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Long-time readers will recall a hallway conversation I had at a conference in 2011 with Silke von Esenwein PhD of Emory University’s Center for Behavioral Health Policy Studies, who was presenting a poster with preliminary results of a study in process. The post was titled Safety net populations do benefit from online PHRs, and included the poster PDF and video of that conversation.

As the post noted, this was a significantly challenging population, with features I’ve often seen cited as reasons “patients can’t be trusted as capable partners”: these patients were poor (at a safety net provider), had a mental health problem, and had a chronic comorbidity. In this population an especially important part of “patient engagement” is coming in to use the services available to them.

The final paper was published recently in Psychiatry Online, and showed the opposite of that expectation: even with all those challenges, patients who were offered access to a PHR became significantly more engaged than those given “usual care.” Here’s a bullet-ized reprint of the conclusions:


  • Patients used the personal health record a mean of 42.1 times during the 1-year intervention period.
  • In the [group that was given a PHR], the total proportion of eligible preventive services received …
    • increased from 24% at baseline to 40% at the 12-month follow-up, whereas
    • it declined in the usual care group, from 25% to 18%.
  • In the subset of patients with one or more cardiometabolic conditions (N=118), the total proportion of eligible services received…
    • improved by 2 percentage points in the personal health record group and
    • declined by 11 percentage points in the usual care group,
    • resulting in a significant difference in change between the two groups.
    • There was an increase in the number of outpatient medical visits, which appeared to explain many of the significant differences in thequality of medical care.


  • Having a personal health record resulted in significantly improved quality of medical care and increased use of medical services among patients.
  • Personal health records could provide a relatively low-cost scalable strategy for improving medical care for patients with comorbid medical and serious mental illnesses.

e-Patient Takeaway:

Tools like this can significantly
enable patients and drive engagement.

  • In my speeches (and in Let Patients Help) I often note that it’s perverse to not give people tools and information, and then complain about how inept they are. In my experience when new tool ideas like this are presented, providers often think about the worst patient who’s walked in their doors. That’s understandable, but it’s not the best way to see what’s possible.
  • That resonates with OpenNotes, which we’ve often written about here. That study showed that providers’ fears (about patients being unable to handle the information, and not even wanting it) were just plain off base. Understandable, but not supported by the evidence.

At a deeper level, that disconnect shows me that medicine needs to find a deeper conceptual framework for understanding shortfalls in what the system should be achieving. If we view medicine as being “all about the brilliance” – the skills clinicians learned in school and honed in practice – we’ll interpret any shortfall as meaning “Not enough brilliance” or “they didn’t listen to me – what am I supposed to do??” Those skills and brilliance are indeed great (they saved my life) – but in that paradigm, this study’s results are hard to explain.

But if we broaden the scope to say that effective practice also means both parties need access to the plan, in order to do their part, then this study makes perfect sense. Surprise: even with triple-threat challenging patients, a PHR can produce a significant improvement.

As a computer geek, I look at this and think “Isn’t that wonderful?? My lovely information machines, improving the human condition!”

Go review the results again, above.

The challenges of navigating culturally tricky studies

Both this study and OpenNotes had to be carefully designed, partly because they’re paradigm-busting explorations, and paradigm-busters attract lots of scrutiny. If the study’s not solid, it’ll be picked to pieces by skeptics. Here’s to those with the brains and audacity to carry out a study like this.

Personally, I can’t wait to see how all areas of medicine transform, when patients everywhere gain access to all their data, and when software developers produce hundreds of tools for different people to meet their different needs. As the study shows, even significantly challenged patients can benefit when we make it easier to stick to the plan.



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