Health 2.0 Austin held its first-ever code-a-thon October 19-21, 2012. Community members from every background came together for 2 days to focus on creating solutions to disrupt health and healthcare. Many participants were newbies (or n00bs as the techies would call them) to code-a-thons, which makes the results even more impressive! To see how we hacked for health and the results of the code-a-thon see our post on Codeo Roundup.
Codeo was an initial effort in my community to help realize the right to health through introducing the idea of patient-centered solutions. Solutions designed for ePatients like myself. To understand this vision, I write here about about the importance of Codeo, the evolving definition of ePatient and my identity as an ePatient.
Importance of Codeo to the right to health:
Through my work with Health 2.0 Austin, I get to see how endeavors undertaken in our city and across the world can help us realize the right to health. One day, one of the technologies started in a code-a-thon or hatched in innovative minds gathering together with unique ideas an perspectives will save someone by giving all the opportunity to be healthy. Through the use of technology as an instrument of empowerment, engagement, and education we can learn how to better treatments and heal each other.
Patient-centeredness as Codeo’s Focus:
The idea of Codeo was to make patient-centered solutions. In other words, solutions that put tools in the PATIENT’s hands that they might have the information to understand, process, and act on appropriate health-related decisions (or the principles of health literacy). With solutions like these, every person can become an ePatient and realize their own right to health.
What is an ePatient?
The ePatient movement was started by Tom Furgeson who wrote a white paper in 2007. He defined ePatient as individuals who are equipped, enabled, empowered and engaged in their health and health care decisions.
In introducing the white paper Ferguson quoted Charles Safran:
…[When Patients] participate more actively in the process of medical care, we can create a new healthcare system with higher quality services, better outcomes, lower costs, fewer medical mistakes, and happier healthier patients. We must make this the new gold standard of healthcare quality and the ultimate goal of our improvement efforts:
Not better hospitals.
Not better physician practices.
Not more sophisticated electronic medical systems.
Happier, healthier patients.
Before Codeo I asked other ePatients to give their input on the definition – how do they define themselves:
- EMPOWERED to take ownership of health (@MHoskins2179)
- EDUCATED, CONNECTED and SHARES (@Lalupuslady)
- Uses internet to gain information and tech tools to aid in COPING with disease (@HurtBlogger)
- Uses internet/social media to learn and ADVOCATE (@CarlyRM)
- Takes healthcare bull by the horns from A-Z leaving no stone unturned and ensuring A++ care of SELF and LOVED ONES (@AlexYperifanos)
I am an ePatient
I’m often asked why I contribute to Health 2.0 Austin and ePatient endeavors when I receive no recompense and no recognition. Why am I so passionate? Because I am an ePatient.
Many know that I have 4 autoimmune diseases, 12 chronic health conditions, have had 4 surgeries unrelated to those diseases and conditions including a jaw reconstruction, and have been in more hospitals than I’d like to recount. I grew up the daughter of an internal medicine doctor and pharmacist. I now take care of a disabled family member. I have seen all sides of health care.
Growing up, I saw how policies – i.e. the rise of managed care – fundamentally changed the practice of medicine and the doctor-patient relationship. I saw the frustration in doctors who only wanted more than 15 minutes with their patients to really help them stay healthy and/or heal. I saw sadness when patients were hurt by a system meant to help them and an insurance industry hastening the destruction of meaningful care. I also saw a pharmaceutical industry out of control – wasting money on marketing. It was an era where marketing meant fancy dinners, concerts, weekend trips all paid for by pharmaceutical companies.
As a child patient and then a teenage patient often in doctors’ offices for various procedures and injuries (mostly from figure skating) and other issues, I realized that I could never connect with my doctors. It seemed odd to me that I couldn’t get them to listen in a time I really needed them to listen to me, to hear me so they could help me. They didn’t know me, they couldn’t know me and thus when I needed them the most, I was alone.
When I developed type 1 diabetes (one of my autoimmune diseases) 1 week before my 20th birthday, (and subsequently the rest) I started to see that not only could I not connect with my providers, but I had to pay exorbitant amounts – even with insurance – for appointments and medications and other expenses. Studying international economics – in particular TRIPS – and the psychology of judgment and decision making, I came across a study that broke my heart – Insulin for the world’s poorest countries. I thought back to the marketing practices of pharmaceutical companies (though they started to reign in these exorbitant and ridiculous practices). I realized that insulin, which has been around for a long time and costs very little to make, cost at least $85 retail for one bottle. And this was 10 years ago – prices have risen since then. This has always remained in my mind and why one of my earliest posts on this blog was about The Costs to Live (a 4-part series).
But it wasn’t only co-pays and deductibles. It was hospital bills that weren’t covered, fighting to get my insurance company to cover more test strips, appealing insurance denials, drafting reasons to get out of network exceptions, helping draft letters from my doctors to get the care I need. You see, the system is set up to prevent care.
And then as I went through hospitalization after hospitalization, I realized the lack of patient safety. I learned that no hospital, no hospitalist, and in fact 1 provider out of 100 knows how to treat type 1 diabetes. For instance, in my last hospitalization they substituted Levimir for Lantus (a long acting insulin). My blood sugars were awful even when I wasn’t eating anything and so I looked up Levimir. Turns out Levimir is only active 18 hours. Lantus is 24 hours. The substitution was making me sick. Then there was the time they told me they gave me one drug which I had an allergic reaction to – only in gathering my own medical records did I find out it was a completely different medication I was allergic to.
I am lucky though – I am persistent enough to realize I have to advocate for myself and I have the resources to do so. I advocate for myself with doctors and insurance companies and forces that work against patients to get help. Not everyone has that opportunity.
Then I became a caregiver. And through my experiences with her, I became aware of how hard it is for someone disabled to advocate for themselves and how much a caregiver must give of themselves in the endeavor to ensure their health.
I went to law school thinking I’d be a prosecutor fighting for victims because I worked as a victim advocate. But I hated my first year, I cried every day wondering why I was there. And again my persistence to continue despite my frustrations led me in the right direction. I studied international criminal and human rights law at The Hague between my 1L and 2L years. I found my passion – health as a human right. And have worked since then to help us realize that right – pursing my legal degree with fervor and focus in health law.
Since my graduation, I have been looking for solutions to improve my health and the health of others, to fix a system that is not at all a system, to continue my fight for the human right to health. I worked for Texas State government wanting to influence policy. I worked for non-profits to help others get the care they need. I followed what tools were out there and which were developing to enable patients to take care of themselves. I gathered my medical records and tracked my health. I researched through the internet. I am heartened to see the world of health chttp://www.youtube.com/watch?v=m0c7hxcUjY8&feature=youtu.beare changing. Solutions are being developed. Still I look for more, I demand more.
Yet, in my professional career, I have been hesitant to talk about my life as an ePatient because of the stigma associated. I didn’t want to seem weak. I was encouraged to keep quiet. I was told to act “professionally” and that relating my experiences was too personal. In other words, I was going against bureaucratic establishments if I spoke up.
Somehow though in the last two years, starting with this blog, I have found my ePatient voice. With encouragement from people like Regina Holliday and mentors in my community, I have found that I can speak loudly. I need not follow the rules. I can use my experiences, education, and passion to make a difference. I can be assertive and have high expectations of others. I can expose the ugly, infected, wounds of our healthcare system. I can question everything.
So now I am an attorney specializing in health law and policy, I am a patient navigator helping others logistically and emotionally through the health care system, I am an advocate for the poor, I gather together minds in places like Codeo to find solutions. But above all, I am an ePatient – empowered, educated, engaged equipped, enabled, electronically connected through the internet, social media and mHealth – to ensuring health as a human right for all.