A Modest Proposal for Patients (and Researchers)

One thing I can always expect in my personal adventures as a patient navigating the Healthcare System is a good dose of introspection, namely because I have to answer the same questions over and over again. After a back injury, I had to make the all the usual rounds, starting with multiple visits to my primary care physician, followed by trips to an orthopedic, a surgeon, two visits to separate MRI facilities, and a stop at a walk-in clinic to get an EEG before being cleared for surgery. The entire experience, which I’ve had too many times before, might be compared to touring a job fair – except that this one takes place over many weeks and places, almost always with a lengthy wait in-between.

The one thing I can always count on, though, is being asked to fill out yet another medical history form each time. The forms seem in retrospect to be more or less the same, but invariably involve slightly different questions, in no consistent order, and I don’t recall any of my providers seeming to be terribly interested in the results. (If you don’t believe me, try Google Images for “medical history form.”)

This need to constantly repeat the same sort of information over and over again in different  ways is pretty frustrating as a patient, and maybe even more so as a clinical researcher. I can’t begin to estimate the number of Medical History CRFs I’ve seen over the years, but I can sure recall how different they all were. In many cases, most of the data collected was too messy to use for any serious statistical analysis, and the possibility of pooling this data across studies (even for a single sponsor) is dubious. The questions are worded in many different ways, usually not coded to any standard vocabulary, and, for all practical purposes, not much more useful than unstructured text. In fact, it seems my providers mostly just these as images, where they can be safely tucked away until I’m asked to fill another form again from time to time.

As a long-time believer in data standards, I’m flummoxed to explain why we’re not all using standard medical history forms. Sure, the questions may vary depending on what type of specialty is practiced by each provider, or which therapeutic area is being explored for each study, but is that really an excuse for making each unique to each institution? Surely it must be possible to define a General Medical History form, which can be made publicly available, perhaps through Meaningful Use, that covers the most common conditions of interest. And then additional standard modules can be created that can be tacked on by specialty or therapeutic area. These will always ask the questions in the same way, and can code conditions to standard terminologies, including both SNOMED CT and MedDRA for research studies, and maybe even including ICD-9/10 as well. Coding might make it possible to actually make use of this data, when looking to identify patient populations in epidemiological studies, assess protocol feasibility, or even identify potential research subjects. What’s more, as a patient, if I was given a copy of this competed form, perhaps as a CCD document in XML format, maybe I could carry it with me (or store it in the cloud) as part of my Personal Health Record so I don’t have to keep filling out more forms with the same damned data over and over again. Seriously.

So, hello, why can’t we take this one small step for patient, subject and researcher-kind?

Meanwhile, if you think that’s not frustrating enough, let me tell you about what I have to do about my meds each time. But let’s save that for Part 2.