Meredith Hurston, #HCHLITSS Guest September 17, 2015

We are very excited to have as our guest on #HCHLITSS Thursday September 17, 2015 Meredith Hurston. Here is a short bio.

#hchlitssMeredith Hurston is a native of Flint, MI and finished her undergraduate studies at The University of Michigan-Flint. After completing a graduate degree in healthcare administration, she now works at the nation’s top rated hospital in Baltimore, Maryland. She is a board certified Clinical Laboratory Scientist currently focusing her efforts on healthcare quality and patient safety. Her reputation as a passionate, no-nonsense advocate for patients and their safety has created a buzz in the medical community. Driven by faith and dedication to closing the gap in healthcare disparities, Meredith serves as an ePatient Advisor to the Stanford Medicine X program. Meredith believes in strengthening the health literacy of patients, families and consumers to improve their confidence when speaking to medical professionals. This key element will allow more patients to take an active role in decision-making for their health. She has committed the use of her voice to make that happen. She is the host of Take Charge of Your Own Health podcast and curates The Empowered Mocha Patient, an online health resource especially for African-Americans.

She will be facilitating a workshop at the Stanford Medicine X |Ed conference, which precedes MedX. Her workshop is designed for healthcare students and educators and will teach strategies for patient engagement.

Please join us and learn more. Use http://www.tchat.io/rooms/hchlitss!

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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!

 

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.

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.

Reach For Your Best!

As a 4th grader in Jackson Mississippi, Ivor stood outside a hospital room and listened to her father scream, “Let me go…let me go…” as three men held him down for a spinal tap.  In that moment, she made her decision to become a physician, “I didn’t want to feel that disempowered again,” she states.  Her decision to work as a health communication researcher evolved from this experience as well, “I didn’t want other kids, I didn’t want any patients … I didn’t want any other families to feel that way either.”

Dr. Ivor Horn’s journey from Jackson to Washington, DC and to an Associate Professorship in Pediatrics at Children’s National Medical Center and George Washington University School speaker-ivor-horn-lgof Medicine included hardship and courage.  Only in medical school did she discover that her family had been homeless at one time, “the fact that no one told me I was poor or homeless …gave me the freedom to not put boundaries on what I could do,” she writes.

This is why Dr. Horn maintains a clinic in one of the poorest areas of Washington, DC:  Ward 8.  Some facts highlight the need in this area of DC: the obesity rate in Ward 8 is 42%, even higher than Jackson Mississippi and the average family income is $10,000 per year.   “The families I see experience challenging home lives a lot like that which I experienced growing up; I can look a kid in the eye and say with conviction that I know exactly what he is going through….” At her community health center, no one is turned away because they can’t pay.

As a physician, Dr. Horn is tested by her clinic’s schedule, “Our schedule allows 10-15 minutes per patient with a little extra time for complex patients…. those with multiple medical conditions that need multiple services.”  So she empowers her patients with her four rules:  “1) Sit down. 2) Listen, 3) Let them know we are in this together.”  And her final, the “doorknob rule- “You can stop me anytime during the visit, even if my hand is on the doorknob.”

Pediatricians need strong partnerships with parents.  What she has learned in her practice and her health communication research is that, “patients are more likely to follow a health plan they helped develop than one dictated to them.”  Her experience tells her that, “Managing a chronic condition like asthma is about what you do every day, not just during a crisis. Give patients and caregivers tools that make management part of their routine. That means asking about THEIR routine,” she says.

Now she is sharing this knowledge with health care innovation designers in what she calls ‘Inclusion by design.’  She defines ‘inclusion by design’ as “A conscious effort to include the minorities who need disruption of health care, IN the innovation, development, and design process.”

To Dr. Horn, it’s really a no-brainer. As she points out,   “Minority communities are actually early adopters of technology. They own more cell phones and are greater users of social media.”

Yet she is frustrated that, even though there is a wide variety of health IT out there, much of it is not reaching minorities or the underserved.  In a presentation at the Healthcare Experience Design, 2013 conference, Dr. Horn gave a step-by-step description of just how to reach more of the underserved with innovations.  For example, she pointed out that personal connections are key and active listening is necessary.  Developers need to communicate and collaborate with minority communities on innovation solutions.  “Trust and listening matter in health…and they matter in the design process,” she says. “Companies need to look to minority developers and Health Care Providers who are in the community already,” Dr. Horn states.

Dr. Horn recommends that designers start small or locally and then scale up.  When HIT designers bring up the barrier of cost or money, she makes the important point that bringing innovations that help those who need it most will, in the long run, reduce health care costs for everyone.

Dr. Horn practices what she preaches,  “When my patients see me in their neighborhood, it matters,” she says.  When she recommends apps for teenage patients with asthma “Their eyes light up and they feel empowered.  I’m on their turf.”

Knowing where her patients are coming from makes a huge difference. “I know what it’s like to have your phone or your electricity turned off.” And being a role model is important. “I know how important it is for my patients to see someone who looks like them and who tells them, I’ve been where you are and there is no excuse for you to not reach for the best.”

And that’s just what Ivor Horn has done since that fateful day in Jackson, Mississippi.

Content from:

#HCHLITSS Tweet chat transcript

Presentation at HealthCare Experience Design 201 Conference 

Dr. Ivor Is In:  MyBrownBaby Blog

 

 

 

“There Is No Health Without Mental Health”

@DocGroucho“There is no health without mental health. I’d like crisis care to be linked into your regular healthcare, so your provider can follow-up long-term.”

“Suicide is the 10th leading cause of death. The third for some children. It’s a public health issue.” April Foreman, PhD

Dr. April Foreman is not your average psychologist. She is an innovator and an extremely determined woman, especially when it comes to Veterans and social media. “I love serving Veterans in my role as Suicide Prevention Coordinator at my VA. Love innovating ways to give good care.”

That’s why she and her VA team went the extra mile to get her to a WiFi enabled Starbucks for a twitter chat. “I had to drive back from New Orleans and my government car wouldn’t start. My VA team knew about this chat and …helped me call the tow and get a new car in record time, so I could get to a place with WiFi! Many of the people I work with are Veterans…And they know how to work as a team!”

Foreman describes her job search which led to her employment this way, “At the VA, everyone I spoke with understood the value of connecting providers, patients and their health care system using personal technology and “’new media.’  In mental health care we understand it is the relationship that heals, and I knew that I needed to work in a place that understood the importance of life-long patient relationships. A place that would do anything, even brave the Web 2.0 frontier in health care, to do this.”

In the same post, Dr. Foreman states that she knew she wanted to be a psychologist since fourth grade. “Easing pain – even just a little bit – one person at a time has always been my personal mission,” she says.

Dr. Foreman uses social media to educate and inform. This is because social media is “where Veterans are,” she says. “Veterans operate by word of mouth. Social media is a natural extension of that.”

Dr. Foreman appeals to Veterans this way, “How do we build strong connections with you? Connections that might save your life or save the life of a Warrior you care about? There is me, there is you and woven around us there is this “system.” How do we build a bridge over it all and connect?”

She believes that technology is the answer. “We can use IT to reach out to people who feel suicidal. We no longer have to wait for them to call US.”

In fact, she points out that there are efforts occurring at this moment in social media. “Right now, Facebook users can tag concerning posts and get those posts reviewed by a national suicide prevention crisis center. We can also use smart phones to track mood, send data to Health Care Providers…maybe even predict changes in suicide risk.”

One of the difficulties Dr. Foreman faces in her efforts to use social media in psychology is provider attitudes.  The “biggest challenges [to using social media in psychology] are attitudinal. FEAR, very irrational, mostly by providers and system administrators.”

Concerns about privacy is also a common response from providers. But according to Dr. Foreman, “Well, the knee jerk reaction [is] that all tech is a “HIPAA” violation, or unethical…but they can never say why. Fear about confidentiality, and fear about crisis/suicide risk.  Fear about ‘boundaries’ and provider privacy. I also think many mental health providers tend towards being face-to-face and low tech. They feel uncomfortable with tech. Avoid it.”

Yet the benefits are great according to Dr. Foreman because she believes that psychologist could be “using technology to target risk-related content and bring crisis resources TO people in need.” Dr. Foreman also believes other providers need to become involved in social media and health 2.0. ““Primary Care Providers provide 80% of mental health care. Usually the last provider to see someone before suicide.”

“Humanistic providers have an obligation to use their social media presence in appropriate ways for patients.” There are reasons for Dr. Foreman’s vehemence. One moment of irrational sadness and a life is lost. It’s “very heartbreaking….Many people who die by suicide were not thinking rationally. A short, irrational, impulsive period.  It is preventable. It’s why I do what I do.”

For those providers who are concerned about using social media, Dr. Foreman suggests putting together a social media policy and sticking by it. Dr. Foreman created a social media policy which include personal rules for friending and contact requests from current and former clients. These policies help to respect privacy of both client and therapist. She has published them on her website.

There are other benefits.  “I also use socialmedia to network with a wider network of professionals. Bring knowlege to my patients. I’ve often helped patients use social media to connect to resources support during a therapy session.”

Another barrier to widespread use of social media technology in mental health is that  “More providers need education about [social media].  And to be paid when we use it as legitimate intervention….Health Care System administrators need education on the way I can scale care by having patients use technology to monitor and share symptoms.”

“I’d like communications technology to allow me to send a suicide risk assessment to someone in crisis and have that data go right into a medical record, to be seen and tracked by all providers. Primary Care Providers, too.  I’d like crisis care to be linked into your regular healthcare, so your provider can follow-up long-term,” Dr. Foreman proposes.

Clients that Dr. Foreman work with are Veterans of the Iraq and Afghanistan wars. “Many Iraq/Afghanistan Vets feel isolated from other peers their age.  They have done and seen things they can’t discuss very often, [it’s] hard to feel a part of civilian life.   Many Iraq/Afghanistan Vets served in the National Guard.   [They’re] not part of continuous military community. Not really civillian though.  Many of our newest Vets are having difficulty translating military experience into civillian jobs.  [It’s] very stressful.”

The Veterans Administration has put some important measures into place to serve these Vets.  “The VA has preventive and supportive measures in place for the newest combat veterans, especially their feelings of isolation. The VA has special case managers that track Vets from these wars, keep them connected with services.  VA and VetCenters also try to have support groups focused on our newest Vets.”

april-foremanWEBSocial media is valuable to Veterans. “I find that they like knowing they can get support after they leave our session. Portable support amazing….Many kinds of support are a Twitter hashtag, Face Book page, google search away….” she relates.

Suicidal ideas can be associated with homicidal ideas. “Many times, when I see someone in crisis, they have conflict in their relationships, and want to hurt both self, and others,” Dr. Foreman states. Yet she clarifies that having ideas does not mean someone is making a plan. “Ideation can be normal….We are mostly born with an aversion to killing ourselves and others. Have to erode this to harm self or others.” It is only through watching or experiencing violence that people “acquire capability” to harm themselves or others.

One of the tools that Dr. Foreman has used in her practice is an app which allows clients to record their feelings on a daily basis. One reason why self-tracking, using apps, is helpful is because “pain/mood make it hard to accurately think back and self-report. Daily tracking is much better.” When the client self-tracks, the information can be used by the provider for prevention.  “We can prevent suicide by lowering [the] lethal risk during [the] period of intense emotional pain when you can’t think straight… clear thinking [is] often derailed in crisis,” she states.

When someone starts talking about suicide, what should you do?  Dr. Foreman says, “ I take that talk seriously, and am VERY glad to talk about it. To know and to help.  Listen to the talk. Address immediate safety first. Get help and a consultation.”  She also provided the link to the Nation Suicide Prevention Lifeline .  She said, “Veterans who use our Veterans Crisis Line will get a follow-up call from a VA provider like me within 1 business day. ”

One of Dr. Foreman’s desires is something that anyone reading this blog can do.  Share the links to the National Suicide Prevention Life Line and the Veterans Crisis Line and keep the public discussion of suicide going.  “Reach out!” she advocates.

Based on #HCHLITSS The Health Communication, Health Literacy and Social Sciences twitterchat.

Physicians Need Social Media

When patients hear the term “The Empowered Doctor” they may ask “I thought physicians were empowered. Staff, systems ,procedures are controlled by them. What am I missing ?”**

31deeb1 “Doctors in their prime are going out of business,” says Dr. Simon Sikorski, President of Empowered Doctor Inc.   Dr. Sikorski believes that physicians need to realize they are are in business and that they need to monitor their patients’ satisfaction. “Patient satisfaction or “client satisfaction” is critical to success,” he believes.

Dr. Sikorski describes an empowered doctor as someone who is a “trusted filter of information.”  There are a number of places where patients are finding information, “Right now docs are competing for patient education with pharma, bloggers, health information companies, ratings sites etc.”   He advocates that doctors become active participants in social media and even prescribe apps.

Physician involvement in social media must be augmented.  Doctors need to spend time and money “investing in how they’re found. It’s no longer sufficient for doctors to have a website. So the doctors who don’t even have one, or a simple blog optimized for their name, are at a tremendous disadvantage,” he believes.

One of the main reasons for Dr. Sikorski worries about physician involvement in social media is because of questionable methods that are being used to collect and publish patient reviews.

“Patient reviews are a trap. To date patient ratings sites are largely in the business of blackmailing doctors, and not creating an actual service,” Sikorski argues.  In fact, he describes a practice of calling on physicians to  “purchase advertisements or remove bad reviews.”   The two sites that Dr. Sikorski believes are providing fair and accurate ratings are Google Plus and Facebook, one reason being that the reviewers are not anonymous.

Dr. Sikorski describes the patient’s process of finding a physician this way, “Take a patient who is looking for an orthopedic hand surgeon. He/she will look up on Google ‘orthopedic hand surgeon’ in their location, select several doctors, go to their websites … then go back on Google and try to find something negative about those doctors….unless 20-30% of patients actually write reviews about doctors (so at least ONE THOUSAND reviews per calendar year) everything on the ratings sites is misinformation.”

Dr. Sikorski asks patients who are using the Internet (e-patients) to be “patient” with their physicians.  Many e-patients complain that physicians will not address the information they have gleaned from the Internet. “Too many times I see patients come to a doctor’s office already frustrated with the message ‘It’s my way or the highway’ … to which the doctors respond ‘It’s my way.’” Sikorski is trying to change this response. “Some of my personal friends ask their patients to share the blogs they read, contribute content to their websites, and some of them even end up hiring bloggers on a part-time basis. Why? Because an Empowered Doctor is so rare to find, and when people talk about them on social media, that practice becomes celebrated on many different levels.”

Sikorski’s advice for physicians, get involved in social media.  Physicians “need to be on social media. They need to invest in patient satisfaction and their business. They need to develop a process where patients’ feedback and needs are just as important as medical knowledge. Doctors who do that can create very successful practices. Doctors who don’t… are retiring.“

Based on March 28, 2013 Health Communication, Health Literacy and Social Sciences Twitter chat #HCHLITSS.

**comment by Annette McKinnon @anetto

A new initiative on the Empowered Doctor is Empowered Patient where bloggers are celebrated for their contributions to healthcare, patient education, correcting of misinformation on the internet, helping people make better choices, and more. To learn more go to http://www.empowereddoctor.com/empoweredpatient/

Another write-up on the chat at http://enbloommedia.com/2013/04/04/helping-physicians-make-their-way-up-the-social-media-learning-curve

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

marie-ennis

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.

Bed Rest versus Family Survival

Language matters.  So when we talk about changing a discussion of “Women’s Health” to “Women and Health,” we aren’t being tedious.  We are being profound.*

“Women and Health” is a phrase that recognizes the roles of women in the health system, from informal providers of care to primary decision makers about health in their families.  It also acknowledges the worldwide increase in numbers of women in medicine and as health professionals.

Unfortunately, many societies are neglecting the needs of women throughout their lives.  For example, every year hundreds of thousands of women die in pregnancy and childbirth.  The inequity of health care is evident by the fact that 99 percent of those deaths are in developing countries.

When women are healthier, children survive and are healthier and that means the continuance of communities.  High infant mortality is a direct function of women’s health prior to conception, during pregnancy and after pregnancy.  Even in developed countries, health disparities increase the problems in pregnancy and increase infant mortality.

Darline Turner-Lee is actively working to help high-risk mothers-to-be in the US.**  She is a physician assistant and certified exercise specialist.  Her expertise along with her personal pregnancy experience has led her to create the blog and company Mamas on Bedrest & Beyond.  “I work to educate women and raise awareness to the issues of Mother/Baby friendly childbearing….I educate women to ask questions, be aware of any new changes in their health….”

Her focus is on women who have been prescribed to bed rest.  For those who are unfamiliar with the bed rest prescription she explains, “The “reason” bed rest is prescribed is to prevent preterm delivery. High blood pressure, pre-eclampsia, cervical insufficiency, preterm labor and multiple gestation are some of the most common reasons, but there are many.”  The bed rest prescription is more common than one would think, “Each year about 750,000 to 1milion women are prescribed bed rest during pregnancy.”

In her work with mothers who have been prescribed bed rest, Turner-Lee sees first hand, the impact of disparities on women and their children.  “When working women are placed on bed rest, they risk losing their jobs, their income and family security,” she describes.  “The disparity occurs between lower income women and women of higher socio-economic status,” she notes. “Lower socio-economic status women often can’t leave their jobs, so don’t “comply” [with the bed rest prescription].  As a consequence, those women, often minority women, end up with poorer outcomes.”

But as Turner-Lee points out it is not an issue of medical compliance. “Women weigh their options-provide for their “living” family or save an unborn baby.  It’s a hell of a choice to have to make,” Turner-Lee realizes.

Although there is legislation that should protect women, the Family Medical Leave Act (FMLA) only guarantees 12 weeks of unpaid leave with job guarantee.  Turner-Lee explains, “A big problem is the lack of paid maternity/sick/family leave in the US.   In lower paying jobs, if you are out, you don’t get paid.  After that, a woman is on her own. Between losing their income, being placed on bed rest (often in hospital), financial problems quickly rise. If mama or baby has complications, the medical expenses often render families bankrupt. It’s a huge issue.”  A prescription of bed rest can, in fact, be “devastating” for lower socio-economic women and their families. For example, with a diagnosis of cervical insufficiency, women may have to go on bed rest with four and a half months left in their pregnancies. In this situation, “complying with a bed rest prescription is “the difference between having a home and being homeless and hungry.  Even women in so called “white collar” jobs, if they are unable to work, they are at risk of losing their jobs, their

Of course, increasing opportunities for good health is the best way to prevent at-risk pregnancies.  In the present environment, preventing the possibility of bed rest is “really good prenatal care, really early in the pregnancy,” says Turner-Lee.  She cites research by Jennie Joseph, CPM, who has gotten positive results in starting prenatal care at six weeks which is two to six weeks prior to when US obstetricians typically first see mothers-to-be.  “In the US, obstetricians typically don’t see mamas until between 8-12 weeks and often a problem may already be brewing,” says Turner-Lee.benefits.”

Turner-Lee points to statistics.  “The US has some of the highest infant mortality rates in the world; highest amongst indus

trialized nations and even amongst some “developing” countries.”  The Office of Minority Health, part of the US Department of Health and Human Services provides some other sobering facts about US infants:

    •  African Americans have 2.3 times the infant mortality rate as non-Hispanic whites. They are three times as likely to die as infants due to complications related to low birth weight as compared to non-Hispanic white infants.
    • African Americans had twice the sudden infant death syndrome mortality rate as non-Hispanic whites, in 2008.
    • African American mothers were 2.3 times more likely than non-Hispanic white mothers to begin prenatal care in the 3rd trimester, or not receive prenatal care at all.
    • The infant mortality rate for African American mothers with over 13 years of education was almost three times that of Non-Hispanic White mothers in 2005.
    • African American infants are 2 to 3 times more likely to die before their first birthday than any other group.
    • Stillbirth is more likely in African-American women than any other ethnicity.***

Preventable conditions like hypertension and diabetes, (conditions that are more prevalent in low income women) are risk factors for problems during pregnancy.  Likewise, infections that impact the fetus are also more common in African American women.

Health disparities based on income and ethnicity impact mothers-to-be, fetuses, mothers, babies, children and all adults.
Women in every society are the main caregivers of children, the elderly, the sick and the disabled. Perhaps focusing on the right to health, which according to the World Health Organization, compels governments to create conditions so that everyone can be as healthy as possible, is the best starting place.  Because assuring that women are as healthy as possible is not just about their individual health, it is about the future health of their children, the health of a nation. Ensuring this human right makes sense for society.  In the US, even bed rest, a way to possibly prevent infant mortality can actually financially destroy the mother, a possible surviving baby and the rest of the family.  Is it possible that there is another way?

* For more information on this exciting change read this discussion by Julio Frenk, Dean of the Harvard School of Public Health

** The quotes from this piece are based on a twitter chat #hchlitss moderated by Kathleen Hoffman and RV Rikard held on October 18, 2012 with D. Turner-Lee.

***Content directly from Mama’s on Bedrest gathered from the Office of Minority Health

“Great Things Are Possible”

Ask a scholar of human rights a seemingly innocuous question and suddenly you are transported into another world.  As Nicholas Cooper observes,  “People in United States are more familiar with civil rights language, than human rights language.”  That’s what you’ll find while exchanging ideas with Cooper.  For example, when asked to define a “rights-based approach to health,” Cooper has a ready answer:

Human rights-based approaches broaden “development” to include agency, empowerment, and duties. Human rights approaches identify duty holders (principally states) and duty bearers (all people).  They seek change by empowering rights holders to seek, advocate, and get their freedoms and entitlements…and empower duty bearers to respect, promote, and fulfill those rights. “

Okay, lost me.  Start out with the basics.  So Cooper backtracks.  “If I have a right to health, others have an obligation to respect, protect, and fulfill that right…If I have a right to freedom of religion, others have a duty (or obligation) not to violate that right.”

That makes sense.  Viewing health from a human rights perspective changes the strategies used in health communication, health education, policy and program design.  Over the past 8 years, Nicholas M. Cooper has been actively involved in making the connection between human rights and health, and translating public health science into rights-based action.

This language barrier and the lack of knowledge of human rights law leads to many missed opportunities.  “We need people who can speak both languages, and who have a willingness to act,” Cooper explains.
Human rights are derived from international and national law, legislation and treaties.  “Health is definitely a human right established by the United Nations Covenant on Economic, Social, and Political Rights Article 12, among others,” Cooper explains.  From this perspective, Cooper has acted as a Consultant for UNICEF in the Middle East, an International Program Development Participant in India and most recently as Child Protection Officer after the earthquake that devastated Haiti in 2010.

According to the World Health Organization, the right to health does not mean that everyone must be healthy, but it does compel governments to create conditions so that everyone can be as healthy as possible.  Cooper clarifies, “The right to health … includes the determinants of health.  Food, water, housing, etc.  As the preamble to the WHO Constitution says, ‘health is not merely the absence of disease.’”

So, if health is a human right, how do we assure that it is respected?  By “empowering people to claim the right, empowering others to respect, protect, and fulfill those rights,” Cooper explains.  “The human rights approach is about capacity building.” In other words, the human rights approach is about teaching everyone, those in and outside of government about their basic rights.  “So, a human rights approach would, say, give people the information, tools, and processes to recognize and act on human rights, “says Cooper.

At Harvard’s Francois-Xavier Bagnoud Center for Health and Human Rights, his work has focused on the protection of children and youth using human rights and sustainable livelihoods approach.  This approach focuses not only on addressing risk and vulnerability, but also on providing developmental supports and opportunities that are protective and promote success and resilience.

 In the United States there has been a long discussion about affordable care.  But from a human rights perspective it is clear. “Affordable care is essential to have a fair society.  The US does have an obligation, especially given its capacity to do it. But, US judges also don’t know how to handle human rights law,” Cooper observes.    At the FXB Center there are courses available to teach judges and  lawyers about human rights law.

According to Cooper, the human rights approach is about giving people the information, tools, and processes to recognize and act on human rights.  “Talk about Human Rights  in education campaigns, talk about them to a hospital administrator, make budgets based on Human Rights.”

“Too often, public health science ends with a journal article, not action.  There needs to be follow up and implementation.  There is so much we know, but so little is implemented,” Cooper insists.  That’s why Cooper acts by conducting water and sanitation education, instructing on malaria and HIV/AIDS transmission, and exploring how new technologies can be used to identify need and deliver assistance in humanitarian and development settings.  And he wants others to act.   “Great things are possible; how do we get there with what we have? Human rights exist (in law). Global health issues exist. You are affected. See and act.”

A diagram on health and human rights can be found at http://www.who.int/hhr/HHR%20linkages.pdf

Based on twitter chat held on October 1, 2012.  Full transcript can be found at #hchlitss The Health Communication, Health Literacy and Social Sciences Tweetchat

More information on Nicholas Cooper can be found on LinkedIn.

For more information on the Francois-Xavier Bagnoud Center for Health and Human Rights click this link.

E-Patient Advocacy for Rheumatoid Arthritis: Annette McKinnon

Annette McKinnon is happy with the care she gets as a Canadian citizen. “Our healthcare system covers everyone. We all pay through taxes but all are in the group.  Doctors visits, physicals, imaging, most lab tests are fully covered. I know that a serious or lengthy illness will not bankrupt me.”

Being a patient in Canada has been important since McKinnon has Rheumatoid Arthritis (RA).  RA is a chronic, degenerative, autoimmune disease.  The body’s immune system starts attacking itself, especially the membrane surrounding the joints.  It is very painful and destructive.  RA is also a systemic disease, meaning the whole body is involved.  There is no cure for it, but the earlier it is caught, the better an individual’s chances of going into remission.

McKinnon also advocates for patients with RA. “RA changed my life plan, family dynamics and career. “    She has had RA for 30 years.  When she first began to feel bad, she went to her physician but he didn’t believe her symptoms.  “My GP (general practitioner) thought I was hysterical.  I tried another doctor. That GP said take 12 aspirin a day and come back in 3 months.”  Because of the delay in her diagnosis, McKinnon has joint damage,  “if I meet you, you can see by my hands I have RA.”

This is one of the reasons McKinnon advocates for improved education and awareness, especially among providers, “Not much time is spent on the musculoskeletal system in medical school I hear so we need to bring awareness of symptoms to Primary Care Physicians.”

Since her diagnosis, treatment for RA today has improved.  Yet because of the disease’s complexity, medications used in treatment regimes are even more complex. Corticosteroids and immune suppressing medications, like methotrexate, are used.   Treatment requires sophisticated multispecialty care.  Unfortunately building a specialist care team is often left to each individual patient.

That’s why support and information sharing can be so valuable.  “I… learned to advocate starting with me.” McKinnon says. “I share information with others with RA and provide support through online groups.   [I  also do] mentoring and patient partner activity in real life.”

McKinnon is also on the Board of the Sjogren’s Society of Canada.  Sjogren is another autoimmune disease characterized by damage to the salivary glands resulting in difficulty swallowing, chewing and speaking as well as affecting the tear glands causing sun sensitivity and dry eye.  It also can affect other organs. Around 30% of those with RA have Sjogren.

Additionally, McKinnon’s advocacy “centers on early diagnosis and treatment and access to very expensive drugs.”  This is because medications are not covered by Canada’s universal system unless you are low income.  She has also advocated on a national level working to get certain drugs approved by Health Canada, “I help advocate on how the healthcare money is spent and what diseases are funded for research.”

So, though she wishes that she did not need to rely on her husband’s insurance coverage to pay for her medications, she is otherwise satisfied being in Canada single payer system.  “I hear that a health plan member in USA gets on average 33 letters a year. I get none. No paper work.“

And she feels that’s something to smile about.

This post is based on the twitter chat #hchlitss conducted on September 27, 2012.  The transcript is available.