Since September of 2013, I have gone from being a girl who hardly ever went to the doctor, ever, to a girl who has seen over a dozen doctors in two different states.
How The System Works has been a huge shock. And a huge learning curve.
One of my coping skills is my Medical Manifesto.
It's a work in progress and can always be found under the 'Life and Medicine' link. But I though it might be a good time to share the latest version.
The NIH has put out a call for papers on research and treatment for undiagnosed patients. I flirted with the idea of sending something in, but whitepapers are not really in my wheelhouse (need some help with your latest software release - I'm your girl); and my experience with the medical world and how it works is still very new. But fortunately, that's why I have a blog --
My growing plan for
- Guidelines and Procedures for identifying, grouping, and treating long-term undiagnosed patients (Meaning: there should be some.)
- Criteria for classifying undiagnosed patients, either by symptoms, history, timeline, or some combination, for the purposes of finding effective treatments, ongoing search for diagnosis, and broader research into these new or uniquely presented conditions
- Leveraging new technology -- doctors have rejected older computer-based diagnostic systems because of the cumbersome interface -- having to type everything in for each individual patient. As the Internet of Things grows and becomes better connected, and cloudspace can consolidate records over different practices, hopefully an enterprising startup will build a better mousetrap soon.
- Biggest opportunity: not the app, but the translator. Something to take information from whatever format it's coming from (fitbit, iPhone, patient's handwritten notes...) and translate it into something useable. On the other side of things, doctors will need help knowing what to do with the sometimes random data they are presented with. Even if it could be helpful, doctors are not used to basing treatment decisions on the tracking data patients bring them. Side note: I foresee a big shift in the way medicine is taught and the way conditions are defined.
[I don't know how many blank stares I got when I tried to hand doctors my mish-mash of symptom diaries and calendars. And it was many months before I was in a mental state to deal with the data myself. What I needed was for someone to recognize what I was trying to do and give me the tools and guidance to make it happen; and then the ability to put the results to work.]
- Caveat: things should not be so locked-in that it becomes impossible to go to a new doctor with a clean slate. Around this part of the world, the two big players - Baptist and Novant - are fully integrated within themselves, but there's a firewall between them. Which, from my perspective, is a good thing. If I want a second opinion, I want it to be a truly new look at things, and not influenced by what's already been said and done.
- Care Management Coordinators -- Someone to manage a patient's care across doctors and hospitals, who would be able to identify which doctors would need to be seen, schedule appointments, keep an eye on prescriptions, give helpful tips (and possibly hand-holding) during difficult procedures. The role of medical caregiver has grown to the point that it is a full-time job for family members, and often exceeds their abilities. I'm not sure what group this profession would extend from but I'd bet money Nurses or PA's would be best at it.
- Better information exchange -- related to Care Management Coordinators: creating a better environment for both getting and giving information to patients. Doctors are notorious for interrupting patients, and in my experience are especially bad at asking the wrong questions. Pre-appointment checklists often miss key data points for a variety of reasons. On the receiving end, patients are often told contradictory information, especially in hospitals, and caregivers are on their own to collect and share information between themselves (ie: instructions about diet, medicines, therapy options). Even something as simple as providing a notebook for families visiting in the hospital to record important notes and the medical team's updates and instructions.
- Filed under: Miscellanea
- Hospitals, assisted living, and other places that tend to have large numbers of patients in wheelchairs should have pictures and windows at wheelchair-level height. I'm just saying.
- But the number one thing people need in life, let alone medicine, is a broad and deep network. A friend of a friend who is a nurse; A second-cousin who is a doctor; An aunt who went through a similar illness and can offer guidance and advice... With very few exceptions, the best doctors I've had by far are those with whom I've had even a superficial relationship before our first appointment.
There are many ideas and strategies out there for helping under-served groups gain better access to medicine -- cost is undoubtedly a factor and I'm not denying that. But so much
can be solvedis best-solved with expanding the depth and diversity of people-networks.
The flip side of all of this is that there are some fantastic entrepreneurial groups working on a lot of these issues. One big hurdle they face, though, is getting solutions into the patient community and getting doctor buy-in to recognize them as opportunities and not another headache-causing process they will have to adopt. Especially as an undiagnosed patient, I was in limbo without even a patient support network for a long time, and am only now finding that 1. many of my frustrations are shared and 2. there are some great groups out there trying to solve these problems, it's just that I would not encounter them in my doctor's office, if that's the only place I was looking.
*Misadventures in Medicine