This past week I took a road trip through the heartland of america to visit Cleveland, site of world-renowned medical center Cleveland Clinic. I was there to see 4 specialists and 1 internist over the course of 2 days; the goal was to outline my medical issues & mysteries and see if these doctors had any fresh perspectives for me. A family friend gave me special access to a program that planned and coordinated my visit; through this program, the doctors that I saw would all come together to discuss my case and put forth recommendations for my continued care. I was very excited to witness and document this model of care, as I know it’s very rare for doctors to really come together around a patient.
Perks of preparedness
Having made the appointments over 2 months before my visit, I was very concerned with doing all I could to prepare. I would be spending considerable time and effort (and money) on this trip, and I wanted to get the most out of it. I probably spent 10-15 hours preparing in advance of my visit. I did the following:
- Paid over $50 to obtain my records in PDF format from the University of Michigan – where I was seen for neurology stuff from 1992-2010, and gastro stuff from 2008-2010. I put these records on my iPad so I could easily access them.
- Put together all of my test results from the past 2 years in a folder
- Assembled a folder for each specialist that included any pre-visit questionnaires they had sent me, plus a print-out of my major complaints and thoughts related to each specialist
- Printed out 3 huge copies of my medical history timeline, probably 5 feet wide each, which was a bit unwieldy but did make the timeline very legible. I folded each one up accordion-style and put them in the specialist folders that I thought would be most interested – neurology, gastroenterology, and internal medicine.
- Bought a big binder to carry all my folders around with me
The visits were good – some more illuminating than others. The timeline was most useful for the neurologist, gastroenterologist, and internist, as I had anticipated. The neuro and internist especially took a lot of time to look at it and ask questions about what happened when – trying to learn all about my story. The gastro wasn’t as meticulous about asking questions about my history but he said it was ‘the coolest thing ever.’ Overall the timeline helped the doctors get a good idea of the arc of my illness, and it helped me remember specific events. Success!
I found that my extreme preparedness made my visits go very smoothly – I was able to answer almost every question the docs had for me. It was awesome to be able to pull up a 20 year old pathology report from my thymectomy, details about my autoimmune diagnosis, and the results of other procedures, right on my iPad. I also was able to pull up some pics of my symptoms, which was helpful because certain problems weren’t manifesting at the time. So between that and my ‘binders full of medical records’ from the last few years, there was hardly a question I couldn’t answer. Hit me with another! I was on fire. And most of the doctors commented on my preparedness, thanking me for being so organized.
Although I consider the communication between me and the doctors a great success, I’m not sure yet how much value I got out of the visit as a whole. I have a bunch of tests still outstanding so we’ll see if anything interesting pops up. There’s a chance that I won’t learn anything groundbreaking, which makes me feel sad, but regardless it is always good to get a fresh set of (10) eyes on my situation.
Was it really patient-centered?
Overall I had a pretty good experience, and the Cleveland Clinic is probably one of the best hospitals I’ve visited when it comes to finding your way around, natural light and soothing music, etc. It was a good user experience with regard to the physical environment, though so much more should be done to help diverse disciplines share info across their systems. I had to tell my story 5 different times for 5 different doctors; I had to get weighed and measured 5 times; I had to answer the same 10 basic questions for each doctor. They did have access to each other’s notes and lab orders via their EMR (Epic), but I didn’t see any of the docs actually read each others’ notes during my visits.
One misconception I had going into this set of appointments is that the doctors would all huddle up and discuss my case as a group. In fact, this doesn’t happen; instead each specialist will write follow up notes, which the internist then receives and compiles into a letter. I think she then follows up with them if she has questions. That was a little disappointing, knowing that with the exception of the internist, each specialist still sees me through a completely separate and almost mutually exclusive lens.
So no, I don’t think the visit was really patient-centered, though I am very grateful for the program that coordinated my visit and for the internist who will compile findings.
Big takeaway: patients gotta step up
My major takeaway is that the patient must take a lot of responsibility for curating their medical history; for knowing how to find certain pieces of information quickly; and for putting information in an easily-digestible format. This makes the patient’s visits more productive, and it helps the doctors learn more efficiently. Patients want to help, and our medical system must give them the tools & access they need; instead of charging me $50+change for my records, for example, what if I could have had them for free? Don’t get me started.
I also learned that it’s extremely difficult for doctors to actually assemble around a patient and talk to each other in real time. They are running from visit to visit, and there’s not room in their day (nor is there probably compensation) to add additional group meetings centered on one patient. Therefore, again, the patient has to take responsibility for being the “connective tissue” between the specialists.