Guest blogger Natasha Gajewski participated in the Flip the Clinic meeting at the Robert Wood Johnson Foundation. Below are her observations about the meeting and a thought you might consider. Natasha is an e-Patient and the developer of Symple, a symptom journal for he iPhone. She has been named a 2013 Stanford MedX ePatient scholar, TedMED Frontline scholar, one of ten Innovators to Follow by the Partners’ Center for Connected Health, and a member of the Startup Health Showcase at the mHealth Summit in Washington DC. You can find her on Twitter at @sympleapp .
Yesterday, I enjoyed the company of some of the smartest people in healthcare. Physicians, policy wonks, community health activists, nurses, designers, journalists, entrepreneurs, technologists and a tai chi master, all gathered at the Robert Wood Johnson Foundation to begin a conversation on “flipping the clinic,” a take on the Khan Academy approach to flipping the classroom.
It just so happened that earlier that week, my son’s math teacher announced that she would be “flipping the classroom.” She explained that the boys would be learning at home through video and textbook instruction, and then practicing what they learned the next day in the classroom. This flip would give her time to work with the boys individually, as each moved through the curriculum at his own pace.
So how would we extend this metaphor to healthcare? We covered a lot of territory at RWJF, including payment reform, care delivery and the role of technology. With sticky notes flying, we inspected the state of healthcare in America, and how we might improve things by flipping them.
As a patient myself, and as a witness to my father’s experience (he passed away last November), much of what we talked about seemed to come from 40,000 feet rather than terra firma. As Theresa Brown, a clinical oncology nurse, suggested, patients are kind of busy being sick. But there were some nuggets that I could hold onto.
One was John Moore’s (Atelion Health) idea of “scaffolding the patient towards autonomy” which I think means teaching patients about their disease, how it affects their body, their treatment choices, and why they work. Self-prescribing sounded less plausible, but collaborative titration not only made sense to me but was something I did when getting off of prednisone.
I was more skeptical of a plan to train patients into experts, but that’s due to personal bias: in my experience, once healed, people abandon their patient communities and return to their normal lives. If John’s team can train and retain patient experts to counsel the newly diagnosed or chronically ill, he will have solved a very big problem indeed.
Rishi Desai’s story of a 14 year old chronic TB patient who monitored, reported, and even suggested next steps based on her liver enzyme profile was heartening. Formerly a pediatric infectious disease specialist, Rishi now works with Khan Academy to bring “open-sourced, high-quality medical and health education content to anyone, anywhere.” Rishi described a sense of great satisfaction, even joy, at empowering this young patient to participate so deeply in her own care.
Which brings me to this final and startling nugget: joy and satisfaction are apparently in short supply amongst care providers, particularly those on the front lines. So I find it curious that we focus so much attention on salvaging the wellbeing of the patient, when studies and the emerging crisis in primary care suggest that more attention needs to be given to improving the wellbeing of clinicians.
So here’s a flip that we might consider: could patients cure clinician burnout and other problems in our healthcare system? We can only find out if we invite more patients to the conversation, a flip that is long overdue.
As a patient who went undiagnosed with disabling Cushing’s Disease caused by a pituitary brain tumor for over 25 years before finally diagnosing myself, I sought to bring meaning into my life once I got the answers I needed. I wanted to take the devastating lessons I learned (I saw over 100 doctors) and turn them into survival strategies for others. I became a patient advocate focusing on case analysis and research, and was amazed at how many chronically ill patients-turned advocates share similar stories and motivations.
The desire to make a difference and find meaning in suffering runs deep and strong in patients, and many are already experts but don’t realize it. By teaching each other how to be project managers of our own health, we can take the burden off of doctors to manage our documentation where they may potentially make underinformed decisions. We can truly be collaborative partners.
For those who are too sick to advocate on their own behalf, or are not making sufficient progress, social workers who specialize in patient advocacy should be assigned to them to help obtain accurate diagnoses and appropriate treatment, as well as navigate health insurance, disability, etc.
Until this kind of department can be established, nonprofits must fill in the gap, and take on the risk. Most nonprofits focus on specific diseases — there are very few that offer assistance to those who are undiagnosed. Grants, which also are often disease-centric, need to be made available to these kinds of nonprofits.
CLear paths of recourse must be identified and communicated for all patients who believe they have experienced irresponsible, unprofessional, or criminal medical advice and/or treatments. It’s not enough to have a third-party quality review agency listed on the clinic’s website (if they even do that) — patients must receive in writing notification of this service with every visit, including specific steps they can take. This will reduce the burden on good doctors to handle upset patients who don’t understand or trust their decisions, and protect patients from doctors who shouldn’t be practicing.
Website services like CrowdMed and UpToDate (both professional and patient-level information) should be free to those who submit a letter from their doctor or recent health records showing they have a valid concern.
Patient experts are out there, and so are the people who are organizing them, like WEGO Health. They need substantial resources to succeed.
Ellen
World Undiagnosed Day Initiative
UndiagnosedDay.org
Thanks so much your reply. I hesitate to speak as a patient advocate because I’m acutely aware of how individualized our experiences are. For me, and my relatively uncommon disease, there simply weren’t enough patients to make a robust community, and the few colleagues I found were mostly seekers of information rather than experts. There are many fine patient communities out there, just not one that met my needs. Maybe I should change that :-)
This really caught me: “…could patients cure clinician burnout and other problems in our healthcare system?”
One of the most meaningful changes in the way I practice medicine (primary care) has been my recent adoption of a more transparent and collaborative approach to documenting the office visit. I attempt to do it out loud during the visit, documenting ‘our’ work and plan rather than ‘my’ thought process and intent. The intent when I started was to make sure that the patient had access to their information – and my approach does help with this. But the bigger impact has been the change in how the visit actually feels.
Based on my experience, anything that lowers the barriers between the patient and the clinician and fosters communication and collaboration is likely to be very helpful – restorative – to the clinician.
Peter
Peter, you also provide summaries of the visit to the patient, to make sure that you are both clear about what’s happening, right? My most recent healthcare event has left me wishing for this kind of “level” discourse in all healthcare settings. I applaud the work you do.
LOVE. THIS.
I don’t really agree with the theory that once healed, patients return to “normal” – that’s a dryer setting. I know that I’m cancer-free, and have returned to the hurly-burly that passes for “normal” in my world. However, it was that very experience that truly made me an expert at participatory medicine.
I’d been a medicine-as-team-sport player when advocating for and managing my parents’ care, and swung into action on my own behalf when the cancer troll appeared. Now I find myself using my professional skills as a writer and broadcaster to help educate others on the importance of becoming team captain of their own participatory medicine crew.
Delighted to hear that Khan is so deeply committed to healthcare education. I’ll have to start taking some courses!
Rishi is so compassionate and excited about what he and the Khan team are doing that he will be a wonderful asset to the participatory medicine crew.
As a primary care physician I frequently encounter patients who say “I read about ______ on the internet and I’m concerned that this is what is wrong with me. I bet you hate it when patients say that” I always say “NO! not at all, PLEASE help me out with your diagnosis and tell me what you are worried about.” I might, in fact be clued in to something that I hadn’t thought about diagnostically, but just as important, I might be able to reassure the patient that their clinical picture doesn’t line up with the thing they are worried about. I personally find it much more difficult to care for the patient who is disconnected from their illness and just wants me to “fix it” . There is a national organization of physicians who try to practice with relationship-based, patient centered care called the ideal medical practices. We are each independent physicians (not employed by the organization) and you can find out more about our mission and look at the map of physician practices at http://www.impcenter.org. Kristin Oaks
Kristin, Ideal Medical Practices sound fantastic! I look forward to learning more (and finding a local practice).