When I am the steward
of my own health info
Ok it’s not a real haiku. It’s a false haiku. But I composed it just now, while walking home in the driving sleet from an appointment with my new, fabulous local neurologist.
The visit was a case-study in why patients should own and be stewards of their health information. Here’s what I brought to the visit, in a martha stewart-branded folder (that retro pale green color she seems to favor):
- my health history timeline, of course
- photos on my ipad of my symptoms at their worst, and at their best
- all of my lab test results from the past two years
- a list of my medications: dose and frequency, reason taking, who prescribed (taken from the very helpful template over at NovelPatient)
- medical records from my neurological diagnosis, including exactly how the diagnosis was made
- a list of my current symptoms and questions for the visit
- a summary of my recent self-tracking data and findings
- records from my past 2 years of neurology appointments
- The doctor loved the timeline
He said he’d never seen anything like it in his years treating patients with my condition, and he thought it would be very helpful for other patients to have their own timelines. As in other recent visits, I used it to walk him through the major neurological events in the course of my disease – crises, medication changes. It was a very efficient way for him to get a picture (literally) of my history. A benefit was that my gut timeline was there too, so he could see the interplay between neuro stuff and gastro stuff – which usually isn’t that easy. He asked if he could keep the timeline. “It’s for you,’ I said.
- I could show the full range of my symptoms, even ones I wasn’t having at the time
Using my iPad, I browsed through a gallery of photos I had created that shows a continuum of my symptoms from their worst to their best. I showed where my ‘average’ was. This was very helpful, because earlier today I was feeling very energetic and strong, for some reason; so I wouldn’t have been able to show my ‘weak’ self to him if I hadn’t had the pictures on hand.
- Bringing my lab results meant that I was able to avoid getting duplicate tests performed
I brought all of my lab test results from the last 2 years. Looking at them, the doctor decided not to do certain tests because he could see they were just recently done. He could also see evidence for some of the things I was telling him, like a new diagnosis that is pending – which is always helpful.
- I was able to contribute new information for my medical record
Recently I requested my medical records from when I was first diagnosed with Myasthenia Gravis, about 20 years ago. By poring through these old records, I was able to find the information about exactly how I was diagnosed – what tests were done, what the measurements were. I added this info to my timeline, and shared it with this new doctor. He said they didn’t have that diagnosis information on file for me, even though I had transferred my records over when I had seen his colleague in the early 2000s. Having this information helped give my doctor confidence about my diagnosis, so he didn’t feel the need to put me through painful diagnosis procedures (like my nemesis, the EMG).
Who were the winners?
- I felt in control of telling my medical story, and I felt like I did a good job of painting a rich picture of my medical history
- I felt listened to and understood (largely due to the awesomeness of the doctor)
- I saved myself the time and money of doing extra procedures and getting extra labwork done
- He got an ‘at a glance’ view of my illness; he ramped up on my history quickly
- He got visual as well as oral information, making everything easier to comprehend
- He got a lot of information that was not in my medical record with his office and that I would not have been able to tell him if I didn’t own my medical records
- They saved $ by not having to pay for a portion of repeat bloodwork and tests
Everyone was a winner! And that made me very glad.