Patients Want This or That…Don’t Believe It

[tweetmeme you come across a health care article that implies that every patient wants this or that, i.e., electronic access to 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 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. OK…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 the RWJ that 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% 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 1/3 of adult patients at best. They certainly don’t reflect the opinions of my 88 year old mother or a lot of others people I suspect.

Don’t get me wrong. I think anyone who wants access to their medical record or patient centered care should get it. What I object to is when researchers attempt to justify a position or agenda when the evidence clearly does not support it.


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.

2 responses to “Patients Want This or That…Don’t Believe It

  1. As likely as when studies say that “women want” or “men feel.” Just because I’m of the same gender as a good portion of the planet doesn’t mean I’m in complete agreement with them. I often wonder about these claims that “most” people want full computer access to their records: I just don’t know these people, evidently.

  2. Good points here, Stephen. Even if you or I do want something, it doesn’t mean that ALL people do, too. I was recently speaking to a group of a couple hundred heart attack survivors (mostly men, mostly seniors) and was surprised by the overwhelmingingly consistent response that essentially was: ‘my doctor knows best’. One man put up his hand and said: “Why ask me? I’m not the one who went to medical school!”

    These were older people, most with multiple chronic conditions, who are just getting by living with what Dr. Victor Montori and his Mayo Clinic-based team call “the burden of treatment”.

    I was struck by the same conclusion: these are NOT the folks who are demanding EHR access. But maybe the 39-year olds in those focus groups are . . .

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