What if medical records worked like Wikipedia?

I’ve been thinking about EMRs, electronic medical records, lately. It’s a subject, despite some professional experience, I don’t feel particularly close to. In fact, if anything, they are a source of consternation. As an industry insider, I see them as an expensive albatross around our collective neck. As a human centered design adviser, I see them as an encumbrance for both providers and patients. And, as a patient I see them largely as an opaque blob of data about me with a placating window in the form of a portal.

Which makes me wonder, am I obsessed with EMRs lately?

One of the reasons is certainly my personal interest in technology. And, while I don’t work in health IT, it’s natural to draw some connections. For instance, Wikipedia is consistently in among the top 10 most visited internet sites (it is currently number 6). And, say what you will about citing Wikipedia, but a 2010 study found it as accurate as Britannica. Google trusts Wikipedia enough to use it as the primary source for its knowledge graph cards; and we’ve all settled a bar bet by finding some fact where a Wikipedia article is the canonical answer.

The secret sauce for Wikipedia is in it’s roots. Literally, the root of its name, wiki, describes the underlying structure. Wikis were the internet’a solution to knowledge bases – large repositories of information about a process or thing. Companies had been using knowledge base software for years. Traditionally, a central maintainer, often a sort of corporate librarian, curated information, such as common answers to customer questions, so customer service reps could find it quickly.

Wikis democratize the knowledge base by allowing anyone to edit an entry. If you work for a company which sells widgets and you discover a new way to service the widget, you simply amend or append to the record in the corporate wiki. But what about the corporate librarian, they all cried. Except, no body cried.

It turns out, the network effect and the wisdom of crowds produce richer, more accurate databases of knowledge when the literal barrier to entity is removed. Make it easy for anyone to input knowledge, and the database and its accuracy grow. And so it came to be, since anyone can edit almost any entry in the largest encyclopedia the world has ever known, Wikipedia is remarkably current and accurate.

So I wonder … what if medical records worked like Wikipedia?

What if, my record lived on some commonly accessible platform; not open to anyone, but accessible by my providers and I? Maybe we have to do some kind of online handshake to mutually access it.

What if we could both edit the record, at the same time? My doctors could put in their notes and I could add my own. Or I could edit theirs. And they could edit mine.

Some readers may have concerns about the records’ integrity but as patient advocacy expert Trisha Torrey points out reviewing our own medical records can help spot and fix errors. And, as we know from Wikipedia, more eyes and contributors on a record increase its accuracy and reliability.

Another important lesson from Wikipedia is the idea of revision log, which Wikipedia calls page history. Any registered user can make edits to almost any record in Wikipedia’s vast online encyclopedia. Every time an edit is made the changes are logged, including the name of the user who made them. Anyone can review the changes and roll back some or all of them, or make additional changes of their own.

Imagine a medical record platform where patients can review the entries made by a doctor, and if appropriate make additions at it or even changes. For instance, after reviewing notes from my last physical, I discovered a small unimportant inaccuracy in my record. I take vitamin D supplements, and in the record, it was noted that I take vitamin E. Big deal? Probably not, but what if it was related to a prescription medicine? Providers are human and, as we know, to err is human, but by allowing patients to review and edit their own records, they would be able to fix errors.

A Wikipedia-style EMR would also better allow for patient-contributed data. There are often symptoms, observations or measurements which patients observe outside of the timeframe of a visit with their doctor: a week of poor sleep, a month of improving blood pressure measurements, an off-again, on-again skin rash. These kinds of things may not even warrant a phone call, but wouldn’t it be nice to log them directly?

Finally, and this may perhaps be my strongest argument for a Wikipedia-style EMR, we’ve got to do something about data exchange. Color me cynical, but I’m not convinced the health information exchanges (HIEs), offered by the major EMR vendors as well as technology giants such as Oracle, are the answer. Each EMR vendor has a financial incentive to keep their data in a proprietary format. Further, their customers are, by definition, the providers, not patients.

No, what we need instead is a common, centrally accessible platform where patients and providers have parity, equal footing. No one party’s observations, notes, measurements, or data trumps the other. A common platform would make it easier for different providers to openly collaborate, in front of the patient, virtually, in a common record. Your specialist could be literally updating the same records which you, the patient, are adding to while your primary care doctor is also reviewing and making edits. 

And there’s an extra credit reason we need a Wikipedia-style EMR. It doesn’t just promote or enable patient empowerment, it demands it. Owning our own data requires responsibility. It becomes the patient’s garden to tend. And its our right to tend those gardens. Stephen Ross and Chen-Tan Lin, writing in JAMIA, concur:

Overall, studies suggest the potential for modest benefits (for instance, in enhancing doctor-patient communication). Risks (for instance, increasing patient worry or confusion) appear to be minimal in medical patients.

This doesn’t have to be a pie-in-the-sky dream either. Someone could build a WikiEMR today. The platform which runs Wikipedia is called Wikimedia. In fact, it would likely meet all of the meaningful use stage 1 requirements … except one, and could be regarded as HITECH-compliant:

  • Anyone can download it, or install it on a hosted server. It can use the same strong SSL encryption which protects Epic, Allscripts, Athena and McKesson platforms.
  • It is free (a substantial discount off the price tags stuck to the EMR giants).
  • It provides user access audits and record edit history.
  • It is accessible via mobile and desktop.
  • It can use multi-factor authentication.
  • Wikimarkup, the simple language used on Wikimedia sites, supports mathmatical calculations so a WikiEMR could do unit conversions, Boolean checks, and data aggregation and reporting (including graphing).
  • It can generate reports for the MU core measures including abstracting 14 core objectives, 5 out of 10 of the menu objectives, etc.

What one, small, requirement is missing? As far as I know, Wikimedia is not a certified EMR. Anyone want to start a fund drive?

Nick Dawson is principal, better.  He blogs at NickDawson.net, where this article originally appeared.

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