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Online Medical Records: Not All Patients Want All That

Anytime you come across a healthcare article that implies that every patient wants access to this or that – i.e. their medical record, patient-centered care, etc. – you can safely assume that the claim is wrong. Why? Patients are not a monolithic group –- they don’t all share the same motivations, preferences, beliefs or experiences when it comes to their health.

But let’s face. If you are trying to push an agenda, just saying some people want this or that is not the same as implying that everyone wants it.

Take the issue of patient access to physician notes in their medical record. Robert Wood Johnson (RWJ) recently announced their OpenNotes study. The OpenNotes project will evaluate the impact on both patients and physicians of sharing, through online medical record portals, the comments and observations made by physicians after each patient encounter. Okay…so far, so good.

Things begin to fall apart, however, when RWJ cites “a recent study“ in the Journal of General Internal Medicine, as part of the basis for the OpenNotes research. According to RWJ, the study found that “most consumers want full access to their medical records.” Since when did six focus groups (64 people) constitute a representative sample, e.g. most people?

The authors of the Journal of General Internal Medicine make the following claims about what patients think and want:

  • Patients are very comfortable with the idea of computers playing a central role in their care.
  • Patients want computers to bring them customized medical information.
  • Patients expect that in the future they will be able to rely on electronic technology for many routine medical issues.

Oh, I should mention that recruitment for the focus groups was limited to people who:

  1. Were concerned about health matters.
  2. Were less than completely satisfied with services and information currently available to manage their health.
  3. Used the Internet at least once a week for at least four different transaction types (e.g., banking, e-mail, and travel reservations).

The focus group participants tended to be younger (average age of 39 years old), well-educated (67 percent college-educated), and presumably healthier participants than the typical primary care patient panel.

Given the recruitment criteria, the attitudes and opinions expressed by these groups might reflect about one-third of adult patients at best. They certainly don’t reflect the opinions of my 88-year-old mother or a lot people of others I suspect.

Don’t get me wrong. I think anyone who wants should have access to their medical record. What I object to is researchers overstating their findings to support a position or agenda that just isn’t true.

REFERENCE: Delbanco, T., et al. Insights for Internists: “I Want the Computer to Know Who I Am.” Journal of General Internal Medicine 24(6):727–32.

*This blog post was originally published at Mind The Gap*


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