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

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Patient Advocate–Pat Mastors

Empowered Through Loss

Creating A Patient Advocate

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

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

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

Simple Communication is Needed

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

What You Need To Know Before Going Into the Hospital

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

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

Have Your Family With You In Hospital

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

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

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

The Patient Pod

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

Design to Survive

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

“If IKEA designed health care…

1. We would always feel welcome

2. Instructions would be understandable to a 5th grader

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

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

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

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

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

8. Hackers (the good kind) would thrive

9. It would live to innovate.”

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

Pat Needs Your Help to Help Others

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

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

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

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

The New Patient Advocate: Sean Ahrens and Crohnology

Crohns-Colitis-Awareness-Week-CrohnologyWe don’t really think about our gastro intestinal system until we’re hungry or we get a stomach bug.  With a stomach bug, the pain, diarrhea, lethargy, and other symptoms make life miserable.  Imagine having these symptoms as a constant in your life.  Those who have Crohn’s Disease and ulcerative colitis live with this everyday.

So what’s going on?  What causes Crohn’s and ulcerative colitis?  We know that it starts with our immune system.  The purpose of our immune system is to attack bacteria, viruses and other foreign microorganisms that invade our body.  Normally, the gastro-intestinal system contains harmless bacteria that our body uses to help digestion and those bacteria are usually safe.  Unfortunately in people with Crohn’s and ulcerative colitis, there’s a glitch.  The immune system starts to attack these digestive bacteria causing an inflammation of the intestines.  Now inflammation is a normal response of the immune system, except, in this instance, the inflammation goes on and on and starts to harm the intestines, causing ulcers, intestinal wall thickening and other symptoms.

How would a healthy active 12-year old child react to getting Crohn’s? “You’re an average, normal kid in school” and all of a sudden you start having problems with your digestive system.  That’s Sean Ahrens’ story. “It was after a course of antibiotics for an ear-infection, which I got a lot of,” Ahrens remembers.  “I’ve lived with Crohn‘s for 14 years now.”

But Ahrens hasn’t taken his diagnosis lying down.  At age 26, he is a patient activist and creator of “Crohnology” a web-based patient community with attitude, and a lot of innovation. “I’m building as a new way for patients to share health information online,” Sean relates.

Crohn’s and ulcerative colitis are part of a larger group of disorders called “autoimmune conditions.” With these conditions, the immune system goes out of kilter, attacking the body.  Rheumatoid arthritis, lupus, fibromyalgia and multiple schlerosis are just a few of these disorders.  “Once diagnosed, I…realized I had a condition to which doctors had no solution.  That was really scary.”  In fact, 40 million Americans have heard those words from their physicians, “Autoimmune conditions—CATEGORICALLY have no cure.,“ Ahrens states.

Ahrens’s reaction was to look for help outside traditional medicine.  “When your doctor doesn’t give you a solution to your problem, you don’t just say OK .  You don’t just “trust” that we (conventional medicine) know everything. You search wide and far for things that will work,” Ahrens says.  In his quest for answers, he turned to fellow sufferers.  “I started the support group because it was connecting people that I found so valuable.”

Ahrens was at University of California-Berkley by then, studying computer science, “I was always really into programming.”  At the same time his support group kept growing, “when the group got too big for every patient to remember each other’s health experience— I found it a good idea to build a solution that could scale… I saw things like Facebook, Wikipedia and realized maybe this model could apply to patients sharing knowledge, “ Ahrens says.  “Crohnology” is the name of his creation.

Currently “Crohnology” has over 2,400 patients with Crohn’s and colitis from 40 different countries around the world.

 So how should people go about finding solutions to what ails them?  Ahrens is realistic about what is available on the web, “I still think the web is a bit of a wild west when it comes to health information,” he admits, which is why he’s trying a new approach, “I’m trying to program a better way to share this information — I think it requires a new platform. “

That platform is cutting edge, “The key parts of Crohnology are health-tracking, social network, and treatment knowledge-baseWe have an online health tracking interface that lets patients update their health over time.  That health tracking can take place on the patient’s mobile phone too. Over a simple web interface, or through SMS (text messaging). patients on Crohnology can also create a treatment “timeline”.  That treatment timeline has what treatments (medicines, supplements, diets, or mind & body) taken and when.”  In other words, patient can create their own abridged medical record online with current infographics.

Additionally, Ahrens is interested in people meeting people. “Patients can choose to go by just their first name and profile photo. But that’s the lowest you can go. I believe that real name and real photo thing is a requirement sean-ahrens-headfor real connection and engagement online.”  So anonymity is not an option with Crohnology, “We give patients tools to “meetup” in person, and establish REAL relationships with other patients. This is key,” he believes.

From the data that has already been collected, Ahrens has found that patients who crohnology have 99% of their patient experience behind them, which means a lot of “story” telling vs. tracking. The web is better for constructing data-dense history.”

“My fundamental tenet is that patients are experts in their own experience, and that experience is VASTLY underappreciated.”  Ahrens believes that patient advocacy is changing.  “I think online communities are the new patient advocacy groups.  It’s like the newspaper versus online news.  The medium has changed, and so the advocacy needs to move here.  If you think about patient advocacy groups, they are still, in a way, this old model of top down information.  Patient communities allow for the social revolution that has happened everywhere else on the web to happen to advocacy. Why do we need an intermediary to connect to other patients? There is no need,” Ahrens believes.

If you are worried about patient privacy, Ahrens isn’t. “Patients can identify themselves by just their first name and profile picture.  Patients own their data: they can download, port it to another service, or delete it completely at any time. As a result of this, I can literally tell you that crohnology, is the best corpus of patient knowledge that exists on the web. If you have Crohns or colitis, @crohnology is literally the best place you can go to learn about your options.”  For people who have heard there’s no way to cure a condition, having that amount of information would be wonderful!

Ahrens’ work is being supported by angel investors like Esther Dyson.  There is interest from others.  “But  what’s great about this is I’m not really interested in the money. Yeah I want to do well, but I’m trying to change medicine.   I think that single fact radically changes what we’re able to accomplish. “

Physicians haven’t been quick to embrace patient communities. “I think it’s kind of like asking a teacher to engage in a student discussion group .  They would help add insight, but the value is the exchange of peer experience,” Ahrens feels there is a place for physicians in patient communities, “but I’m not waiting around for them to join and get involved. I’m going right to patients to help them now.”

To learn about Sean Ahrens experience with Crohn’s Disease, a video by Larry Chu has been developed and posted here.  To learn more about “Crohnology” and to stay abreast of news and updates on the site, add yourself to this site.

For a transcript of the November 29, 2012 twitter chat with Sean Ahrens  go here.

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.

Skinny Jeans and Menstrual Apps

Susannah Fox speaks about her mentor, visionary physician, Tom Ferguson, with fondness.  As early as 1975, Dr. Ferguson was writing and advocating empowerment for patients.  In 1987 he began providing online health resources.  As the Internet evolved, Dr. Ferguson was at the forefront of the evolution of the empowered, engaged, equipped and enabled medical consumer, the e-patient.

From Ferguson, Fox gained an appreciation of health as being just one part of life, one of the many pieces of the puzzle of life.  At the 2012 Connected Health Symposium,  even as people self-track and become engaged with their health, Fox wondered how much self knowledge is really shared with clinicians.

As Associate Director of the Pew Research Center’s Internet and American Life Project, Fox has been providing information about the social life of health information, peer-to-peer healthcare and the use of Internet by those with chronic disease for over 12 years.  Fox shared  her most recent survey findings at the symposium.

According to Fox, 60 percent of Americans are tracking weight, diet or exercise routine.   One in three adults track health indicators or symptoms and one in three caregivers track their loved ones’ health indicators.  But, how are they tracking?

Surrounded by many people who are connected, technology savvy self-trackers, Fox had the courage to admit that her own self-tracking strategy does not involve scales or batteries:  she uses the time honored “skinny jeans method.”  That is, one owns a pair of jeans that one used to be able to fit into.  Striving to get back into those “skinny jeans” is the life goal of many women, myself included.  We monitor our weight and fitness via those jeans.

Around 50 percent of those who were surveyed are tracking in their heads–they use the “skinny jeans” method.

One in three are still  using the pencil and paper method.  Only one in five use technologies like apps, websites or devices.

If the person has two or more chronic conditions, he may be tracking:  sixty percent of those with two or more chronic conditions track their health information with eight-five percent of them using a cellphone tracker.

Yet even though people are collecting data, they aren’t sharing it.  Two-thirds of data collectors do not share the data they collect.  Fox believes that this missing information may be useful to clinicians and recommends clinicians ask their patients about health tracking.

Another piece of information that Fox gleaned from her survey results is that people are not interested in apps that stand alone.  She thinks successful apps are those that are  integrated with online programs like Weight Watchers.  Weight Watchers has had 10 million downloads of their app which is integrated into the Weight Watcher’s popular support and knowledge system.

Fox’s take-away is that those who are creating apps, websites or devices need to make tracking as easy as it is when keeping up with it in the head.   She also impressed on her audience the need for innovators to create apps that are what the consumer wants to know.

So what do consumers want to know?  An interesting outlier may lead to a clue of what information men may be interested in collecting.  Her survey found that  popular apps that men are using are menstrual cycle tracking apps.   Hmm…wonder why?

Susannah Fox was one of the many amazing speakers at the 2012 Connected Health Symposium that occurred October 25 and 26. I will be highlighting the content of this symposium in the next few posts so stay tuned.

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.

Unlocking the Individual’s Ability to Care for Themselves*

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

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

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

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

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

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

Feedback seems to be a powerful motivator.

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

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

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

Another innovation developed by the Center involves improving medication adherence.

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

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


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

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


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

                “All of the above, but mostly patients,”


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

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


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

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

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

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

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

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


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

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


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

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

                The digital divide:

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

                “Low tech communities need most help”

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

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

Use of hands, eyes for text messaging

“The age ceiling to connected health”

“Risk of increased disparities”

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

Participants also proposed solutions and or disagreed with  these concerns:

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

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

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

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

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

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

Others suggested more ways to use connected-health:

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


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

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


Wonderful links were provided by participants:

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

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

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

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

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

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

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

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

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

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

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

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

Ipad apps for kids with autism @thinkingautism @shannonrosa

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

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

Patient-Centered Medicine Part 2

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Patients should not be patient with this.

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

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

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

 

Patient-Centered Medicine Part 2

WE ARE ALL PATIENTS!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Patients should not be patient with this.

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

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

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