blog “Nancy’s Point” because it’s a “venue for advocacy” and an opportunity for special friendships. As she relates, “I count my blessings every day for my readers. I value every one of them. I really do.”

She sums up her message to others going through a cancer diagnosis this way, “There is no right way to do cancer. Your experience belongs to you.” And she adds reassuringly, “Don’t be afraid to admit your true feelings, fears, all of it. No one is alone in anything.”

It’s Okay To Laugh, Cry and Feel Uncertain

6360_1109050649382_1320300607_282944_6468605_s1In 1990, Robert Harris and his wife and best friend, Cindy, had been married 10 years and had two boys, ages 2 and 5.  One day, Cindy complained of pain in her knee.  After going to an orthopedic surgeon expecting the usual sports related diagnosis, their world changed. Physicians discovered that she had Non-Hodgkin’s Lymphoma. Cindy went through chemotherapy and radiation. The family celebrated her “cure.”

For 16 years, Cindy was in remission.  During that time, the family moved from Maryland to Orlando, and watched their children grow up. Then, in 2006, while taking a neighborhood walk together, Cindy’s knee “gave out.”  Again Robert and Cindy went to orthopedic surgeons only to learn that she had a deadly form of cancer called Leiomyosarcoma.

“I very unexpectedly became an at-home caregiver,” Rob says.  Today Cindy has “been cancer-free, but had [her] leg amputated and [is] dealing with painful inflammation and erratic blood counts.  Chemo has affected [her] bone marrow. [and there is a ] Possibility of leukemia. [we’re] going thru testing now. Hoping for the best.  We are grateful for every day we have and look at it positively.”  Unable to use a prosthesis, Cindy is now wheel-chair enabled.

Robert Harris is best known online today as @Rob_Cares, a moniker he adopted after writing a book about caregiving and starting Rob_Cares LLC. “When I was told my wife had cancer, a 28% chance to survive and could die in 4 months, [with Leiomyosarcoma, Stage III]  I felt completely lost and helpless. Just like when 9-11 hit us. We didn’t know what to do.  I hated that feeling. As a result, I didn’t want anyone else to feel helpless, like I did.  I also wanted them to read our story and know that it’s okay to love, laugh, cry and feel uncertain.”

Published in July 2012, Rob’s book, We’re In This Together:  A Caregiver’s Story  is a 5 star hit on Amazon.  It is a #1 bestseller in the Physician and Patient Caregiver Category and continues to rank as the #4 top rated book in that category since it’s launch.  Why’s this book so special?

It is written from the heart.  “Most of us don’t practice medicine, yet, without warning, we are thrown into a medical environment and told to be a caregiver to our loved one. Without any experience, that is a daunting task. I wrote the book to help others become knowledgeable in their roles from the lessons I learned on my journey.”

The book chronicles both of Cindy’s cancer experiences, with 70 tips for caregivers interspersed with Cindy’s observations.  As Rob says, “I knew nothing when I became a caregiver. I was too proud to ask others for help or advice.  I was completely out of my element…in almost every regard. Whatever I learned was self-taught….”

Rob remembers a moment when he “dove into waters I had never encountered” at the drug store, “I had to learn about caring for a female in terms of their hygienic needs, etc. As a male, we are less attuned to beautifying ourselves and certainly not our mates. It was very uncomfortable for me when I had to shop for feminine hygiene products in the store for the first time. That was embarrassing. Thank goodness a woman approached me who could tell I seemed lost and didn’t know how to swim in that isle of the store. She asked for my list and located the products my wife was needing. Other than laughing at me (hysterically, I might add), she was very kind.”

From the mundane to the profound, Rob shares and provides guidance to legions of caregivers.  And there truly are legions-the numbers are astounding.  There are over 65 million American caregivers, a number that is 29% of the total population.  These caregivers devote 20 hours a week caregiving.  Almost a million and a half of those caregivers are children, between the age of 8 and 18.   Forty percent of caregivers have been diagnosed as clinically depressed.

Rob does the job of many caregivers.  “I attend all doctors appointments, quarterly check-ups, housekeeping, etc. Keep her spirits high.  I’m helping her adjust to her new life at home and making every day a great day for her. We have fun and laugh.”

That’s an important part of caring for himself as well.  “We love each day we’re together as a family. We created an acronym: ESD = Every Stinking Day live each day as if it’s our last,“ he says.

This strategy applies to everyone as well. “Everyone that interacted with us was in a positive frame of mind and happy as possible…. I communicated with “happy” family and friends only. If someone was negative or critical, they were removed from my inner circle until they changed their mood. That’s how we were able to remain upbeat during the most difficult of times.  We had a friend that would always say, “You poor dear.” She was ousted from our group as a result.”

Staying upbeat has been his goal.  “I wouldn’t allow myself to get stressed. Whatever was going to happen would happen.    Being stressed was not going to change our set of circumstances….To unwind from the stress of the events we faced, we laughed a lot, joked with others and made sure.   We would only watch happy shows and comedies/movies. I also went for runs for quiet time.”

Rob and Cindy use this strategy in their interactions with medical staff. “We played practical jokes on doctors, committed random acts of kindness and made friends with everyone.”  In fact they have made it their job to know their health care providers.  “The nurses, not the doctors, run the hospital.  They are in charge.  We treated everyone like family as soon as possible. I bought them snacks and drinks. We asked and learned about their families.  When doctors came in, we did the same thing. We made them tell us about them. Nothing professional. Some were resistant at first, but eventually, they warmed up to us. We made friends with them.  Most are our friends today.”

They made a deliberate effort to be connected. “Our goal was to be treated better than everyone else on the floor, especially when my wife needed them. “  Yet their idea of being positive and connected to others comes from having touched by death.  “My wife passed away and came back to life in December 2006. The doctors were right there for us the entire time.  Most people see angels and bright lights…She saw a shopping mall and Coach purses without price tags! Honest!” Rob states.

When asked how friends and family can help caregivers and patients, Rob is full of suggestions, “Communication is MV_3_12_RobHarris__197_WEBthe key. Call and ask what the family needs. If they say they need nothing, bring them food from a restaurant, come visit or just call the caregiver to see how she/he is doing. Outside contact is missed when stuck at home or a hospital. It’s important to stay in touch with friends and family.”

Rob’s first book is a love story but it is also about cancer.  “It puts cancer out in the open and all the emotional dilemmas that come with it. We’re human. My book speaks to that.”

Now, Rob is editing another book called, We’re In This Together: A Caregiver’s Guide which he hopes to have ready in the fall of 2013. This book will continue to describe his learning and also take a “psychosocial perspective.”  Rob says, “As men, we don’t share our emotions. I held them back, as well.  I learned as I went along that it was okay.”  And he promises that like the first book, “you’ll be laughing and crying.”

Rob Harris’s Book is available at Barnes and Noble, at Amazon, We’re In This Together:  A Caregiver’s Story and on Rob’s website.  This post is a summary of a twitter chat #HCHLITSS with Rob conducted on May 30, 2013 and personal communication.

Trying to Change the World for the Better: Meet Medivizor

“Medivizor’s vision is to improve the lives of people with serious medical conditions and those who care for them and to effectively medivizorapply software and the social web in the field of health for the betterment of humanity. This might sound like a lofty goal, and indeed, it is. We want to change the world for the better!”

As one satisfied patient, AnneMarie Ciccarella has pronounced, “Step Aside Dr. Google:  Enter Medivizor.” As the CEO of Medivizor, Tal Givoly describes, “Today, when people become sick, they often use the web to find information.  They find too much information.   Much of it, irrelevant. Much of it, not easy to understand and interpret.   Most frustrating [for them is]  finding something that seems hopeful, and wasting precious time with [their] doctor [only] to be disappointed.”

Within this dilemma, is Medivizor’s purpose. Medivizor provides medical and health information, vetted by physicians, to subscribers.  That information is personalized to their specific diagnosis  and delivered to them on an ongoing basis. Medivizor takes the futility out of the web search.

And the best part about it:  It’s a free service.

“It’s a subscription service. You sign up once, begin getting information from then on. That’s another key attribute,” relates COO Ronen Keinan. Ronen  Right now, the service supports breast cancer, prostate cancer, colorectal cancer, melanoma, and diabetes and is adding more diagnoses as they grow.  Even if the service doesn’t support your diagnosis now, “You can sign up now and put in your primary medical condition – and we’ll let you know when we add support for it,” Mr. Givoly states.

The first question you might ask is, “How are they doing this?”

Tal“We have a medical staff that’s overseen by our Chief Medical Officer.  Some review is automated and some human–physicians and PhD’s–that do peer-reviews, ” Mr. Givoly states.  Medivizor relies on content from PubMed.  “We strive to provide ONLY relevant information in words most can understand and act upon….The information is intended to provide value to the patient and or caregiver (and medical team). We develop a medical profile for the individual.  Then we semantically match new information according to that meta-data,” Mr. Givoly explains.

The health information provided is explanations of cutting-edge medical and scientific research, notifications of matching clinical trials,  lifestyle tips, community resources, and relevant treatment options. “Decisions of whether to include content is a medical team decision that gauges level of evidence and user interest ,” Mr. Keinan says. 

As Ms Ciccarella states, “A big part for me?  It’s interactive.  I let them know if information is helpful or not and why.”  And Medivizor respondsaacr to feedback.   

Medivizor’s formative team includes Tal Givoly, Chief Executive Officer.  Mr. Givoly was Chief Scientist of Amdocs (DOX), where he headed up innovation activities across the $3B company. Before that he held leadership positions in product management, software and product development. Ronen Keinan is their Chief Operating Officer. Keinan has 20 year of experience in high-tech and was most recently the Vice President of Portfolio Management at Nokia Siemens Networks (NSN).  Oren Fuerst, Ph.D., Chairman of the Board,  is a seasoned entrepreneur, investor, and author. Dr. Fuerst built, and continues to lead a number of companies focusing on medical devices and health informatics.  Prof. Steven Kaplan (MD) is the Chief Medical Officer. He is Chief of the Institute of Bladder and Prostate Health at Weill Cornell Medical College and also serves as Director of the Iris Cantor Men’s Health Center at New York Presbyterian Hospital.

The motivation for starting Medivizor comes from life experiences of its founders. “Each of the founders had a personal perspective and they knew each other over time and came together. For example, Oren Fuerst was a caregiver for his mother’s cancer and experienced the information problem first hand. Even though he was very knowledgeable and well-connected, it was just overwhelming and impossible to keep track.”  Mr. Givoly relates.  “Prof. Kaplan, a world-renowned doctor and researcher, has people coming in every day with irrelevant Google printouts.   And I saw good friends cope with their young child’s leukemia and what they had to go through in terms of medical research.   We got together and built the product/service/team to solve the big problem:  That medical information isn’t personalized.  That despite the enormous amount of information, finding ‘the right stuff’ is simply ineffective and inefficient.”

At this point, the start-up is a labor of love.  They are searching for ways to keep the service going but they are certain of one thing, “Medivizor is not intended for marketing,” Mr. Givoly states.  “There’s a lot of great information on web and  a lot of marketing.  Medivizor is not intended for marketing.” The founders are using three models to obtain some return on investment, first, “premium services to be introduced in future, second, licensing of software to medical professionals and third, referrals (clinical trials, treatment, etc.). But, business is not determining the information that is provided,” Mr. Givoly reiterates.

“What we provide is unique in many ways. First, is that it is truly personal: The user doesn’t “search” for information; they get information just relevant for them. We know enough about the person to do so. We sift through all the information and find what’s relevant, couple this with our medical team insights and the social web (crowdsourcing). We are HIPAA compliant and safeguard user data!” Mr. Keinan states.

“When I went to sign up,” says Summer Plum, a patient subscriber. “It immediately recognized Ehlers-Danlos (a rare genetic disorder characterized by extremely loose joints, fragile or stretchy skin, a genetic disorder) which is novel and nice.”  Ms. Ciccarella notes, “I use it for me and for my mom with metastatic breast cancer. It’s useful and helpful.  I am thrilled with the site…. “

Making the content of journal articles accessible to everyone is a challenge.  “We aim for 10th grade English. We may personalize based on literacy in future. We take it down from, literally, Flesch-Kincaid grade levels of 18-22 down to 10. That’s a gap.”   To deal with this difficulty, they have added a “help box.”  Ms. Ciccarella remarks,  “There is a “helpful” box to interact back.. .if enough people said, ‘HUH?’ they would rewrite and resend information.  I have returned questions in the “helpful” box …. and got back a clarification of the information.”

“We intend it to be suitable for both the e-Patient and the average person. The balance is delicate, I admit. ” Mr. Givoly states. “However, data we’ve seen suggests that it does include ~90% of US adults.”

The company has a long list of conditions they are working to add.  “We’d like anybody coping with a serious or chronic medical condition to add Medivizor to their tools.   We believe strongly in being smart/engaged patients. Medivizor can help save time/effort and focus medical information checking.   Medivizor provides you info and ongoing updates specifically for your situation, as new things become available. If you want to know when we support a condition of interest… You can sign up and put in that primary medical condition – and we’ll let you know when we add support for it,” Mr. Givoly adds.

I can only say one thing: It’s not the same as anything out there. Clean interface and ongoing information.” says Ms. Ciccarella.  Dr. Gia Sison, a physician recently turned breast cancer patient agrees, “Once people try it, you truly appreciate its usefulness!  Just signed up. Nice website and easy to understand both from a doctor/patient point of view.” 

Patients can use the information and resources they receive from Medivizor to collaborate with  their local primary care physicians.  However, Medivizor doesn’t provide medical advice, nor does it replace a person’s medical team – it supports it.  Users can simply share what they get in Medivizor directly  with the ‘share with doctor’ feature. 

Ms. Plum says, It does take an immense amount of personal knowledge to be able to sort through all the information available [on the web]. ”  Mr. Givoly agrees, ” That’s one of the challenges we try to address: Simply what you need to know….We try to package that and we try to help build on knowledge.  Provide general knowledge and then become more specific. So it’s gradual.

Dr. Sison agrees, “In this world of medical information overload on the net it’s vital to have a one-stop hub for all (healthcare professionals/patients).”  Ms. Ciccarella states, “The site is FOR patients. Helps us be better members of our medical teams. We can ask the right questions and make best use of doctor’s time.”

Patient Advocate, Claudia Nichols states, “I see Medivizor as a clinical resource for my practice!”

 “We strive to provide as much transparency as we can.  Our mission is truly to make the world a better place by applying software and the social web for the betterment of humanity. We take great care to protect our user’s data and privacy.    We do not share personal information with others without explicit consent of the users. Best scientific evidence is always the prime consideration when sharing information with users. If there are controversial matters – we coach to reflect that.  If anything is ever sponsored, we would, obviously, make it very plain to see that.  Bottom line – we are trying to do good and avoid tarnishing our reputation. “

In the end, patient endorsements speak to Medivizor’s value.  As Ms Ciccarella states, “I can’t say enough about the service! “

Based on the twitter chat #HCHLITSS Health Communication, Health Literacy and Social Sciences

Bringing Back the Story: Wellbound Storytellers and Health Empowerment

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The Navajo Sugar Monster

Long ago the Holy People predicted that a monster would take over the Navajos.

Our mothers and fathers would change…No longer were man and woman together.

One after another this monster ate away their faces.

It gnawed away Navajo identity….Everything turned from light to dark….Words ceased to exist.

The Holy People begin to cry.

The Navajo language meets its end…Mouths would soon close entirely.

X marked the spot….Over the eyes and mouths of the people.

The Navajo were not human anymore.

They were beings who craved only one thing

It was not water or food…Nor prayer or traditions…Nor love or family.

The Holy People were right.

Sugar is our monster.

A killer claiming Navajo lives…With a craving that could never be satisfied

Who are these monsters?

Mom? Dad?  Where are the elders? Where is my family?  Who will save us?

It’s going to claim the next generation if things don’t change…

We must stand and make a change…Stand up and fight against this monster

For you…For your family,

Your mother, Your father, Your children

For your Nation.

by Chantelle Yazzie (A neo-traditional story published on Wellbound Storytellers.)

Stacy Braiuca is one of the Native Americans writing for Wellbound Storytellers.  “There are currently 11 ‘Wellbounders’ all over the country, all different Nations, ages, backgrounds.  We try to write about strengths and weaknesses in our journey.  Not only are we trying to be a group of leaders to start a movement of storytelling, but storytelling is a natural fit to health empowerment.”

Just a year old, The WellBound Storytellers “blog is specifically trying to use storytelling to empower people, ourselves and others, on our health journey.”  Indeed, storytelling is essential to the wellness of native people.  “We have always told stories to pass our values, lessons, and learning to the next generation,” Ms Braiuca relates.

Ms. Braiuca is a Clinical Social Worker and Public Health educator. She works full time as a Research Associate for thewpid-Photo-Mar-22-2012-941-PM Center for American Indian Community Health and Healthy Living Kansas at the University of Kansas Medical Center, working on research projects about cancer, obesity, and health literacy.  She is a member of the Citizen Potawatomi Nation (hence CPN).   According to the CPN website, “The CPN are Algonquian-speaking people who originally occupied the Great Lakes Region of the United States.  Originally the Potawatomi were part of the Three Fires Council made up of Potawatomi, Ojibwe and Odawa, collectively known as Anishnabek peoples.”

Staying connected to one’s heritage is important to health according to Ms. Braiuca.  “Citizen Potawatomi Nation has members globally. They have the first population representative legislative government of contemporary Indian Nations.  We live everywhere are all connected via …  CPN FaceBook pages and CPN website.”

“Native Peoples sharing their journey to wellness”is the tagline for the Wellbound Storytellers blog.  And the journey to wellness is definitely needed among Native People.

According to the Indian Health Service of the US HHS Fact sheets, native peoples have a lower life expectancy than all the races of the US.  The leading causes of deaths according to 2005-2007 data, are heart disease, cancer, unintentional injuries and diabetes.  Native Peoples have higher rates of death by alcoholism (552%), diabetes (182%) and unintentional injuries (138%) than other Americans.

Ms Braiuca points to history in explaining much of the health disparities that plague Native people.  “Native health is a concern in all health areas. Disparities are woven into [our] history [as a result of the] 500 years of Colonial policy debacle.”  The issue of trust in western medicine is key among native culture “for example smallpox blankets, commodity food, Indian Health Service, reservations, removal [and] because traditional healthcare [has been] taken away,” Ms. Braiuca recounts. In fact “diabetes, cancer, and loss of culture and [traditional] medicine and language are tightly woven,” she says.

Native American genetic make up was not designed for Western diet and cultural habits.  Diabetes is a major health problem among native people.  The reasons vary but include “lack of prevention, poor healthcare and commodities like flour and sugar and lard, used to make fry bread which is not a traditional food!”  Traditional foods are the “three sisters– corn, squash, beans– and wild rice, fish and wild game,” Ms Braiuca says.

Another risk factor for Native people is smoking.  “We have the highest rates of smoking of any population in the US, over 40%,” Ms. Braiuca states.  However she is clear that this problem is connected with the recreational use of commercial tobacco, not from traditional, sacred uses.

Because of the issues of mistrust, any prevention effort must be community based. It is “imperative to [have] buy in of the community… plus LONG relationship building,” she says.  Part of the problem is a lack of native specific research which is hindered by tribal sovereignty, health systems and issues of trust.  The Center for American Indian Community Health, where Ms. Braiuca works, is one of the few places in the country doing community based research with Native Americans.

The Wellbound Storytellers blog employs all kinds of technology “oral/audio, video, art,  and written” to get their message across.  Most of the stories are neo-traditional “as in tradition being born but also recalling traditional stories,” Ms. Braiuca clarifies.  This is because traditional healing stories are unique to particular nations and these stories can only be told by certain individuals, elders.  Lamsam-Teresa-1449-5x7-color-qty001

According to Teresa Lamsam, another Wellbound Storyteller, those specific  individuals have a responsibility for the story. “Most of the stories that would be relevant [to healing] are considered to have healing within the telling of them — which is what creates the responsibility for the person who carries the story.  The person who receives the story also has responsibility.  Usually, a ceremony must accompany the story.”

Bringing back the story to heal is the message of the Wellbound Storytellers.  “Storytelling is not just limited to the younger generation listening to the older one, it is perfectly appropriate to flip that script.”  And that is just what these storytellers are trying to do.

“A Needed Response”

Public health is about keeping people safe…be it through immunizations, assuring clean water or preventing gun violence.  Here is another safety issue we need to address:

A story about a friend…

There was once a very protected girl.  She did not date until she was 18.   She was an innocent.  She told the boy that she was dating that she would not have sex until after marriage.

She shared champagne with this boy and drank too much.  The next thing she remembered was going to the bathroom, feeling pain and seeing bright red blood.

The boy said to her, “I’m so glad I was the first.”

She continued to date this boy….thought she had to marry him.  She almost took her life.   Only with counseling did she realize she had been date raped.  She broke off contact with the boy.  She spent years in therapy.

He  became a successful physician.

Watch this incredible video with an important message.  It should be part of every boy’s and girl’s education.

From Outrage To Action: Dian (CJ) Corneliussen-James and METAvivor

“I started METAvivor out of outrage.”

Dian (CJ) Corneliussen-James Co-Founder of METAvivor Research and Support, Inc

Born from the outrage of four women, METAvivor Research and Support, Inc. is a non-profit with a purpose–To increase research funding for metastatic cancer.

Dian (CJ) Corneliussen-James  is one of those women.   A self-described shy child, Ms. Corneliussen-James  (or CJ as she likes to be called) is anything but retiring and reserved.  Raised CJby a progressive cause-oriented Pastor father and reserved Quaker mother, CJ got a taste of traveling as an exchange student in Germany 1968-9 and Rotary Fellow in Austria 1972-3.  After getting a masters degree, CJ joined the Air force in 1979 “to pay college loans.”  She stayed with the Air Force for 24 years.  “I had a great life– variety, travel, pay and promotions.”  During her time in the Air force she tracked and analyzed Soviet satellite activity, collected information against the Eastern Bloc, served as intelligence lead on the Joint Chiefs of Staff for the Somalia Conflict and resolved the cases of Americans lost during the Vietnam and First Gulf Wars.  In 2003 she retired as a Lieutenant Colonel and began a second career in the civil service as the Senior Intelligence Officer at the Defense Prisoner of War/Missing Personnel Office.

Three months after a clean mammogram she felt a lump in her breast.   Her world changed with the diagnosis of stage II breast cancer. . “Surgery, chemo, radiation, pills…Welcome to the Pink World,” CJ quips.   Her career was cut short with a subsequent diagnosis of systemic lupus and the spread of breast cancer to her lung – all in a period of 19 months.  She’s had a lobe of her lung removed as well as continuous chemotherapy since then. This year she had surgery for the collapsed remaining lung. “Recently a former HS teacher said I was the only one she knew who has been reincarnated several times in one life. “ CJ stated.

Although she retired, CJ didn’t stop working.  She turned her analytical mind, vast experience and understanding, to her disease and began to search for research on metastatic breast cancer (MBC).  What she found was a dearth of research on metastases of breast cancer and on metastases of all other cancers.

What are metastases?  People who have Stage IV cancer have metastatic disease.  Metastases means the spread of a cancer from the place of its origin, be that skin, breast, blood or lung, to other url-1organs throughout the body.  “The public doesn’t even know what mets is. Say you’re stage IV and they ask when will treatment end. The Answer: When I die, “ CJ explains.

“A few cancers kill without metastases. Ninety percent (90%) of  metastatic cancer patients die of metastases. One hundred percent (100%) of metastatic breast cancer patients die of metastases,” CJ states.

Why is there so little research on metastases?   CJ found that most of the funding from donations and taxes has gone to early detection, prevention and treatment.  “In the US only 2% of research funds goes to Stage 4 cancer….One study showed the American Cancer Society gave ALL stage IV cancers 2.3% of  its research budget in 2010. The Federal government gave 0.5% to stage IV cancers in 2005. “  The same is true for other organizations. “ACS, Komen, Avon, NBCC , ALL focus their funding on prevention and have NEVER defined CURE.”

Yet people are dying from metastases. “Prevention and treatment have failed to make a difference for most cancers.  Only lung and colon cancer have seen improvement…[with this type of funding.] “ CJ states.

CJ began making contacts, asking questions and collecting information.   Her quest led her to friendships and working relationships with well-known researchers and cancer advocates such as Danny R. Welch, Ph.D. and Clifton Leaf.  There are “Superb Stage 4 researchers and proposals.  But if [they are] funded at only 2%…they can’t do much with that, “ she says.

CJ’s physicians also sent other people with metastatic breast cancer to her for support.  She was shocked to find that virtually none of the support, research or activities that typify the very successful “pink” breast cancer movement extended to the metastatic breast cancer community. “People don’t like to think about stage IV. Too depressing. We’re in the closet…Breast Cancer events don’t address Metastatic Breast Cancer.  [These organizations] think it will dampen mood. No Metastatic Breast Cancer speakers, topics or literature. Metastatic Breast Cancer questions [are] avoided, “ CJ explains.    Metastatic cancer patients are not welcome at many support programs. “Newly diagnosed [MBC] patients not infrequently approach Breast Cancer groups for support.  Unfortunately, these groups often suggest to MBC patients that they are not welcome, or that they must not mention their diagnosis to the others for it would be too frightening for them in their fragile condition.  This can be devastating.”

However  CJ believes that Metastatic Breast Cancer patients are really better off with other metastatic patients.  “In all honesty,…only other MBC patients can provide true insight, advice and understanding.  Discussions concerning mastectomies, lumpectomies and getting through treatment to return to normal life are not helpful and only serve to remind the MBC patient that she has a much more difficult road ahead.”

In 2007 CJ officially established a local support program in Annapolis Maryland that within six months grew to 24 members.

Soon she was looking for ways to increase funding for metastatic breast cancer research.  “METAvivor was created to fill a critical gap in Awareness, Research and Support.  Many don’t realize stage 4  needs and the disparities in support and research.  Educating people is critical.”

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CJ and three other women who were part of the support group she had established in Annapolis created METAvivor in 2009.  “We had to be a nonprofit to raise funds.  The four of us followed the free non-profit checklist on Maryland’s state government site.  Our Goal was to do everything possible free or donated.”  And they achieved this:  METAvivor  is 100% volunteer and a 501c3.

Two of the four women who worked together to create METAvivor  died during its first year of existence.    “Patients are so devoted they work with us until weeks before death.  We would never ask or expect it, but they do.  [METAvivor is that] Critical…to them.”

One of the main problems with metastatic disease is finding the numbers.  “Numbers a HUGE issue. There is no code for Metastatic Breast Cancer. It is counted only if the person’s first diagnosis is stage IV.  There is [clear indicator] how many live with stage IV.   Others try to down the numbers. Stats are very hard to find.”  Yet even with people who are first diagnosed with stage IV cancer the figures are shocking, “One third of cancer patients die annually, most from metastases.  Stage 4 research needs one third of the research funds, not 2%.”

METAvivor expanded its support function and now helps people elsewhere establish their own support where programs are lacking. “The problem is that Stage 4 patients have unique needs.  They need dedicated Stage 4 SUPPORT.  We can combine with other Stage 4 cancer patients, but not with primary patients. “   Sadly there are only 40 support programs nationwide for MBC patients, ten of these in NY State.  “The vast majority of patients have nothing ,but MBC has far more than most stage4. It’s TRAGIC,” CJ states.

CJ and others at METAvivor are on a quest.  “For us this isn’t optional.  We are driven by a critical need and  a mission no one else does.  We can’t stop until we get proportionate research and support.”

CJ and METAvivor know that research on metastases in all cancers  is needed.  “Research for breast cancer does little to nothing for me. Research for stage IV anything DOES help me and all stage IV [cancer patients]. This is [the] critical point.  Progress in any stage IV cancer research helps other
stage IV cancers. We want stage IV research across board,” CJ states.  “This is a stage 4 problem…we need to rally the stage IV community of all cancers and have the healthy community help raise our voices … say enough already!  Help us promote 30% for 30%! They are welcome to 70% to use as they wish. No new money …need to redistribute.”

METAvivor created their ribbon in order to involve all metastatic cancer patients.  “Our Ribbon’s Ribbon_whitelinedblue/green base means stage IV. We hope other stage IV groups will use our base and replace pink with their color to show our common bond/cause.”

People with metastatic cancer need those who are not sick to speak up. “Everyone has challenges. I’m in remission and retired but help my 96year old mum and I have a husband newly diagnosed with cancer and I’m in ongoing treatment…

METAvivor Inc  is 60 percent patients and 40 percent not. All have challenges. Some live alone. Some are quite ill. Some are overworked. But all highly devoted,

We need more non-mets help pushing fairness for all terminal cancer.  It’s [healthy] people… that will help achieve parity in research.  Be vocal. Challenge organizations to increase research. “

To this end, METAvivor is starting an ambassador program.

“We will have teams nationwide, broken down into 11 regions, working on building awareness and promoting increased research for MBC and simultaneously for all stage IV cancer. …I am currently working with a very small team to build a comprehensive plan… In the meantime, if people wish to express their interest…, they are welcome to email their contact information and geographic location to me at cj@metavivor.org.

METAvivor has an extensive and growing awareness program with annual campaigns such as 30% for 30% (2011) and the Elephant in the Pink Room (2012).  It also offers donors the rare opportunity to donate exclusively toward metastatic breast cancer research and have 100% of their donation used toward that end.  METAvivor is in its fourth year of awarding annual metastatic breast cancer research grants and by the end of 2013 will have awarded more the one-half million dollars.  CJ served four years as President of METAvivor, stepping down this year to have more time to focus on her area of passion – advocacy.  She now serves as METAvivor’s first dedicated Director of Advocacy.

For more information please read  CJ’s post on 2% research http://t.co/KMdy1xO6o0 and her post on 30 for 30: http://t.co/0qCJ71tKPq

Based on March 21, 2013 transcript of #HCHLITSS twitter chat.

The Power of Patient Blogs: A Window Into the Lived Experience

“Patient blogs reveal the true extent of the impact of cancer on finances, work practices, family life…they offer a window into the lived experience of the patient.”

~Marie Ennis-O’Connor

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When you are 34 years old, lecturing and working in Public Relations and Marketing at a University, you aren’t thinking about cancer.  Yet in 2004, Marie Ennis-O’Connor suddenly had to.  Her life changed with her diagnosis of breast cancer.

In a recent post on the International Journal of Public Health website, this Irishwoman writes, “A cancer diagnosis is not just a single event with a defined beginning and end, but rather a diagnosis [which] initiates a survival trajectory characterized by on-going uncertainty, potentially delayed or late effects of the disease or treatment, and concurrent psychosocial issues that extend over the remainder of a person’s life.”

The uncertainty, delayed effect of the disease or treatment and the possibility of recurrence are all part of the limbo that cancer patients experience after treatment.  “People think your story ends the day you walk out of hospital after your last treatment, but in many ways it is just beginning.”  This aspect of survivorship is not understood by people who have not had cancer, e.g., family, friends and especially health care providers.

And this is Ms. Ennis-O’Connor’s passion–to change  the  care that cancer survivors receive. “There is sometimes a code of silence about what happens after cancer treatment ends.   I wanted to break the silence and provide a safe space for cancer survivors to share their experiences after cancer.   There are good things, but there are also times of grief, loss and confusion – I want those stories to be heard.”

Ms. Ennis-O’Connor suggests that healthcare providers need to change the way they  care for cancer survivors.  She believes that the blogosphere is a place for providers to begin to understand survivorship. “Patient blogs have huge potential to inform healthcare practice.  Patients’ own narratives shed light on cancer’s social impact on the individual, family and society, often in a manner that illustrates in profound and evocative terms… a window into the lived experience of the patient.”  By reading these blogs, health care providers can attain an appreciation of life with cancer from diagnosis through survivorship.   “Perhaps they [healthcare providers] will discover gaps between what they assume patients think or feel and what we actually do think and feel.  [Blogs] can be a valuable tool to close the communication gap that can exist between patient and doctors and healthcare practitioners. “

Ms. Ennis-O’Connor started her award winning blog in 2009.  Now  Journeying Beyond Breast Cancer has over 600,000 views and over 4000 followers.  “Writing my blog has been the single most empowering thing that I have done in my journey with cancer,” she says.  But the blog has been much more , it has brought people together.  As fellow blogger, Anne Marie Ciccarella states, “[Marie] introduced my blog [Chemobrain, In the Fog with AM from BC] to many bloggers…[The] Breast cancer community was facilitated by ‘Journeying Beyond Breast Cancer.’ Every Friday [Marie] wrote a “Round Up” and SHE brought an entire community together.”  Ms. Ennis-O’Connor has written this weekly review of blog posts in the breast cancer blogosphere since late November 2010.

Screen Shot 2013-02-04 at 3.31.36 PM“[Blogging] has enriched my experience, brought new friendships into my life and expanded my horizons like nothing else,” Ms. Ennis-O’Connor states.  Indeed, she is a board member of Europa Donna Ireland –  The Irish Breast Cancer Campaign , an advocacy group that is one of 46 EUROPA DONNA member countries across Europe. She has become the social media manager of the newly formed Dublin chapter of the Global Health 2.0 movement and she has just started the first breast cancer social media chat on Twitter in Europe #BCCEU. 

According to Ms. Ennis-O’Connor the benefits of blogging are numerous.   “Blogging increases social support, self esteem and empowerment.  Blogs offer an online place for expression of emotion, [and] information exchange…Blogs bring about a sense of community. Blogs make you feel like you’re not alone, that someone else understands what you are going through.”

During cancer treatment, there is a plan and significant support from family and friends.  But “when my cancer treatment ended [the] full impact of what had happened hit me –[I] needed more support,” Ms. Ennis-O’Connor states.   Yet there was little information on the chat forums and websites about the “limbo” in which she found herself.   Integrating the experience of having cancer and surviving it is something for which patients are not adequately prepared.   Now, at least, there are blogs that describe the experience, led by Journeying Beyond Breast Cancer.  But there needs to be more and Ms. Ennis-O’Connor is an activist working toward that end.

“Cancer can be frightening and lonely,” Ms. Ennis-O’Connor states. “Being able to write about it honestly and connect with others is a powerful release.”  Ms. Ennis-O’Connor turns to a favorite quote by Rebecca Fall to describe the importance of patient blogs.” ‘One of the most valuable things we can do to heal one another is to listen to each other’s stories, ’”she quotes.  “Patient blogs represent the complex and widely diverse range of cancer experiences. Sometimes just the very act of having our story heard and acknowledged can go a long way towards healing.”   

*Based on #hchlitss twitter chat and email communications.

Do Nurses Eat Their Young? What’s Wrong With Communication in Health Care?

The Workplace Bullying Institute defines Workplace Bullying as repeated, health-harming mistreatment of one or more persons (the targets) by one or more perpetrators that takes one or more of the following forms:

  • Verbal abuse
  • Offensive conduct/behaviors (including nonverbal) which are threatening, humiliating, or intimidating
  • Work interference — sabotage — which prevents work from getting done

040811_020 retouchedRenee Thompson, MSN, RN, CMSRN, nurse, author, educator and advocate for workplace change, is making it her mission to bring nurse bullying  to light.  In her question “Do nurses eat their young?” she shocks us into awareness of nurse bullying.  “I’ll do whatever it takes,” she asserts. “Enough of us who believe in kindness, support and nurturing each other can do it!  New nurses (and the rest of us) deserve to work in nurturing supportive environments…Bullying has no place in a profession dedicated to caring and compassion.”

So what is wrong with interpersonal and organizational communication in the health care setting? Bullying.  Why is bullying happening?  One theory suggests that since nurses are not valued in the workplace they feel powerlessness.  This results in bullying behavior.  Another points to nursing as a predominantly female profession with a forced hierarchy.  In this model, the cause of bullying lies in female competition for prized males.

Despite these notions, or perhaps because of them, Ms. Thompson speculates that medical and nursing school education may start the process. “Doctors and nurses learn separately, then are forced to work together without training. We wouldn’t do that with an All-Star basketball team,” Thompson says.  “Respectful communication is a skill that can be learned and it is just as important as clinical knowledge.”

Yet it is missing from the beginning.  “Nurse sand doctors don’t learn how to communicate respectfully with each other. Student nurses are not even allowed to speak to doctors when they are learning.”  It makes sense.  “When members of a team learn together, they learn to respect roles and work together.. all working towards the same goal…patient care.”

Research literature describes  nurses “as an occupational group, at considerable risk of violence-related workplace trauma” and recounts experiences of “harassment, bullying, intimidation and assault.”(1)

In her own research for her book, which Ms. Thompson conducted while developing student and new nurse residency programs, she heard horrific stories. In her research she encountered recurring themes. “Students and new nurses are the most vulnerable, but any time you change positions, you are at risk. We are still trying to sabotage, especially when the female is younger, thinner, more beautiful and smarter. While nurses are caring to patients, they can be horrific to each other.”

NursingA study of bullying published in Journal of Professional Nursing in 2009 reveals which departments  in hospitals were most likely to have bullying incidents and who were the perpetrators.  The medical-surgical and critical care units had the highest frequency of incidents at 23 and 18 % respectively.  Bullying incidents occurred within nurses’ first 5 years of employment.  Senior nurses were the highest percentage of perpetrators at 24% followed by charge nurses, nurse managers and physicians (8%).   This research confirms Ms. Thompson’s observations.  “Nurses know we eat our young.  Some nurses think it’s good to “toughen up” the new nurses. In reality it’s not. It decreases confidence and competence. “

In fact it seems to be a vicious cycle.  Those who are bullied lose their confidence and are more likely to be targeted.  Ms. Thompson identifies passive communication styles, like “frequent apologizing, avoiding conflict by keeping quiet, giving others priority” as characteristics of victims.  Other characteristics included being of a different gender, race, or from a different location.

Ms. Thompson has witnessed workplace bullying in the nursing profession.  The behaviors range from“overt-screaming, yelling and openly criticizing in front of others to covert-sabotage, backstabbing and undermining.” Bullying can be as simple as “being nice to your face, but then complaining about you to other nurses all night” or as complicated as “gathering a “posse” against you.”


A 2006 article in Nurse Inquiry suggests that there may be hidden processes at work causing nurse-to-nurse bullying.  The authors propose that health care organizations may actually be maintaining the status quo, recruiting nurses who support a top-down hierarchical structure.  Ms. Thompson uses an Italian saying “the fish rots from the head,” to describe her understanding of what is happening. She believes that many organizations rely too heavily on policy to solve bullying.  Without a robust program, zero tolerance policies don’t work. “Policies don’t solve problems – people do,” she notes.

Bullying can impact patient care.  “Organizations with a high rate of bullying have worse patient outcomes.** Many studies demonstrate bullying prevents nurses from asking for help and calling docs at nursing_02.sized3am,”  Thompson observes.   “I  know some nurses who feel they can’t rely on co-workers if they need help for patient.” Nurses who are bullied suffer physical, emotional and mental distress which is disabling, impacting their ability to effectively care for patients.  “Bullying is pervasive, destructive and nurses are suffering all over the world. I know because they call me!”

Patients are becoming aware of nurse bullying. They are asking questions about it. “They’re on to us! “ she says.  And Ms. Thompson is glad. “Awareness is vital to change. The first step for organizations is awareness. You have to know how bad it is first before you can take action.  We get numb to bad behavior, accepting it as normal. Too often we believe what the bully tells us.”

The most powerful intervention to stop bullying, she notes, is for witnesses of bullying to speak up. “We need to teach people how to establish peer-to-peer accountability.  A simple way is to just starting naming behavior. ‘You are screaming and yelling at me in front of others.’” Thompson proposes “skill development for managers and strong human resources partnerships.”.

StopBullying It sounds a lot like personal courage is key.  “What you ignore – you condone. It doesn’t matter if the aggression is aimed at you or someone else… Set behavioral expectations. You can’t assume everyone knows what respectful behavior looks like. So spell it out….[It’s true] confronting might not work. But not confronting NEVER works. We have to try.”  In speaking up, Renee Thompson has decided to do just that!

For a detailed discussion of this topic, see the transcript of the #hchlitss twitter chat that this summary is based on.

Several chat participants requested seminar information from Renee.  Please visit Renee’s seminar information page at http://rtconnections.com/events-2/bullyproofing-communication/ to learn more about her upcoming seminars in:

  • Irvine, CA: February 7th and 8th
  • Orlando, Fl: March 14th and 15th
  • Raleigh, NC: April 24th and 25th
  • Atlantic City, NJ: May 22nd and 23rd

If you are interested in reading Renee’s book, Do No Harm both the hard copy and the Amazon kindle version can be accessed at http://rtconnections.com/products/book/

1) Vessey, J., DeMarco, R., Gaffney, D., Budin, W. (2009) Bullying of Staff Registered Nurses in the Workplace: A Preliminary Study for Developing Personal and Organizational Strategies for the Transformation of Hostile to Healthy Workplace Environments Journal of Professional Nursing, 25, (5) , 299-306.

2)Hutchinson, M. Vickers, M. Jackson, D. Wilkes, L. (2006).Workplace bullying in nursing: towards a more critical organisational perspective.  Nursing Inquiry 13,( 2),  118–126.

**Aleccia, J. (2008).  Hospital bullies take a toll on patient safety.  http://www.msnbc.msn.com/id/25594124/ns/health-health_care/t/hospital-bullies-take-toll-patient-safety/#

http://www.workplacebullying.org/individuals/problem/definition/

$375 Billion Worth of Value: Family Caregivers

“There are four kinds of people in this world: those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers.”

Rosalyn Carter

First Lady Rosalyn Carter is both philosophical and truthful when she describes caregivers.  There are 66 million adults in the US who are unpaid caregivers–nearly 30% of the adult population!

The Canadian Institute for Health Information estimates that there are 2 million unpaid caregivers in Canada. 

Caregivers are defined as either formal or informal. Unpaid caregivers are the informal type, helping others who, due to

photodisability, chronic disease or cognitive impairment, can’t perform essential activities on their own.  Informal caregiving is  performed by family members, neighbors and/or friends, often at home.   Natrice Rese is one of those millions of caregivers.

She worked in long-term care and home care until 2009 when she started family caregiving for her granddaughter, Maia.  Maia has a rare genetic disorder called Emanuel Syndrome, is developmentally delayed, totally dependent and non-verbal.  A website created by her daughter, Stephanie St. Pierre, provides support and information to others facing this disorder.  As Ms. Rese states, “Family caregivers aren’t just there 8 or 12 hours a day.  They live the job, breathe it, think it, sleep little…they need lots of support…  Caregivers contend with personal feelings, grief, exhaustion, fear, and cannot escape from it.”

PHA cknClaudia Nichols is the founder of Pilot Health Advocates, Inc, a private patient advocacy firm helping consumers navigate healthcare.  As a soon-to-be Certified Senior Advisor, she is keenly interested in how caregivers can be supported.  This support is critical now when  “the task of the family caregiver is swiftly morphing into performing sophisticated skilled nursing tasks, including dialysis management, administering IV’s, wound care (an especially difficult task for amateurs and professionals alike) and other professional skills,” she says.

In the US, the monetary value of services caregivers provide for free, caring for older adults, is about $375 billion per year. This figure is twice the amount spent on homecare and nursing ($158 billion)..  In 2007 the economic value of family caregiving was estimated at $375 billion, a figure that exceeded the total 2007 Medicaid expenditures of $311 billion and approaching total expenditures in Medicare of $432 billion.  That is almost twice as much as is actually spent on homecare and nursing home services combined ($158 billion).

The foundation of care in US and Canada is unpaid caregivers.  Yet these caregivers are at serious risk themselves.

Ms. Nichols notes,”Caregiving is stressful and demanding for both caregiver and recipient.  It is often consumes all free time

Informal/family caregivers are at risk for depression, other stress-related illnesses due to stress, fatigue and social isolation. Economic toll fails to account for emotional & financial impact of caregiving on caregivers themselves.”  Ms. Rese agrees, “Not only do family caregivers provide unpaid care, but they also are out of pocket for incidentals, supplies, medicines, on and on.” Ms. Nichols asserts, “The worst case scenario is that caregivers go bankrupt,have breakdowns, become estranged from other family members, become ill themselves.”

Family caregivers are often thrown into the unknown, Ms. Rese feels.  In Canada, 2007 statistics from the Health Council of Canada indicated that  40-50% of seniors with high needs have distressed caregivers.  These same statistics say 2.7 million family caregivers are over the age of 45, 60% of these are women and 57% are employed in addition to caregiving.  Of those, one third of the cared-for have high needs in mobility, physical and developmental delays and chronic conditions.  Twenty percent of those receiving care at home have dementia, requiring 75 percent more care.

Many caregivers are single parents themselves, usually women with children, and sandwiched between elderly family members.  Seven out of 10 caregivers are caring for someone over 50.

The complexity of caregiving has changed.  According to Ms. Nichols, “nearly half family caregivers performed medical/nursing tasks with for those with multiple imgreschronic physical anad cognitive conditions and 78% family caregivers provide medical/nursing tasks like managing medications including IV fluids and injection.  Caregivers found wound care very challenging, more than a third (38%) wanted more training.” The rationale for their  increased care was a desire to keep their family member out of nursing homes or long term care facilities.

The urgency of the situation for informal caregivers cannot be overstressed, Ms. Rese believes.  “There is a crisis already, no beds to place seniors in, family caregivers running out of steam, lack of funding.”

“There are four kinds of people in this world: those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers,” Rosalyn Carter stated.  Giving caregivers a voice and influencing a political climate that is focused on “cost-saving” is imperative.

The National Family Caregivers Association now renamed Caregiver Action Network is a place to start.  This organization was founded in 1993 by Suzanne Mintz and Cindy Fowler.  This group has truly brought about awareness of the caregiving experience, becoming the go-to organization for anyone interested in learning about family caregivers.  It was instrumental in establishing the National Family Caregivers Month in November and in 2000 the federal National Family Caregiver Support program was established.  Caregiver Action Network’s mission is to “promote resourcefulness and respect” for family caregivers.

As Suzanne Mintz recalled: “We wondered why no one seemed to be focused on the fact that helping a loved one with a deteriorating illness had a very real impact on not only the person with the illness, but also on those of us who were primarily responsible for helping them. We were family caregivers, and we wanted someone to reach out to us, to tell us where to find helpful information and advice, emotional support, and real hands-on assistance when we needed it. NFCA was created to educate, support, empower, and speak up for America’s family caregivers so that all caregiving families can have a better quality of life.”

Does it have to be this way?

My dear dear uncle is at this very minute suffering from bed sores.

Bed sores or pressure sores are horrible.  The skin completely disintegrates…losing layers of skin, exposing tissue under the skin. They are ulcers that are extremely painful and that can be very large.  They occur on skin that has had pressure on it for some time–skin of the buttocks, back and heels are common.  It happens to people who are extremely ill, who cannot turn themselves and must rely on caregivers to turn them, people who cannot take in adequate nutrition. Very vulnerable people.

Even though he has a living will with specific directives that say that extraordinary measures not be used to keep him alive, his wife has had to advocate for those directives to be honored.  There are many factors that are keeping him in the nursing home…one is financial-he has long term care insurance which will cover the cost of his care.  My aunt thinks that hospice care will not be covered by the insurance he has.  Another is that my aunt is elderly, overwhelmed and has poor health literacy.  Her nieces have been doing all they can, long distance, to help her understand all that is happening. But there is no one educating her and helping my uncle where he is.

My mother worked for years at a hospital to reduce the number of bedsores that occurred there.  At the end of her life she got a bedsore in that very hospital.  Hospice was never mentioned by her oncologist.  Also she feared losing the successful pain management that had been achieved at the hospital.  My sisters and I were at the hospital 24/7 to assure that she received the care she needed.  Unfortunately that didn’t help with assuring that she didn’t get a pressure ulcer.  She died in that hospital.

There are ideas for bringing discussions of End of Life and the care that is received out in the open.  One advocate for this is Alexandra Drane with her Engage with Grace website.

There are other advocates in this work: Kathy Kastner is one example.  She blogs at Ability for Life and is beta-testing an End of Life app.

What we need is to get all of healthcare–all patients (physicians and nurses are patients too)–talking about and thinking about how the end of life should be experienced.

Angels In Our Midst 2

Pinktober–never heard this word before starting to use twitter in October 2011.  Now I’ll never think of October in the same way again.  All because of the dynamism of one woman, Rachel Cheetham Moro.

Her advocacy  was born from painful experience and a desire to save other women.  Using her skills honed from a Masters Degrees in Business and Tax from Fordham University and experience working for Ernst & Young as an international tax consultant, this Aussie took on Big Pink, the Susan G. Komen Foundation.  Her summary of the financial shenanigans that are occurring at the Komen Foundation clearly illustrate why people the world over need to re-think their giving.

Yet while she journaled her struggle with metastatic breast cancer– her pain, both physical and emotional–she also gave voice to unsung heroes in her blog Can-Do Women.

A traveler, she visited 40 countries in her short time on earth, her wonder and love of life is apparent for all to see in her writing.  She continued writing even after losing the use of her arm–even during severe illness, she answered emails from people like me.

She has inspired me to continue to advocate for women with metastatic breast cancer and to work to change the Komen Foundation’s direction in its use of funds and to motivate others to support organizations that are really looking for a cure.

Rachel, thank you for being open and alive and giving to so many.  Thank you to her friends, family and her Beloved, for helping her to share her life, her intelligence and her wit with all of us.

 

 

Angels in Our Midst

“The joy of life after cancer”

is the tagline for Toddler Planet, a blog written by a beautiful woman.  Strong, brave, talented, brilliant, loving, funny:  these are words used to portray her.  Blessed is the word to describe us, the recipients of her words.

What happens in the world of Internet connectivity when a young mother, (34 years old), an astrophysicist, decides to stay at home with her children and occasionally consult?  She starts a chronicle of her journey.  She teaches and shares her knowledge of space and science with others through writing.  She has fun with her little boys, age 2 1/2 and 5 months.

“The joy of life after cancer”

The momblog that she creates is terrific: full of life, full of hope, full of the challenges she faces with a toddler and a baby.

Only when her mother-in-law is diagnosed with breast cancer, does the young mother pause.  She’s been so busy, so involved with living and giving.  She’s been breastfeeding her 5 month old since he was born but something is different this time around.  Why is her baby unwilling to suckle her right breast?  Why does it look “different”?

Doctors visits later she finds out that she has Inflammatory Breast Cancer; a rare and dreadful form of an already terrible disease.

Her answer to this diagnosis is to educate others, to let us all know of her journey.

“The joy of life after cancer”

She journals her feelings, her struggles,  her love, her delight in her children, her pain and she endures beyond the prognosis of the disease.  Even with bone metastases, there is still hope.

“The joy of life after cancer”

Chemotherapy, radiation therapy, exhaustion, clinical trials, pneumonia; repeat.  Four and one-half years…

“The joy of life after cancer”

Her final entry, written as a conversation between herself and her beloved husband, is  about bringing hospice into their home.

Go to her blog, learn from her, pray for her husband and little boys, read and share and advocate for a real cure for breast cancer.  And remember, the tagline

“The joy of life after cancer”

Susan Niebur died February 6, 2012. @whymommy

 

Memorial Day Weekend 2003

At four in the morning, she got a phone call from her sister-in-law, “Your husband is in the Neuro-Intensive Care Unit here.  You better come right away.”  She hurriedly gathered her 2 year old son and drove for two hours in a daze.  At the hospital, her husband was on oxygen, had tubes coming in and out of his body and was semi-conscious.  Family members were called and coming from all over the country.  Bewildered and confused she kept asking herself, how had all this happened and why?

Percent of adults who binge drink per state

Recently the Centers for Disease Control published a study  about binge drinking in the United States. According to the report, there are more than 38 million US adults that binge drink.  This over-consumption of alcohol occurs about 4 times a month with as many as 8 drinks per binge.

Binge drinking is defined differently for men and women.   For men the number is 5 or more alcoholic drinks or women 4 or more drinks within a short period of time is binge-ing.

The average largest number of drinks consumed by binge drinkers on an occasion

Although the 18-34 year old age group contains the most binge drinkers, adults 65 and up binge drink the most often.   Another interesting fact is that the income group with the most binge drinkers makes more than $75,000.  Yet those earning less than $25,000 drink the most during binges and binge drink the most often.  Finally, most of the people who drink and drive are binge drinkers.

A traumatic event is obviously something out of the ordinary.  According to experts, we all have “templates” created by our minds.  They are our “expectations,” what we assume will happen based on repeated past experience, basically the established routine. You don’t  have a “template” for a traumatic event. It is completely random, outside anything familiar.  That means it requires a lot of cognitive energy to interpret.

At 4 in the morning, my friend’s normal routine is to be in bed, fast asleep.

Her husband survived the automobile accident with the 19 year old girl who’s blood alcohol level was .19%.  That 19 year old ran a red light and T-boned the other driver’s car.  She’d been binge drinking and  she walked away from the accident unscathed.  He still lives with PTSD and physical results of the accident.

Resilient?

Just a random thought…

Have you heard people say

Children are resilient…they bounce back…don’t worry about them…?

I have and I just want to say to those people

If children are so resilient, why are so many adults in therapy?

Save A Life

This time of year reminds me of the time I taught an introductory course in persuasion at a nearby university.  I don’t know why, but a significant number of seniors filled out the roster.  Challenging and fun at the same time, I kept my learning curve just ahead of my students. One day, mid semester, one of my students disappeared.  He just didn’t show up at class.  Being a senior, he needed the hours to graduate.  His loss, I thought, and hoped he studied classmate’s notes for the exam.  Weeks passed…final papers came….and my long-lost student showed up. Irritated, I put on my stern face and asked that he stay after class.  Something, perhaps a guardian angel, stepped in and opened my eyes.  “Are you ok?  I’ve missed you.  What’s been happening?” came from my mouth. “I’ve been in bed,” he said.  “I’m scared.  My dad thinks I’m going to graduate…he’s looking forward to coming.  I can’t disappoint him.” “In bed…when did this start?” I asked.  Then I heard the story…a trigger event.   A year ago in February, his mother died.  He hadn’t been to any of his classes. I continue to be grateful for the grace given to me at that moment…and knowledge.  Let it be said that he got to a counselor and his father came for his graduation. There should be no shame in admitting depression, no shame in seeking help.  Being knowledgeable about signs and symptoms of  is a gift that you can share; with knowledge you can become an advocate for yourself and others. Mental health literacy is vital…it *can* save a life.

Wanderings in Puerto Rico #EOL

A  breeze keeps him cool in the tropical sun as he plays.  Impishly he smiles at his sister, then makes a rush at her.   He almost catches her, the little lizard wriggling in his grasp.

 ¡ Prisa!  hermana… o me voy a poner un lagarto en la oreja.

¡ Mira! El lagarto va morder el lóbulo de la oreja y colgar al igual que un arete.

¡ Ejecutar!

End of life, Spanish pours from his mouth as he speaks to his wife of almost 50 years.  He has never spoken to her in Spanish in all their married life.

The long-term care insurance doesn’t pay for a great place to keep him but she doesn’t know what else to do.  While feeding two other patients, a nurse’s aide says, “Good thing you feed him…there are too many mouths to feed for me to deal with him too.”

He’s thin, thinner than ever before.  She feeds him bananas…they make him smile.

Me encanta la canción del Coquí.  ¿Lo oyes?

The bed sore is getting worse, his skin is breaking down…he’s stopped walking…he has sepsis.  The list goes on and on…

It’s snowing outside….He’s hanging on…his body just won’t let go of this life.  She loves him but wishes he would leave because of the pain…his pain…her pain at watching him leave her.

The sun feels good on his face.  His island home welcomes him, whispering

Ven conmigo.

*For a dear one…I love you!

The Power of Play, Part 2

Children will put in over 10,000 hours of video gaming before the age of 21.  How do the video game producers keep people playing?  Can health communicators harness the power of gaming by applying game mechanics to our campaigns?

These two questions have been nagging at me and I have found some answers.   Following up on “The Power of Play” blogpost, this post will explore gamification (applying game psychology to non game environments) further.

Why do we keep coming back to games and spending hours acquiring points?

Games are created from the ground up to engage us.  They are make believe.  Game producers create an experience.  The best video games are created around story that is meaningful to the player.  Saving the world, or at least the environment created by the producer, is the overarching goal of many video games.

Mastery is the experience of being competent , of achieving something.  This experience is at the core of what makes any good game fun and engaging.  The producers of video games also create a rule system to master.  There is a clear overarching long term goal and what is called a structured flow of nested goals.  For example, the long term goal is to save the world, a medium term goal is to kill the monster, to do that you need to obtain coins so a short term goal is to collect 5 coins.  Mastery is fun and it is addictive.  We crave learning: overcoming obstacles and then succeeding.  Joy lies in the tension between a risky challenge and the successful resolution of the challenge.

And this leads to a discussion of flow…Does the game have flow?  Flow means that it is neither under-challenging or over-challenging.  If the game is too easy the player becomes bored.  If it is too hard, the player experiences anxiety and frustration.

One of the tricks is to have frequent easy challenges that allow the player to savor their mastery but also have sudden spikes in difficulty.  The goals that are created need to be structured so that at each level it gets a little bit harder to reach the next level—for example, the player needs to earn more points to reach the next level  Another part of the creation of a game is to provide lots and lots of positive feedback when mastery occurs.

When creating a game, knowledge of your users is critical.  Games are tested and prototyped and retested.  Finally, successful game producers help us feel that we are playing rather than working.  Working is something that we are forced to do; playing is something we choose to do voluntarily.

One of the things that keeps us playing is that they aren’t reality.  They are make-believe.

Yet our vigor, our fitness, our physical condition is our reality.  A person’s body and a person’s ability to function in the world are all reality.  Health is reality:  seeking good health or increasing good health or motivating healthy behaviors are all real world endeavors.    And games mimic reality… as we play our games we are always looking for points to increase our hero’s health so that s/he doesn’t die and we don’t lose.

I believe that this is where a game creator who is interested in improving health could plug their behavioral messages.  When the player loses health, opportunities that are real world oriented, could be implemented to gain it back.  The most important part is that this needs to be tightly integrated in the “make-believe,” bringing a player back into reality makes educational or health games preachy

Again, incorporating research into the creation of a game is critical, test and retest to determine what your players want in a game will make it a successful and fun experience. Losing play means you lose your players– the strength of games is the power of play.

Unlocking the Individual’s Ability to Care for Themselves*

“The “biggest value [of connected health]* is in unlocking [the] individual’s ability to care for themselves!”  So says Joseph Kvedar, MD, Founder and Director The Center for Connected Health, a Division of Partners Health  in Boston, Massachusetts.

#HCHLITSS, Health Communication, Health Literacy and Social Sciences twitter chat started 2012 with a bang.  With our guest, Dr. Joseph Kvedar, participants entered into a thought-provoking and engaging conversation.

Dr. Kvedar is an innovator in the use of new technologies to connect health care providers-physicians, nurses, pharmacists and others-with patients.  Using remote health monitoring tools, the Center is involved in helping patients manage their chronic disease and engaging people in their own health and wellness.

To get the chat started and get everyone on the same footing, Dr. Kvedar (@jkvedar) answered the question, What is connected-health?

Connected health is “creating a new model of healthcare delivery by leveraging IT to move care from the doctor’s office into the lives of patients.”  The way to achieve this change in healthcare delivery is [to provide]“objective information about you, presented to you in context, surrounded by the factors that motivate you to improve your health.”

Motivation or engagement comes from the “objective info about you.  [It] holds everyone in the conversation to the same objective standard and aids in reality and accountability.”

Feedback seems to be a powerful motivator.

“Feedback loops offer active reflection, sentinel effect and ability to take action.  [With] info[rmation] about health, indiv[iduals] can ch[an]ge behavior.”

One program the Center is known for involves home monitoring of patients with Coronary Heart Failure (CHF).

“Home monitoring for CHF is a terrific example of integrating patient, nurse and physician to achieve health at home and [at a] low cost. …We’re expanding our CHF program to include acute MI (myocardial infarction) and other cardiac conditions. [We] already do HTN (hypertension or condition of chronic high blood pressure)… CHF – p[atien]ts [are] responsible for daily weight, bp[blood pressure]/hr[heart rate]. [This information] goes automatically over phone line. Nurses view dashboards,[and] do exceptional m[ana]g[emen]t.”

Another innovation developed by the Center involves improving medication adherence.

“The RX [Prescription] vitality glow cap first glows, then chimes. [It] r[e]m[in]ds U to take med[ication]s. Improved adherence by 68% in our trial!

Dr. Kvedar notes in previous presentations that there are certain people who are more likely to want to be involved in connected health.  They are truly engaged in knowing their numbers, for example, how many steps they take in one day or how many calories they use in one hour.  He calls them the “Quantified Self” population.  During the chat, he was asked


“How can connected-health get beyond the Quantified Self population to a more generalized population?” 

He believes that this can happen by “1) understand[ing] patients and their motivations; 2) giv[ing] them simple tools to track and understand the data 3) empower[ing them] to take ownership.”


Who will drive connected-health (or m-health) physicians or patients? Or pharmacists or nurses? 

                “All of the above, but mostly patients,”


Will the volume of baby boomers help “force” a move towards telemedicine if hospitals cannot meet demand?

 “I don’t know if boomers will be the sole catalyst, but something outside the system will be the tipping point.”


Another mover in the connected-health arena may be large businesses.

“Several global fortune 500 firms are getting into CH [connected-health] as we speak.”

One participant noted, “one day, soon, connectivity is gonna prove its[e]lf to be cost-effective and improving outcomes. (or: are we there yet?)”

Dr. Kvedar agrees that we are “very close to proving the value of connectivity… Especially in the context of ACO (Accountable Care Organizations).”

Following up on this comment, Dr. Kvedar was asked if our present health care cost crisis will be solved by innovation occurring outside of traditional healthcare delivery system, Dr. Kvedar replied,

“My hypothesis: the cost crisis cannot be solved from within. each dollar saved is a dollar of someone’s income lost… MDs are the last to come on board, but with new payment models, they are coming on board. 80% ready in our IDN (Integrated Delivery Network).”


Dr. Kvedar’s passion or vision for connected-health (which he admitted was tough to do in 130 characters) is

“Empower consumers to be their own doctor. It can be done.” Then he clarified by saying that “of course there will always be a need for providers. We just overuse them now.”


Although there was some enthusiasm about connected-health, participants voiced real concerns.

Concerns about connected-health that were raised by participants included:

                The digital divide:

                “Health literacy and literacy as part of the digital divide”

                “Low tech communities need most help”

“Those who are rural are the ones who may need this kind of distance support the most”

Cost of technology for the poor: “When I see personalized medicine- I think medicine for those with “resources” only”

Use of hands, eyes for text messaging

“The age ceiling to connected health”

“Risk of increased disparities”

                Where is the desire “for telemedicine in #diabetes?”

Participants also proposed solutions and or disagreed with  these concerns:

“Digital divide can be addressed several ways: provide access in clinics, libraries, community centers, or provide print “

“Use existing communication resources in the community to engage/ distribute info[rmation] this is when the value of partnerships with community health leaders and advocates becomes more vital”

“Projects provided to many people have cell phones-programs such as text4baby.org by the National Healthy Mothers. Healthy Babies Coalition can help”

“Actually at least in much of the #US, even the poor have dumb cell phones, and most have basic texting, least from what I’ve seen”

“In developing countries mobile phone technology developed where there were no landlines everything now moves on new platform.”

 Although this statement was challenged “For many in developing countries-local comm.[unity] leaders (word-of-mouth) [is] still [the] most effective source of med[ical] info

Others suggested more ways to use connected-health:

“Encouraging mentorship in online communities is a very powerful tool to give more power to the patient and their loved ones


Participants also provided useful information on the use of technology for those who have a disability.

The chat provided a forum for information exchange and opportunities for further discussion.  Finally, there was generous sharing of information among the participants. Many thanks to Joseph Kvedar, MD and all the participants in #hchlitss chat.


Wonderful links were provided by participants:

The Center for Connected Health http://t.co/quTwGzdg

Dr. Kvedar’s blog http://t.co/gnni5SC6

UC Davis eHealth Broadband Adoption: http://t.co/62wbn5Fl bridging the divide

California Model E-Health Community Awards http://t.co/Dywo8Q9s

In Canada, the Telemedine Network http://t.co/CauUkO6v has made great inroads connecting /helping esp with mental health

Also need a connected healthcare workforce where needed, when needed & tech to get them there http://t.co/Bjg0dIiX

Recent blog post ?: Can connected work in a fee for service model, or more movement in integrated system?http://t.co/wlGfzSc5

Telcare review from Walt Mossberg. WSJ tech writer with type 2 diabetes. http://t.co/vhQsSSHj

Scottish Centre for Telehealth and Telecare http://t.co/Ncfd0ICv

Project Echo- promoting care for complex diseases in rural and underserved areashttp://t.co/v3OZSDEM

Non traditional entrants into connected-health http://t.co/alxEdh5r

MyVoice is for aphasia and stroke http://t.co/byXDK5W5

Ipad apps for kids with autism @thinkingautism @shannonrosa

*Due to the twitter’s 140 character requirements, comments are shortened by eliminating articles or using shorthand.  [Braces] are used throughout this summary to enhance readability.

*Previously posted at #hchlitss  New youtube videos have been added.

Motivated by Love

Dr. Susan Love’s Breast Book  was our “go-to” book when my mother was diagnosed with breast cancer.  We were able to understand the pathology reports because of it.  I know that we (my family of sisters) were all reassured by knowing there was someone “out there” researching and trying to find out more about breast cancer.  She has done so much to teach about breast cancer.

Now Dr. Love is trying to connect researchers with women.  An Army of Women

That’s right, if you have two X chromosomes you can participate!  She wants 1 million women to participate.  You don’t have to have had breast cancer, or even be related to someone who has had breast cancer, to participate.  All you need to do is sign up and answer a few emails a month.  I’ve signed up and I hope you will consider signing up as well.

Here is a video created by a twitter friend, who is a breast cancer survivor, that explains more about it.

Dance Like No One’s Watching

Do you live each moment unflinchingly?  Do you taste life the way you do the last bite of your favorite food or savor  its essence as you would the fragrance of summer’s final gardenia?

Crisp…the deep blue of an October sky…exhilarating…the ocean spray on a winter day… vibrant…the ecalls of cardinals in April…fresh…the laugh of a toddler

What if you were with a group of people who are all present…all noticing?

What if you were with a group of people who were all searching for three words to express this sense of be-ing and capture it?  Instead of New Year resolutions, finding three words to live by…

That’s what happened January 2, 2012 ….Soul Speech.

When you hear soul-speech, or in the case of a tweetchat, read and interact with people whose hearts are singing, you are lifted up and changed.

Soaring the stratosphere, the group that tweet under the hatchtag #bcsm, reached for Jupiter as each shared the three words that they will use as guideposts for 2012.

Stales: T3: Cancer’s taught me that the vision and goals will always change. Very few things in life can be “planned

Itsthebunk:  I’ve had it 3 X since 1994, so there’s been a LOT of evolving & personal growth. Still hard2 figure out where it fits in my “identity

Ihatebreastcanc: I used to think bc happened to “older” people or “other” people. But not me.

Bcsisterhood: T3: I was the girl who did EVERYTHING right & I still got breast cancer. James’s death again reminded me the best laid plans go south

#bcsm stands for breast cancer and social media…many of the participants have had cancer in one form of another…although most have had or are experiencing treatment for breast cancer. Some participants are or have been caregivers of someone who has cancer.  The participants of #bcsm are welcoming and not picky…they are supportive of each other and anyone else who wants to participate.

Their three words have meaning;

JediPD: “Serenity” covers all: conquers fear[,] builds courage[,] inspires elegance and calm

Lauriek: “Love”, “hope”, “bravery”

BethlGainer: Peace, perseverence, courage

JackieFox12: Mine are create, nurture, appreciate. I love this three-word concept. Resolutions are too much like homework.

BRCAinfo: love community peace

DrAttai: : My words were resilience, rejuvenation, and serenity

MaverickNY: T1: mine are rebuild, refresh, renew

BCsisterhood: Three things you need to survive most anything: God, guts & perseverance.

Brandie185: 3 words … I’m bad at this kind of thing, but I’d go with celebrate, enjoy, heal.

Now, pick one of your 3 words… and expand on that… What does that word mean to you and your vision for 2012?

jodyms: Discernment: making the most of what matters. Don’t sweat the small stuff

itsthebunk:I’ve used 2, 3-word phrases, which works 4 me. It’s all about emerging from the past & being back out in the world, building anew.

JediPD: We all live lives of uncertainty. Have Long term goals and short term plans. Buy green apples. Watch the sunrise. Smile. Live!

BCSisterhood: combo of “courage” & blind faith, & ability to *really* feel that I can have “it all” too. Being the phoenix & soaring

BCsisterhood: RT @jorunkjones@AllThingsCrgvr Yes, I hope to giggle my way through much of this year. Giggle, half full glasses & an open heart

When asked about making resolutions…

Bcsisterhood: @stales T2: We all have the resolution to live life and be healthy, but the truth’s a little scary because it’s out of our hands

Debmthomas: @stales T2 looking at a whole year can be daunting to anyone, ESP cancer survivor, so think for the next 24 hrs I will do …..

Annwax: @lauriek There is no reason why you asking to live well in longer terms, That is the human nature, and everyone wants that

Jackiefox12: T2 I don’t know if resolutions were harder to keep as survivor but I know they didn’t get easier. I’m not a fan of resolutions

Jodyms: T2: Each year makes the resolutions — or the three words – become more meaningful. Done with anything that’s extraneous

Chemobrainfog: T2 goal setting, yes I have goals but I still try to stay in the moment.

Jackiefox12: @BCSisterhood You know what they say, If you want to make God laugh, make a plan. But plans are important.

stales: T2: I set a mini one each night: That I get up the next morning, put two feet on the floor, & go

BCsisterhood: I’ve opened my heart to the possibilities of a new year & I’m looking forward to being surprised, pleasantly, I hope

Allthingscrgvr; T2 One day at a time, one foot in front of the other

How has (or did) cancer change your vision of yourself? Have you developed a new one yet?

Feistypbluegecko: T3 and I know longer take so much for granted, am more proactive

Jodyms: @JediPD I think we are, too:) I love watching what happens here every Monday. Cancer stinks. But talking about it w/friends rocks.

Bcsisterhood: @jackiefox12 Our resiliency knows no bounds. Mankind can, and does, survive the most horrendous things

Feistybluegecko:  Some goals can help us, building our strength for the times that might not be so easy, and giving us heart for when times are good :)

Annwax:  Life is a roller coaster ride, thr r times when u are on the top, and then u are on the bottom, you must stay on the ride of wellness

Feistybluegecko: For me, having these goals has been a reminder to make the most of good times, appreciate the good things

Annwax: Finding contentment in what you have, may help the uncertainty of what might come.

Jodyms: @talkabouthealth @jediPD - this is something @being_sarah and I discussed earlier: take time for tea, and looking for Jupiter.

Stales: FYI, jupiter is just below the moon tonight, go look!

Jackiefox12: T3 I learned I’m more resilient than I thought. And less squeamish :) not sure that’s a vision!

Debmthomas: @jodyms love that, I write out what my “perfect week” would be like, what elements I need to feel good, then work them in

Jedipd: What a wonderful family of friends!

Chemobrainfog: just saw Jupiter wow!

Feistybluegecko: T3;) cancer shook me to the core, confronted me with reality of mortaity, made me take stock so I decided to recalibrate and refocus

Lauriek: T3- So much changed when I got cancer. Still struggling to find the new “vision” – 6 years post diagnosis and 5 years post mets

jackiefox12: My advice if in tx: it’s part of you, not all of you. You have love & laughter, family & friends. Be sad or mad or glad but be you.

Debmthomas: @stales …I was just thinking tonight that any day can be the first day of a new year, each day has great potential

Stales: Let’s make a plan to revisit our Three Words for the first #bcsm chat in July of this year! Okay? Deal!

Stales:  Good night, Moon! RT @chemobrainfog: Good night, Jupiter?

And they have fun!***

Does your soul speak?

Heart Song, Soul Speech, Dancing like no one’s watching…try it.

** My three words Dr Attai

***Shaping 2012 with 3 words

*** I can’t do it justice here.  Please visit the website to read the transcript!

Communicating through photos: Health Advocacy meets Occupy Wall Street

Perhaps it was all started by Frank Warren’s Post Secret project in November 2004.  Whatever its beginnings, using stark note cards to tell a story in video or still photography has become an important and intense vehicle of storytelling on the Internet.

Teens have been using index cards in videos to describe their despair at bullying, their secrets and their understanding of faith.  One teenager, Ben Breedlove, just used this format in December 2011,  to describe three near-death experiences that gave him peace in facing death.  His family posted the video after his fatal heart attack on Christmas Day, 2011.

Occupy Wall Street has also been using this style, in still pictures,  to allow people to self-identify as part of the movement and to tell their stories.  Hundreds of people have added their stories.

One example of this compelling format is Stephanie Sauter’s Facebook post.   It is also an example of a message found in many other Occupy Wall Street narratives.

After conducting a random and cursory review of  200 October postings on  the Tumbler website,  160 of those postings chronicle the negative impact that health (and the health care system in the US) has on personal financial status.  These essays trend around similar themes.

Many of the 160 posts described major medical crises.  Health insurance was unavailable for  the following reasons:

1) Employers had discontinued providing health insurance, or employers didn’t provide it to begin with.

2) The individual who posted was self-employed and couldn’t  afford health insurance.

3) The individual had no health insurance due to unemployment.

4) The individual was working at “part-time” jobs which generally have no benefits.

5) Health insurance premiums kept rising and pay didn’t keep pace with the rise in premiums.

As in the case of Ms. Sautter, others experienced a worsening of their medical condition because of a delay in care, thus increasing the cost of their care in both money and health.

Care of eyes and teeth were of neglected out of necessity.

Denial of coverage due to pre-existing conditions and extremely high premiums due to rare or genetic conditions were noted.

Care for mental health, medications and therapy, were not covered by health insurance and required out of pocket expenditures.

Several veterans expressed the effect of war on their health and decried the lack of affordable mental health services.

Caring for elderly family members, to keep them out of nursing homes, has caused heavy financial burdens.

Even those with health insurance describe being overwhelmed by medical bills.  Many are using up life savings to pay for medical care or medications.

These postings create a clear and compelling picture of the enormous burden that is being placed on the citizens of the US.

Read the posts.  Then decide for yourself.  Why shouldn’t healthcare be a right for all Americans?

‘Twas the Night Before Christmas in the Lawyer’s Offices

A variety of foot apparel, e.g. stocking, socks, etc., had been affixed by and around the chimney in said House in the hope and/or belief that St. Nick a/k/a/ St. Nicholas a/k/a/ Santa Claus (hereinafter “Claus”) would arrive at sometime thereafter.

The minor residents, i.e. the children, of the aforementioned House, were located in their individual beds and were engaged in nocturnal hallucinations, i.e. dreams, wherein vision of confectionery treats, including, but not limited to, candies, nuts and/or sugar plums, did dance, cavort and otherwise appear in said dreams.

Whereupon the party of the first part (sometimes hereinafter referred to as “I”), being the joint-owner in fee simple of the House with the parts of the second part (hereinafter “Mamma”), and said Mamma had retired for a sustained period of sleep. (At such time, the parties were clad in various forms of headgear, e.g. kerchief and cap.)

Suddenly, and without prior notice or warning, there did occur upon the unimproved real property adjacent and appurtent to said House, i.e. the lawn, a certain disruption of unknown nature, cause and/or circumstance. The party of the first part did immediately rush to a window in the House to investigate the cause of such disturbance.

At that time, the party of the first part did observe, with some degree of wonder and/or disbelief, a miniature sleigh (hereinafter the “Vehicle”) being pulled and/or drawn very rapidly through the air by approximately eight (8) reindeer. The driver of the Vehicle appeared to be and in fact was, the previously referenced Claus.

Said Claus was providing specific direction, instruction and guidance to the approximately eight (8) reindeer and specifically identified the animal co-conspirators by name: Dasher, Dancer, Prancer, Vixen, Comet, Cupid, Donder and Blitzen (hereinafter the “Deer”). (Upon information and belief, it is further asserted that an additional co-conspirator named Rudolph may have been involved.)

The party of the first part witnessed Claus, the Vehicle and the Deer intentionally and willfully trespass upon the roofs of several residences located adjacent to and in the vicinity of the House, and noted that the Vehicle was heavily laden with packages, toys and other items of unknown origin or nature. Suddenly, without prior invitation or permission, either express or implied, the Vehicle arrived at the House, and Claus entered said House via the chimney.

Said Claus was clad in a red fur suit, which was partially covered with residue from the chimney, and he carried a large sack containing a portion of the aforementioned packages, toys, and other unknown items. He was smoking what appeared to be tobacco in a small pipe in blatant violation of local ordinances and health regulations.

Claus did not speak, but immediately began to fill the stocking of the minor children, which hung adjacent to the chimney, with toys and other small gifts. (Said items did not, however, constitute “gifts” to said minor pursuant to the applicable provisions of the U.S. Tax Code.) Upon completion of such task, Claus touched the side of his nose and flew, rose and/or ascended up the chimney of the House to the roof where the Vehicle and Deer waited and/or served as “lookouts.” Claus immediately departed for an unknown destination.

However, prior to the departure of the Vehicle, Deer and Claus from said House, the party of the first part did hear Claus state and/or exclaim: “Merry Christmas to all and to all a good night!” Or words to that effect.

– Author Unknown

Hunger and Health Literacy

Do you believe that a child is personally responsible for going hungry over a weekend?  The thinking person would say, of course not.

  •  Did you know that when a child goes hungry over a weekend, they are not able to learn until Wednesday afternoon?
  • Did you know that children facing even moderate nutritional vulnerability are hindered in their cognitive development?
  • Did you know that hunger can:

                           … slow growth…

                           …increase illnesses, like colds and

                               infections…

                           …lower concentration and

                               alertness in school…

                            …inhibit brain development?

OK, these are the results of children going hungry over a weekend.  There are more than 17 million children in the United States at risk of hunger.

Are those children personally responsible for what is happening to them and their brains and bodies?

Children who have had this happen do not recover the lost cognitive capacity, lost health, lost school time.  Reasonable, otherwise generous, people suggest that growing up poor should not be an excuse for poor choices.

In a recent article in Time Magazine, “Child hunger is robbing us of the best of America’s imagination and ingenuity,” said the report’s author, John Cook, Ph.D., of the Boston Medical Center and Boston University School of Medicine, a nationally-recognized expert on child hunger. “Sustainable economic recovery depends on freeing children of the burden of hunger and malnutrition and supporting their optimal growth and development.”

Unfortunately success and failure in the US are too often attributed to the individual.  We become so focused on individual responsibility that we forget other realities.  For example, under-nutrition before the age of three fundamentally changes the neurological architecture of the brain and central nervous system, harming a child’s ability to learn.  If the brains of children are harmed by hunger and if we want to prevent poor health choices and health behavior in adults, then we cannot let anyone grow up in socio-economically disadvantaged situations that include short rations.  That is the only way to fairly expect decision-making that is healthy.

“The impact of child hunger is more far reaching than one might anticipate. Child food insecurity creates billions of dollars in costs to our society. Child hunger affects a child’s health, education and job readiness,” said Cook. “Our best universities are graduating more students from other countries and fewer from the U.S. because we are failing to prepare our children to learn and develop their best skills, creativity and abilities.”

There are things you can do to help!  One mom saw a need in Guilford County, North Carolina and started BackPack Beginnings.  This 100% volunteer organization is trying to reduce childhood food insecurity, one child at a time.  Check out the website, Feeding America and take action!

Patient-Centered Medicine Part 2

The etymology of the word “Patient” is described on  Webster’s site  as:

derived from the Latin word patiens, the present participle of the deponent verb pati, meaning “one who endures” or “one who suffers”. Patient is also the adjective form of patience. Both senses of the word share a common origin.

On Graduation Day, medical students become MDs and repeat this Modern Hippocratic Oath.  Here are a few of the lines about patients.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick….

I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.

It is important to know what physicians think about the Modern Hippocratic Oath. In 2001, Nova did a program on the Hippocratic Oath and invited physicians to add to a doctor’s diary.  I found the following comments fascinating and illuminating and wish to provide them here today.

I have done my best working as an overworked, underpayed academic physician in high-risk obstetrics in a metropolitan city teaching university since then [saying the Hippocratic Oath at graduation from medical school]. I look back to the wisdom and guidance of Hippocrates everyday as I struggle to balance my duties, patient rights and allocation of hospital/societal resources for the sake of underprivileged and acutely ill mothers and their unborn children.

It is particularly evident in this modern era when more students are choosing residencies in radiology, anesthesiology, and pathology for the sake of their lifestyle. Our outstanding residency program in OB/Gyn has difficulty in filling our slots because of significant workload and lifestyle issues. These Hippocratic Oath dissenters tend to openly complain about excessive clinical workload despite obvious patient needs. Many of these individuals rationalize a “shift-mentality” as their future practice of medicine that justifies going home when they are “off-duty” despite any other professional obligations. It appears that “job quality” is a priority when compared to “professional duty” in the medical practice of these particular future physicians.

Some of this new breed of colleagues also have a public display of disrespect for the indigent, confused, and simplistic patient. Instead of becoming an advocate and/or protector of society’s weakest element, they would discard this needy population in preference for the medical procedure, economizing their clinical practice or optimizing their time at home with family and friends.

The most disconcerting attitude within this subset of these “New Age” practitioners is the blatant contempt and disrespect for their elder colleagues in our medical profession. Stated reasons are outdated practitioners and oblivious perspectives to the “modern face” of medicine. While I am still at an intermediate stage in my professional career, I continue to learn more about the practice and ethics of my specific profession from my soon-retiring colleagues than from any journal, Web site, or national meeting.

Generation X has recently matriculated into the field of clinical medicine, and our national healthcare system will only suffer further when we tolerate physicians who do not care, apply inappropriate medical techniques, and have little professional respect for the patient-physician relationship as outlined in this product of early medical philosophy.

P.S. I continue to identify a small group of non-generation-X students and residents each year who defy this societal transformation and who strive to follow in the footsteps of myself and my elders. My solution for this “Gen X syndrome in medicine” is a realistic Third World medical experience for junior trainees (which I have done on several occasions) to give them a perspective that healthcare is a right for all human beings, not a scheduled or convenient privilege!!! —R.E.B.

R.E.B.’s comments describe a fundamental difference in newer physicians which I have described in my tribute previously.  The Occupy Health Care movement needs to address the issue described by R.E.B. “Some of this new breed of colleagues also have a public display of disrespect for the indigent, confused, and simplistic patient.” This attitude can be found in other types of health care providers, as well.  Dismissing social factors that affect health is part of this phenomenon.

 “In itself the definition of patient doesn’t imply suffering or passivity but the role it describes is often associated with the definitions of the adjective form: “enduring trying circumstances with even temper”. Webster’s Dictionary.

Patients should not be patient with this.

It is important that physicians remember the Hippocratic Oath they took and understand this:

What is the essence of a Hippocratic Oath? Simple and echoed throughout time, whatever the words: “May I care for others as I would have them care for me.”
Daniel G. Deschler, M.D., FACS

As leaders of health care teams physicians need to set an example to all people in the health care setting.  If there is to be change, there needs  to be political activism on the part of physicians.  Health care should be available to all.  Physicians need to be paid, but also duly rewarded for honoring  the Oath they take on the day they become physicians.

 

Patient-Centered Medicine Part 2

WE ARE ALL PATIENTS!

The etymology of the word “Patient” is described on  Webster’s site  as:

derived from the Latin word patiens, the present participle of the deponent verb pati, meaning “one who endures” or “one who suffers”. Patient is also the adjective form of patience. Both senses of the word share a common origin.

On Graduation Day, medical students become MDs and repeat this Modern Hippocratic Oath.  Here are a few of the lines about patients.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick….

I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.

It is important to know what physicians think about the Modern Hippocratic Oath. In 2001, Nova did a program on the Hippocratic Oath and invited physicians to add to a doctor’s diary.  I found the following comments fascinating and illuminating and wish to provide them here today.

I have done my best working as an overworked, underpayed academic physician in high-risk obstetrics in a metropolitan city teaching university since then [saying the Hippocratic Oath at graduation from medical school]. I look back to the wisdom and guidance of Hippocrates everyday as I struggle to balance my duties, patient rights and allocation of hospital/societal resources for the sake of underprivileged and acutely ill mothers and their unborn children.

It is particularly evident in this modern era when more students are choosing residencies in radiology, anesthesiology, and pathology for the sake of their lifestyle. Our outstanding residency program in OB/Gyn has difficulty in filling our slots because of significant workload and lifestyle issues. These Hippocratic Oath dissenters tend to openly complain about excessive clinical workload despite obvious patient needs. Many of these individuals rationalize a “shift-mentality” as their future practice of medicine that justifies going home when they are “off-duty” despite any other professional obligations. It appears that “job quality” is a priority when compared to “professional duty” in the medical practice of these particular future physicians.

Some of this new breed of colleagues also have a public display of disrespect for the indigent, confused, and simplistic patient. Instead of becoming an advocate and/or protector of society’s weakest element, they would discard this needy population in preference for the medical procedure, economizing their clinical practice or optimizing their time at home with family and friends.

The most disconcerting attitude within this subset of these “New Age” practitioners is the blatant contempt and disrespect for their elder colleagues in our medical profession. Stated reasons are outdated practitioners and oblivious perspectives to the “modern face” of medicine. While I am still at an intermediate stage in my professional career, I continue to learn more about the practice and ethics of my specific profession from my soon-retiring colleagues than from any journal, Web site, or national meeting.

Generation X has recently matriculated into the field of clinical medicine, and our national healthcare system will only suffer further when we tolerate physicians who do not care, apply inappropriate medical techniques, and have little professional respect for the patient-physician relationship as outlined in this product of early medical philosophy.

P.S. I continue to identify a small group of non-generation-X students and residents each year who defy this societal transformation and who strive to follow in the footsteps of myself and my elders. My solution for this “Gen X syndrome in medicine” is a realistic Third World medical experience for junior trainees (which I have done on several occasions) to give them a perspective that healthcare is a right for all human beings, not a scheduled or convenient privilege!!! —R.E.B.

R.E.B.’s comments describe a fundamental difference in newer physicians which I have described in my tribute previously.  The Occupy Health Care movement needs to address the issue described by R.E.B. “Some of this new breed of colleagues also have a public display of disrespect for the indigent, confused, and simplistic patient.” This attitude can be found in other types of health care providers, as well.  Dismissing social factors that affect health is part of this phenomenon.

 “In itself the definition of patient doesn’t imply suffering or passivity but the role it describes is often associated with the definitions of the adjective form: “enduring trying circumstances with even temper”. Webster’s Dictionary.

Patients should not be patient with this.

It is important that physicians remember the Hippocratic Oath they took and understand this:

What is the essence of a Hippocratic Oath? Simple and echoed throughout time, whatever the words: “May I care for others as I would have them care for me.”
Daniel G. Deschler, M.D., FACS

As leaders of health care teams physicians need to set an example to all people in the health care setting.  If there is to be change, there needs  to be political activism on the part of physicians.  Health care should be available to all.  Physicians need to be paid, but also duly rewarded for honoring  the Oath they take on the day they become physicians.

 

Women, Care-giving and Health Literacy

Health literacy is essential to care-giving in the 21st century. The term health literacy is confusing because we can be highly educated yet still have poor health literacy.  So what is health literacy?  It’s about understanding complex terminology.  It’s about conversational competence like the ability to listen effectively, articulate health concerns and explain symptoms accurately.  It’s also about evaluating, analyzing and deciding about one’s own care. It’s not just reading.

Health literacy is important for us as healthy women, but is it also critical for our family. As women, we are the caregivers in the family. According to a 2001 study, 80% of moms were responsible for choosing their children’s doctor, taking them to appointments and pursuing follow-up care. Moms were also responsible for making health insurance decisions and for caring of the extended family.

What happens when women are not health literate? We are less likely to receive preventative care, such as a mammogram or PAP smear. If we don’t seek important screening tests, we find diseases like breast or cervical cancer at later stages.  Indeed, women with low health literacy are more likely to have chronic conditions like high blood pressure, diabetes and asthma and have difficulty managing these conditions.

Women with limited health literacy often lack knowledge or have misinformation about their body. Without this knowledge, we may not understand how and why diet and physical activity are important in reducing the risk of certain illnesses and conditions. As the ones who take on much of the dietary responsibility of families, we need to know what is good for all of us and why.

If women are not health literate, we may also miss important information during critical health decision-making. In situations that are highly emotional, such as a diagnosis of cancer, it is difficult to recall and understand what has been said. Even under optimal circumstances, patients in these situations leave the physician’s office with only about 50% of the information that has been provided to them.

If one is not health literate, the situation may be more dire. In one study, 80% of breast cancer patients with low health literacy made final decisions about their therapy after only one visit with an oncologist. When researchers compared these patients’ expectations about their  chance of a cure to that of their oncologists, 60% of the women had overestimated their chance of a cure by 20% or more.  While overestimating one’s chance for a cure might not be a bad thing, not getting a second opinion could be disastrous.

A common complaint is that physicians do not explain illness and treatment options in easily understood terms. There is often a mismatch between a patient’s and physician’s expectations and understanding.  Again, studies detail patients’ misunderstanding of common medical terms. When patients were tested for their understanding of words found in transcripts of physician-patient interviews a large variation in understanding occurred. While 98 percent of patients understood the health term vomit, only about one-third understood the word orally, 18% understood malignant and just 13 % the word terminal.  In this same study, the physicians thought they were actually switching to everyday language when communicating with patients.

Unfortunately those with low health literacy are less likely to ask questions of their physician. This is tragic. The people who need more help actually receive less. What can you do to become more health literate? Read and learn about  your health condition. Talk to other women with similar conditions. Talk to your doctor, nurse and other healthcare professionals. While at the doctor’s office, you can try the simple technique called:

Ask Me 3.  The program encourages patients to understand the answers to three questions:

“1. What is my main problem?
2. What do I need to do?
3. Why is it important for me to do this?”

Taking these three questions with you during a doctor’s appointment, writing down the answers and making sure you understand everything that is said to you are ways to make a difference. If you think that the appointment will bring bad news, take a friend or family member with you. Don’t leave the physician’s office confused. You have the right to know what is happening to your body.

A National Emergency: Horrible Death for Older Man With Autism

Update: There has been a horrible event in California: This is a matter of LIFE AND DEATH. Isn’t everyone supposed to be cared for? Basic Police Work Ignored

The US Centers for Disease Control says that the prevalence of children with Autism Spectrum Disorder is one in every 110 children.  The CDC’s 2007 report describes children born between 1992 and 1994.  Those children are now aged 17 to 19, in other words they are about to “age out” of the school setting.  Extrapolation of the numbers means that approximately 1,495,264 will soon be adults with autism in the United States.  There are thousands more uncounted adults with autism.

As many as 40% of those with autism are completely nonverbal. In 1975 Congress passed the Education for All Handicapped Act.  Now called the Individuals with Disabilities Education Act (IDEA) it expressly directs public schools throughout the US to provide free and appropriate education to children with disabilities.  This educational promise includes occupational, speech and language and other therapies.

Families of children with autism have come to rely heavily on the services that are provided by public schools.  Unfortunately the daily hands-on special education services provided free by university trained public school teachers end upon the student’s graduation.

Absolutely no services are mandated by the Federal Government for those children with autism (now considered adults at age 21) after they leave public school.

The families of adults with autism are faced with finding help where there is little help to be found.

Until the early 1990s, autism was said to be a rare disorder, approximately four per every ten thousand births.   Scientists believe that it is caused by a combination of environment and genetics.

Whatever the cause, there is awareness of autism among the general population but not realism about autism.The reality is that there are children and adults with autism that are severely disabled.  Some of these individuals require round-the-clock, 24/7, eyes-on vigilance.  Unfortunately, some families cannot cope with this kind of care at home. Sometimes these children have no family.

Prior to the 1980s, the only choice for families with children with severe autism was placing their loved one in a state institution.  There were almost no community services available except a few private schools or day programs for individuals with mental retardation. The staff at these private programs and at state institutions were not trained or experienced in working with people with an autism diagnosis. Often those presenting with a diagnosis of autism were refused admission.

Although there is much that was good in the de-institutionalization movement of the 1980s, there was an unfortunate side-effect.  Communities were supposed to fill the gap left by the institutions.  That hasn’t happened.  It costs over $75,000 per year for round the clock care for one adult with autism and expenses can go as high as $200,000 per year per person.  Who can afford this?  No insurance company covers the annual expenses of long-term care.   Most families have to rely on Medicaid to cover this expense.  Unfortunately in most states, the Medicaid that covers physician visits and medication is not the same Medicaid that pays for residential care.

The Medicaid program that pays for residential placement is a limited program called the Home and Community-Based (HCB) Residential Waiver.   Having Medicaid doesn’t automatically mean you have the waiver.  Unlike the mandatory services under I.D.E.A, the Waiver is funded for only a limited number of eligible individuals, so eligibility does not provide entitlement. What is available for people with autism who need residential services?  Not a lot…More in a future post.

The Power of Play

Why do gamers spend hours amassing points for rewards that don’t really exist?  

Because games are fun.    What does this have to do with health communications?  Health communicators are trying to use game mechanics to hook people into doing things that will improve their health.  That’s right:   instead of being preachy, there is an effort afoot to make losing weight or increasing physical activity enjoyable.  By coupling a system of incentives with any number of efforts to improve health , health communicators hope to make doing a new healthy behavior fun and “addictive.”  Getting people to begin a new health behavior is difficult…that’s where the fun comes in.  Making it ‘addictive’ is critical because one of the major problems for any behavior change initiative is maintenance:, that is,  how can we find a way to keep people from backsliding, losing their momentum and quitting the behavior? Gamification is the new buzz word.  Why is gamification so fashionable?  It makes sense.  Let’s look at human beings.  According to economists, we are loss averse, favor immediate gratification and are overly optimistic about the future.  What this means is that the risk-oriented messages that are part of traditional health interventions really don’t convey.  Investing in your future good health or relating present behaviors to the future just doesn’t have as much impact as the immediate rewards of the behavior.  For example, even though you know smoking that cigarette can cause cancer in the future, you still smoke it because it tastes great with your first cup of coffee. According to health game aficionados, since people are more interested in reward in the present than what will happen in the distant future, communicators need to think out of the box.  This is where the structure and reward system of games comes in. With games you can invent immediate gratifications for behavior change, you can offset the configuration of time of action and payback around desirable health behaviors.   Here are some ideas to keep in mind when making a behavioral intervention, at ,for example, a workplace, into a game. The first is KISS…keep it simple means choosing one task or behavior and focusing on that.  Second, it is important to find out the key motivators for the audience. What can you do to integrate their motivators into the game? Relatedness, or an individual’s need to feel connected socially or to a group is a powerful tool that is used.  This is also related to a person feeling valued by things outside his or her self.
Third, incorporate the opportunity to work together if there is a desire.  The group size is important, apparently 8 is the magic number to get things to happen.Fourth, allow people to advance through levels and acquire points as individuals and as teams.  Fifth, use social and monetary equivalent rewards. Be sure to reward based on information on motivations.Sixth, be creative and use narrative themes to keep interest. Finally, provide rewards/incentives at regular intervals but then add to the game some surprise rewards.  Surprises work and keep people interested.

An innovative use of game mechanics is the Biggest Loser Minnesota Challenge.  The Alliance for a Healthier Minnesota partnered with RedBrick a company located in Minnesota to create the game. More than 22,000 Minnesotans participated in this statewide health program.  Altogether they lost 75,000 pounds. Now that’s a powerplay!

What happened to "old school" medicine?

Times they are a-changing.  My dad wouldn’t have liked what’s happening. C. A. Hoffman, Jr.  was an old-school physician.  Often, to the chagrin of his office staff, he spent real time with his patients.  Five o’clock would come and go. His office was busy and filled with his laughter and booming voice.  A ringing office phone made him happy.  There was a blackboard in his office.  It had to be white with chalk, covered with his “To Do” list.

When I visited the office, I would sit on a strange-looking metal safe and watch him as he went from room to room.   That safe was so heavy that no one could move it.  It just sat for years in the middle of the busy office front, taking up space and getting in the way. Dad had an answering service to take calls after hours.  The service would call our house in the middle of the night and on holidays. No matter when, he would return his patient’s calls and order prescriptions for them.  If it was an emergency he would direct them to the Emergency Room of the hospital.  Then he would get up and meet them there.
He worried about his patients.  If he lost a patient, I would know about it because he would be incredibly sad.When he died, there was a line of people that wound around the funeral home, waiting to speak to my family.  I don’t know how many hands I shook that night or how many times I heard, “your father saved my child” or “if it hadn’t been for your father, I wouldn’t be here today.” After he died, my family opened up that safe.  There were thousands of invoices that he had just slipped into the safe and forgotten.  Many, many of his patients received his care for free. My father is not the only physician I have known to do this.  My pediatrician was another.  He did not die a rich man, but he was dearly loved. Now when I go to the doctor’s office, I’m expected to pay at least the copay, before receiving care.  If I couldn’t pay, would I get to speak to the MD?  No; I would have to explain my financial situation to someone at the front desk in front of the other patients.  Probably, I wouldn’t get to see the physician. When I call the doctor’s office after hours, an answering service takes the call.  My call is directed to a nurse on call who is looking at my records on line.  S/he doesn’t know me.  If it is an emergency, I’m sent to the Urgent Care Center.  I don’t see my physician.My father opposed universal health insurance, calling it “socialized medicine.”  But I wonder what he would say if he saw medicine as it is practiced today.Many say the change in medicine is due to the terrible financial burden most medical students incur to become physicians.  I’m afraid I don’t see it that way.  I believe that medicine has become a business and generosity has no substantial place in the business paradigm. Nowadays, I believe we need universal health coverage because there are so few “old school” physicians left.  They are a dying breed.

Low health literacy may lead to poorer health

I started a group on LinkedIn called Health Communication, Social Marketing and Social Scientists.  Recently there has been a long discussion over health literacy.
When discussion among health communicators over health literacy becomes a debate over individual responsibility versus social responsibility, you know there is a problem. Maybe it’s just that the United States hasn’t and won’t ever get beyond its Puritan roots. Or maybe there is a true misunderstanding of the terminology and the research. So let’s start with definitions.

Healthy People 2010 defines Health Literacy as: “The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.”

The term health literacy can be confusing because it is not just about reading.  In fact, it is about an extremely complicated skill set.  Conversational competence, that is,   the ability to listen effectively, articulate health concerns and explain symptoms accurately is part of health literacy.  Health literacy encompasses decision making and analytical abilities.  Tasks that are required of people using the healthcare system include evaluation, analysis and interpretation.  Locating information and being able to assess its quality is essential.  Being able to do mathematical calculations and to judge risk are also part of health literacy.

Therefore, people who are highly educated and functioning well in our society, people who are “reading literate” may be “health illiterate.”  What this means for our society has been illustrated in study after study.  A recent review of the literature confirms that those with poor health literacy are more likely to have poor health outcomes.  Poor health literacy is an economic drain on our society with studies focusing on chronic conditions such as asthma, diabetes, heart disease and cancer (Report on the Council of Scientific Affairs, Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association, JAMA, Feb 10, 1999; Merriman, Betty, CA: A Cancer Journal for Physicians, May/June 2002; Schillinger, Dean, JAMA, July 24/31, 2002; Norton, A. Reuters Health, July 19, 2011).

Colleagues decrying individuals who choose to leave high school without graduating as the source of the health literacy problem in the United States are missing the point.  Colleagues who state that because there is so much free information “out there” it is the individual’s responsibility to understand it and use it effectively,  also do not understand what health literacy is.