On Losing One’s Bladder

StomaCloak

What happens when the physician becomes the patient? What happens when the physician is a urologist and the disease he has, is something he’s treated before?

Joseph Salisz can explain what happens because he’s been there. He describes his profession, “I fix plumbing problems.” And the “ironic twist,” as he puts it, is that he had a “plumbing problem.”

On Being a Physician

cropped dr salisz/h1>One Sunday evening in 2010 he got a phone call that transformed him from a confident surgeon to a patient. “My family doctor called me and said I have a blood test problem…” His doctor told him that his PSA was 28. Prostate Specific Antigen (PSA) is a test for prostate cancer. In 2009, Joe’s PSA was 1.6. His reaction was, “I don’t believe it, let’s repeat it.”

“Surgeons are a special breed of physician….” Joe explains. “You…pay me to take things out, things that you are accustomed to…you…pay me to sew you back up….” Because of this trusting relationship, “I have to be in charge,” Joe continues, “…my confidence sometimes comes off as arrogance but who wants an unconfident surgeon?” He shares a surgeon’s adage, “A surgeon should be confident, have steady hands and have clean fingernails.”

His demand to repeat the PSA test was the last time he was in charge of his “plumbing problem.” The repeated PSA was 29. A biopsy confirmed prostate cancer that had invaded his bladder.

On Becoming a Patient

Joe found himself in a hospital linked to an IV pole, catheterized and prepped for surgery to remove his prostate and bladder. “This is a weird position,” he relates, “I’ve never not been in control. I’ve been doing urology for 22 years and prostate cancer was an illness I was accustomed to treating.”

Joe’s physician-to-patient metamorphosis included the removal of an essential body part—the bladder. The bladder is the receptacle for urine in your body. “You need your bladder to get urine outside of your body,” Joe explains. So what replaces your bladder when you no longer have it?–A stoma and a bag.

Joe had what is called a urostomy. The colon and the ileum (or small intestines) are two other organs in the body that when diseased may have to be partially removed and intestinal waste products rerouted: these are called colostomy and ileostomy respectively. In many of these operations, an opening is made in the abdomen for the waste products of the body, (urine for urostomy and stool for colostomy and ileostomy) to leave the body. The opening is called a stoma and the person’s waste products come out of the stoma and go into a plastic bag that attaches directly to the skin around the stoma.
On Being An Ostomate

Needless to say, it is transformative, and not in a good way. “What a body change! All of a sudden I go from a nice svelte surgeon with great abs to somebody with a hole through my abs and something red sticking out…and that’s not normal.” Research on the quality of life for ostomates (people with ostomies) finds that ostomates are likely to have a poor body image. In addition, they don’t feel confident, they avoid intimacy; they worry about leaks and odors, and basically drop out of the mainstream.

There are 100,000 new ostomy patients in the United States per year ranging in age from newborns to elders.

Joseph came home with a plastic bag attached to his abdomen and soon experienced this. “How can I be a physician? How will I be me?” Just one example of the impact of the body change on Joe was that he didn’t feel comfortable changing in the gym. He hated the sensation of a bag bouncing around on his abdomen so he stopped running. He lost confidence in himself.

Joe describes the bags this way. “These bags are sweaty…they feel wet, you don’t know if you are leaking…they’re scrunchy…they make a crazy sound when people hug you…and I needed a lot of hugs at the time…they’re odorous…and they are unsightly, they make a bulge in your clothes….”

Joe readily describes the support that he receives on a continuous basis from his family and his community. His wife started looking online for products that would cover the bag and make it easier for him to get back to his “old self.” Unfortunately the covers she found just didn’t do the job.

On Healing a Healer

Luckily Joe lives in western Michigan, a manufacturing center of the country. He brought his problem to a friend in the textile business whose specialty is material that is carbon impregnated. When the carbon is activated in the cloth, it adsorbs odors. It also wicks away the sweat and moisture that is trapped around the bag, reducing the risk of skin breakdown from bacterial or yeast infections.

So with a group of friends, Joe transformed from patient to an e-patient (engaged, enabled, empowered) inventor—the result is StomaCloak.

beige and black StomaCloak new photo 2014StomaCloak is an incredible product that is changing lives. Here are some comments Joe has received.

“I really like my new StomaCloak. It is especially nice after swimming or bathing. It somehow wicks away the moisture as well as protecting my skin. It fits over the whole pouch and is very comfortable. It also gives me a secure feeling in case I might have a leak, so I even wear it to bed.”

“So I purchased one last week…I do not have a pronounced smell problem, but this Cloak seems to regulate the temperature and I do no longer get that cold wet feeling, thinking I have a leak, but a constant warmth. I am ordering two more of the StomaCloaks today…”

“Right now StomaCloak is doing everything that it is suppose to be doing. I’m an Ileostomy and have tried every filter that the ostomy manufactures have offered and can say that I get two days wear time before my clothes start getting soiled. With this now I get 7 days wear time out of my pouch. So far this is working out great.”

Perhaps Joe’s favorite is a letter he recently received from a mother of a 16-year-old teenager. He had a colostomy for Inflammatory Bowel Disease and was feeling awkward about his stoma. His mother bought him a StomaCloak and with the StomaCloak, she wrote, “he’s been confident enough to ask a girl to the prom!”

Now that’s what StomaCloak is all about.

The content of this post is based on email correspondence and on a TEDX presentation at https://www.youtube.com/watch?v=jetnnOwcSrI with permission from the presenter.

Kathleen writes at Medivizor’s blog, Health Communication and Health Advocacy, The #HCHLITSS Tweetchat and for Legacy DNA Marketing Group.
First posted on LinkedIn

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From Bewitchment to Genetics: Cystic Fibrosis and Emily’s Entourage

“If it tastes salty when someone is kissed on the brow, then this person is hexed” (bewitched).”

“The child will soon die whose brow tastes salty when kissed.”

Cystic Fibrosis and Emily’s Entourage

Bewitched children…with salty skin died.   For centuries, children with Cystic Fibrosis lived short, terrible lives.  It took until 1954 for something to change. On learning the devastating news that their son and daughter, Lee and Kathy, had cystic fibrosis, two parents, Milton and Evelyn Graub, decided to do something.  Perhaps empowered because he was a physician, they found other parents, held their first fundraiser and in 1955, and founded what is now the Cystic Fibrosis Foundation (CFF).

Because of the research funded by CFF, the life expectancy of people with cystic fibrosis is now 40 years.

A 29-year-old Powerhouse

Emily Kramer300Enter Emily Kramer-Golinkoff, a 29 year old powerhouse who is determined to transform cystic fibrosis (CF) from a disease people die from to one that people live with.

Since birth she has been the focus of teams of health care providers because, as she states, “CF is an intrinsically entwined part of every single second, every single breath [of my life]…My health is part of every moment:  and care is what allows me to engage meaningfully and productively in all of this, my life.”

Social Connection Heals

Her journey with the healthcare system hasn’t always been easy.  For eight years her medical team ignored her life and her feelings with the result that it
disengaged me from my healthcare team and …made me emotionally distance myself from CF.  My goal was to minimize CF in my life and that is a dangerous goal for something that is intrinsically entwined in every fiber of your body.”

Her life changed when she moved to an adult CF treatment team.  This medical team listened and worked with her, integrating her care with her life. “I’m very fortunate to have a healthcare team that respects me, encourages my active participation in care and treats me holistically.”  But she is firm in the belief that luck should have nothing to do with receiving this type of care.  “I’m not okay relying on luck to find collaborative healthcare providers. Everyone deserves to be heard, valued, empowered in healthcare. I’m using my story to advocate for the enormous benefits of collaborative, socially connected care and participatory medicine.”

Social connection is crucial to health and healthcare, Emily maintains.  A little known fact about <a href="http://hchlitss.net/2014/06/20/transcript-chat-emily-emilykgkramer-golinkoff-cystic-fibrosis-research/”>CF is that people with CF cannot be together.  Those with CF produce mucus in the lungs.  That mucus holds onto infectious agents.  This is not a problem for the general population but it is a big problem for those with CF.  “Support is vital for dealing with chronic, fatal diseases. It’s really tough when your fellow disease compatriots are your biggest threats from a cross infectious standpoint. “  People with CF can pass on infections to each other with catastrophic and fatal consequences.  Social media has brought her together with other people who have CF.   She “stumbled upon an online CF community about 5 years ago and it changed my life. For the first time I realized other people were dealing with the same things.  Online community is my only safe lifeline [to other people with CF]. The online CF community provides invaluable information and support. “

And her medical team values her social media community–“My doctor now asks ME about creative treatment options I’ve heard of through the online CF community.”

Knowing Genetics

Protein_CFTR_PDB_1xmi250CF is the result of a gene mutation on the 7th chromosome that is responsible for producing CFTR.  CFTR is a protein involved in the transport of sodium and chloride or salt.  Changes in it effect systems in the body that produce fluids, like the digestive and the respiratory tract.  In 90% of people with CF, the pancreas degenerates and is replaced by fibrous cysts.  The lungs accumulate thick mucus, and bacterial infections eventually destroy the lungs.

Emily has advanced-stage CF and CF-related diabetes. Advanced stage CF refers to the degree of permanent lung damage that has occurred.

Although the Cystic Fibrosis Foundation has done outstanding work in moving the life expectancy of people with CF from age 2 to 40, “they are focused on the masses, the nearly 90% of patients that have the same mutation called df508.”  Unfortunately Emily’s mutation is different.  Though CFF does fund research for rarer mutations, the “majority of emilysentourage250their efforts are appropriately on the most common CF mutations.”  This is why Emily, her family, and friends have established their own nonprofit, called Emily’s Entourage.  “With Emily’s Entourage, I’m using my voice to try to direct research attention to rare CF mutations.”

In 2 ½ years, Emily’s Entourage has raise over $650, 000. “Those funds go towards accelerating research with a focus on rare CF mutations.  Currently we’re funding trailblazing work at UCSF that is focused on my rare mutation. We’ve been very fortunate to have wonderful researchers helping to drive Emily’s Entourage’s mission forward.  The aim… is to find new treatments and ultimately achieve control/cure for everyone with CF.”

In a post on the entourage website, Emily describes the reality that those who are healthy often forget, “The truth is that life is fragile and tenuous for everyone, but I think those of us with CF and other life-threatening illnesses live with an acute awareness of this reality every single day.”

Even so, she dreams.

First published on LinkedIn.

To learn more about Emily’s Entourage, visit their website at www.EmilysEntourage.org or connect with them on Facebook (www.facebook.com/emilysentourage), Twitter (www.twitter.com/emsentourage4cf) or Instagram (www.instagram.com/emilysentourage).

 

Based on the Health Communication, Health Literacy and Social Science #HCHLITSS Tweet Chat.  To learn more visit http://HCHLITSS.net

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

Three Activists on Awareness Months

February is National Heart Health Month, April is National Autism Awareness Month and October is National Breast Cancer Awareness Month.  How do those who are affected feel about these awareness campaigns?

 

Health Communications, health literacy and social sciences tweetchat invited three health activists to begin to answer this question.

 

AnneMarie Ciccarella (@chemobrainfog) started the discussion.

Speaking for myself and likely many others, October “awareness” has strangled advances in breast cancer…October breast cancer awareness is the greatest success story causing the MOST damage.  When started, it was important. Stigma attached to br ca had to be lifted. The radical surgeries had to be addressed… That was accomplished fairly early on. Now, it’s over 20 years of little **MEANINGFUL** progress and NONE with metastatic patients.  Speaking for breast cancer, we are AWARE, we’ve BEEN aware and it’s time to switch gears. too rooted in status quo & now very hard

                A participant asked, “Why is metastatic segregated out?  Why is there no progress?”

[Those with metastatic disease ]…are the dirty little secret .they taint the ribbon of success.  We’ve accepted “early detection” as good enough and it’s not. No new treatment advances. I had same chemo cocktail in 2006 as mom in 1987.  There is too much resource going to awareness, not enough for actual research.

I also make sure people understand there is NO CURE for breast cancer, it’s not a good cancer and even if caught early, there is no guarantee.

 

Katrina Moody (@katrinamoody) added to the discussion from the perspective of a mother of 3 children with autism.

“We promote Autism, Epilepsy and General special needs-related awareness efforts at the Café  (my site).

     She was asked if she felt that having a blog was “action.”

 It’s not – which is why I started the Awareness in Action campaign – to focus on ways for people to help.  The problem is that traditional awareness drives tend to concentrate on “awareness” but not so much on acting to help. I think it’s the difference between passive sharing and actual engagement.  Too many campaigns with no goals mean that there are lots of fuzzy pictures and sayings, hardly any action.   We still have the fuzzy pictures *grins* but are focusing on goals, actions for those involved to take.  We need to focus on action – help people see where they can take action in small and large ways.

Katherine Leon, a survivor of Spontaneous Coronary Artery Dissection (SCAD) also described her experiences with Awareness Months.

 

I have done one Komen Walk, supporedt our school autism efforts, work many hours with WomenHeart: National Coalition for Women with Heart Disease.”  This year, in March, I took heart health awareness to kids at school. Every day is a good day to focus on heart health.

With SCAD, [we are] attempting to do awareness and action at same time. Social media [is]key. I did awareness 5K for fund raising and a conference .

 

AnneMarie and Katherine realized that there is a difference between Breast Cancer and SCAD.

Katherine stated , “Right now SCAD is very grassroots. [We don’t have  corporate sponsors], so [we are] networking [to find]  SCAD survivors worldwide. “

AnneMarie remarked that she is concerned about the involvement of corporate sponsors in Breast Cancer Awareness Month.   “The pink stuff is all about the companies…  I am determined to change the conversation with breast cancer.  She summed it up, “SCAD needs awareness! We didn’t really need pink bats last Sunday, did we?”

One participant thought that  awareness months help find those dynamic people out there that are willing to help.

 

Katrina agreed that Awareness Months help in finding people with a newly recognized passion – the key is helping them act!

 

Another participant noted that,

“These campaigns are getting so complex and expensive that I’m not sure how much they yield for what’s important to patients. I think once “awareness” gets to be a routine yearly thing for each entity, it loses value.  The question is why do we do it. Are we truly not aware enough about breast cancer or autism? I think about the two w/o “months.  And all of the repetition inactivates me!”

 

When asked about taking action each guest contributed ideas.

Katherine stated that we

“Need to tie awareness to research.  SCAD Research is nonprofit educating/promoting/fundraising all at once. I really love RESEARCH.  Bob Alico, director of SCAD Research, says action comes from getting people to think “this can happen to me, [or] to my loved one.”

 Katherine initiated research in SCAD over a number of years.  She  motivated the  Mayo Clinic to  conduct research on SCAD.  “WomenHeart Inspire is key to “finding” survivors. SCAD survivors find  [the SCAD] group thru WomenHeart/Inspire, apply to Mayo research, learn about SCAD http://t.co/1tCXWqBE,

 

It is “Really frustrating when SCAD donations go to the general fund of the A[merican] H[eart] A[ssociation].  When you donate the Key is getting money to researchers, or at least organization with SCAD-specific program.

AnneMarie said,

“Find out “Who’s raising the money, how much is being donated and what is the charity doing? I  began to speak out about not being “a brand” for someone’s bottom line.  [I} Got active with Army of Women and Dr Susan Love.  Another thing I am trying to do is get the word out to be wise “consumers” with our donor dollars.

 “I don’t think people realize they can donate directly to researchers. I guess that’s the way I’ve been TRYING to take action.  [You] Don’t need to give money to any organization to take a cut . For example: they do high risk/high reward research and you can SPECIFY where you want your money to go http://t.co/i0w1T3uE .  This link to Rock Research Labs lets you decide!

Every major hospital has research areas. If research is what calls you, I know of a number of places that do research.  Here’s a blog post I wrote about donating …. http://t.co/dM1O4iwD  Cold Spring Harbor Lab may have a similar program. They do high risk high reward research, too.”

A participant suggested that “if you’re donating for research, get name of people doing research. Call and ask where to donate.”

 

Another participant wondered, “Realistically, unless you have it, a family member has it, or a close friend, do people really care? Will awareness change that?”

 

Yet nother participant wondered if doing something for others always means money.

 

According to Katrina, “No. … encouragement and support don’t have to always include money – I don’t think – on a personal level. Find ways to help patients/families directly, more personal involvement”

AnneMarie volunteers in the hospital visiting surgical patients.   Don’t ask “what can I do” Just Do it! Drive people to treatment. Make casseroles  for families.

One of the participants stated that there needed to be an Awareness Month on health disparities.

“ I’ll scream for awareness about them til people are sick of hearing and do something .“If goal is to make life better for sufferers, find out who delivers direct services to pts/families .  I’d rather give money to a social work department fund for transportation, medications, etc.  Find out what keeps people from getting what they need. It’s usually something we dismiss or don’t realize  The smaller and more personal, the better. transportation, resources, ability to leave an ill family member long enough to get out of house.”

The final thought reiterated by all was an admonishment to all of us:

 

“Don’t underestimate your capacity to make a difference. ”

 

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

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.”

Screen Shot 2013-03-24 at 7.26.33 PM

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

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.

Are Patient Communities an Effective Way to Deliver Care?

Are Patient Communities an Effective Way to Deliver Care?

Dr. Andrew Watson
Dr. Jeffrey Benabio

That was the question debated at the 2012 Connected Health Symposium on October 25.  Two physicians, Dr. Andrew Watson, Surgeon and Medical Director for the Center for Connected Health and Dr. Jeffrey Benabio, Physician Director of Innovation with Kaiser Permanente faced off on this topic.  Alexandra Drane, Founder of Eliza Corporation, moderated the event.

Dr Watson presented the argument in favor of patient communities.  Noting the Institute of Medicine’s figures that $750 to $900 billion are wasted by traditional healthcare in the US, Watson feels that the face-to-face system of care needs to evolve.  With so many US patients already online, online communities are a vehicle to reach people over distance and time and the medical community has an obligation to help organize this, he said.

Dr. Benabio began with a quote from another physician “Patients running online communities are like animals running the zoo.”  Although he felt this comment both shocking and insulting, he felt that it expressed the depth of his worry.   He also voiced concern about who sponsors online communities, especially pharmaceutical companies.

After these preliminary comments each debater worked to refute the other’s points.  Dr. Watson asked Dr. Benabio for the research proving that  patient communities cause harm.  He also refuted Benabio’s assertion that all communities are sponsored.  Dr. Watson believes that patients are waiting for physicians to engage.

Dr. Benabio continued providing examples he found on the Internet  to disprove the appropriateness of patient sharing.  For example, he stated that on one site a patient stated that he had a flu vaccine, followed by a seizure.  The patient said he never gets a flu vaccine because of this experience.  Several people “liked” the comment.  Dr. Benabio believed this statement would stop people from getting the flu vaccine.

The debate continued along the same vein.

Perhaps there was a flaw in the question that was asked.  Are patient online communities really about providing care?  Or are they doing something else.  The debate  illustrates the division  among physicians and other healthcare providers concerning patient communities.  However, in the end, patients are moving forward, reaching out to each other to exchange information, support and experience.  Ignoring online communities, standing back and watching, claiming that time spent online is wasted: these are unproductive attitudes. Getting involved with online communities will not only inform patients, it will also inform healthcare providers.  Communications is key and online patient communities are not going away.

What do you think?

After taking the survey please share your thoughts in the comments.  Thank you.

Motivated to Act: SCAD

The words, “We don’t know” pushed Katherine K. Leon to initiate research at the Mayo Clinic.  Why is this unusual?  Katherine is not a physician or a researcher.  She is a patient. But she believes that “with a rare diagnosis, the patient often knows more than the doctor,” and she’s taken action.

At age 38 after the birth of her second son, something unusual happened to Katherine.  This physically fit woman with no risk factors for heart disease had a heart attack.

It was caused by a spontaneous coronary artery dissection SCAD.  SCAD is an extremely serious and sometimes fatal condition. This is what happens in a SCAD event.

Coronary arteries, the arteries that feed the heart, have 3 layered walls. With SCAD, the wall develops a tear, causing blood to flow between the layers of the arterial wall. Pieces of the arterial wall can act as a flap, stopping the flow of blood and causing a heart attack or even sudden death.  Eighty percent of the people suffering from SCAD are women. SCAD can be fatal but Katherine survived.

Why had this happened to her?  No one could answer this question.

She found out that what had happened to her was rare.  And when a disorder is rare, there is often little interest in research.  It took Katherine over six years of searching to find another survivor of SCADS.  She found her online through the Women’s Heart online community which is hosted by Inspire.

Katherine didn’t know she was an innovator when she started looking for fellow SCAD survivors online.  She was just grateful not to be alone anymore.  And she wanted to figure out what made spontaneous dissections of the blood vessel walls occur.

Year after year she persevered.  “My motivation…I wanted to prove SCAD  wasn’t rare, that it could recur.  I’m  worried about my kids and others on the message board. They are loves.”

By the fall of 2009 she had found 86 survivors. “Finding each other around globe [is] one obstacle…it took time.”

She started to keep a database, logging  the age of each individual at the time of their SCAD event.  Other pieces of data she collected included how the event occurred, whether it happen around pregnancy or was the cause  unknown, which artery was involved and what treatment was received.   One of the challenges Katherine faced was building trust.  Katherine used screen names in her research.  “[I] slowly built a “database” with each conversation. Keeping [the] threads going [is the] key to attracting new SCAD survivors to Women’s Heart.”

Each individual in SCAD survivor group had their own ideas and theories about SCAD.  “[The] women were great with posting [their] own surveys. We researched ourselves through the online community. Each  woman who found the message board added new perspective and enhanced the research goals and agenda over time.”

Patient-initiated research is a new phenomenon and Katherine is the initiator.  She pulled trends from her data that she put together for a proposal. Specifically she found events occurred right around onset of menstruation, others were associated with connective disorders, like Ehlers Danlos, later FMD, but the largest group were associated with pregnancy and childbirth.  “Our conversations were the raw data.”

Once she had gathered information she started the job of pitching her idea of research.  First  she had to find the institution and medical researcher.  She realized that she couldn’t just say “we want to be researched. You need to be able to answer ‘Why should we research this disorder?”

“Researchers want diagnosed bodies to study. Total package!”  The fact that Katherine could point to a group of 60-70 patients gave the research physician  a ready-made database. “

Then she researched different research hospitals for research cardiologists that would be interested in a woman’s illness.  She found the researcher, Dr. Sharonne Hayes.   She’s “Interested, open and compassionate.”  And Mayo Clinc, where Dr. Hayes is located, is a large institution already attuned to social media.

The benefits for Mayo and Dr. Hayes are huge.  Katherine had provided them with  patients who “self identified, who were willing and eager. There was no two-year start up just to get consent. “

She has been a featured speaker at two conferences both at Mayo, the WomenHeart Symposium in 2009 and the Health Communications Summit held at Mayo Clinic Center for Social Media in 2011.  These events have “defined my role as patient advocate. Before, I just felt I was doing what needed to be done.”

And she did.

Taming the beast? Patient centered healthcare

In the US, do you know what is spent per person on healthcare?   In 2008 dollars, it was $7,538 per person (or per capita).  The country with the next highest spending is Norway with $5003  per capita.  US spending is 20% greater than any other country in the world and two times what is spent in European countries.The United States has one of the highest rates in health care spending growth.These are startling statistics.   So what are people in the US getting for their healthcare dollar? On “health indicators” like infant survival and life expectancy, the US ranks below other countries.  Why is this?  Well, for one thing, not everyone is insured in the US.  This means that many people put off screenings and other preventive care until it is too late…that will ratchet down life expectancy and ratchet up cost.   If moms- to- be don’t get prenatal care, their babies are more likely to be sickly and to die.  Again, an increase in infant mortality or increase in babies in neonatal intensive care…very expensive.  But are these the only reasons for the mismatch between spending and performance?  The National Institutes of Medicine (NIM) been grappling with this problem for a number of years and have clarified the dilemma.  According to the NIM, the two challenges are to assure that all have access to basic prevention and treatment and to ensure that all Americans receive the value for what is paid into the system.  Laying out these “fundamental healthcare challenges” facing the US  has been just the beginning.  Putting together a strategy for improvement has included recognizing the difficulty providers face keeping up with new interventions and strategies of care due to the rapid changes of the information age.  The strategy needs to take into account their difficulty discerning which services and what intensity of services are necessary or right for the patient. The answer is found in the idea of a “Learning Healthcare System.”  What is a Learning Healthcare System?  It’s a change in the healthcare paradigm.  It is also a way to make healthcare in the US “patient-centered.”   Instead of the provider controlling the information, information is shared among all the constituents.  In this paradigm the point of care is the “new knowledge engine.”  With the capacity of computers and networks, electronic health records are possible and sharing  information is easier.   Creating partnerships will be important, while maintaining security and privacy. Additionally, patient participation in their care will need to be enhanced and encouraged. Recent data from the RWJF website reveals that people in the US spend more time getting information on car buying than they do on choosing healthcare providers.  In choosing hospitals and physicians, half of all consumers relied on word of mouth recommendations from friends and relatives.  When choosing specialists and facilities for medical procedures, most consumers rely exclusively on physician referral.  Use of online provider information was low, ranging from 3 percent for consumers undergoing procedures, to 7 percent for consumers choosing new specialists to 11 percent for consumers choosing new primary care physicians.Communication between provider and consumer will be crucial, especially a willingness of all parties to learn.  Consumers will need to be engaged in the process. Of course, increasing health literacy (see previous blog entry) in the general population will be essential.The reality?  E-Health records are being created.   Now a repository and intermediary of research is being established with the Patient Centered Outcomes Research Institute (PCORI).   The PCORI website, refined the following definition of Patient Centered Outcomes Research. Patient Centered Outcomes Research (PCOR) helps people make informed health care decisions and allows their voice to be heard in assessing the value of health care options. This research answers patient-focused questions: 1.“Given my personal characteristics, conditions and preferences, what should I expect will happen to me?” “What are my options and what are the benefits and harms of those options?”3.“What can I do to improve the outcomes that are most important to me?”“How can the health care system improve my chances of achieving the outcomes I prefer?”To answer these questions, PCOR would: Assess the benefits and harms of preventive, diagnostic, therapeutic, or health delivery system interventions to inform decision making; highlight comparisons and outcomes that matter to people;Be inclusive of an individual’s preferences, autonomy and needs, focusing on outcomes that people notice and care about such as survival, function, symptoms, and health-related quality of life;Incorporate a wide variety of settings and diversity of participants to address individual differences and barriers to implementation and dissemination; and Investigate (or may investigate) optimizing outcomes while addressing the burden on individuals, resources, and other stakeholder perspectives.Increasing use of social media, provider and patient acceptance and participation  in e-Health records and information sharing, using effective health communication strategies,  all add to the excitement and opportunity for altering the US healthcare system from what is constantly referred to “unsustainable” to one that provides• The right care• To the right patient• At the right time For the right price.” (NIM, 2008)