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The Society for Participatory Medicine was well represented last week at the 14th  ICSI/IHI Colloquium. (ICSI is the Institute for Clinical Systems Improvement, a small midwestern think tank that’s way too poorly known.) SPM members who presented:

  • Jane Sarasohn-Kahn of Health Populi gave the keynote for Day 2
  • Jessie Gruman, four time cancer patient and founding co-editor of our journal, gave an important breakout session, about which I’ll be writing soon. (Jessie is founder and president of the excellent Center For Advancing Health.)
  • Brian Ahier presented on the status of health IT, as Meaningful Use rolls out. (“You can’t measure the improvements that you gotta measure, unless you have computers keeping track of it.”)
  • I gave a half-day pre-conference workshop titled “Participatory Health: Reshaping Patient Care.” I’m told the workshop had 40-50% higher registration than usual: interest in participatory medicine is strong.

An unexpected bonus was that right outside the workshop door, a poster presentation addressed some questions people often ask about patient participation and online health records:

  • Will patients with problems actually use a PHR (personal health record)? (Many observers say PHRs are a non-starter, a pointless exercise.)
  • Especially, will poor people use one?
    • Obviously, most don’t even have a computer.
    • Plus, computer literacy is necessary, and education levels among the poor are statistically lower. Frankly, are such people smart enough? (Many observers won’t come out and say it, but in my experience that’s what it boils down to.)
    • Note: People in lower socio-economic tiers are often referred to as “safety net” populations – they can’t afford insurance, so the only care they get is whatever “safety net” their state or region provides.
  • What about people with mental diagnoses – substance abuse, depression (low motivation?), etc.?

Those are the questions examined by this project, produced by an Emory University team headed by Benjamin Druss, MD, MPH and funded by a grant from AHRQ (Agency for Healthcare Research and Quality). They studied a population of safety net patients with at least one mental illness diagnosis and one or more additional conditions (co-morbidities).

Final results (including health outcomes) won’t be available until this fall, but clear evidence has emerged about PHR use (and benefits). Here’s the poster. Click to view PDF, 420k:

Emory poster (click to open the poster PDF)

The early impressions (bottom right) caught my attention: (emphasis added)

  • Access to computers less of a barrier than anticipated
  • Low digital literacy: Significant portion of participants; but can be successfully addressed with basic computer training.
  • Usefulness for coordination of medical care [is] less than anticipated
  • Interactions with clinicians: PHR print-outs help consumer take charge
  • Overcoming initial reluctance by clinicians: improved interactions with “activated” consumers and access to hard-to-obtain health information.
  • “Activated” consumers take over directing their own health care.
    • “Activation” was assessed using the well known PAM (Patient Activation Measure) test, developed at the University of Oregon and currently marketed by Insignia Health. (See the behaviors that are said to be predicted by PAM.)

I seized the opportunity to speak with Emory’s Silke von Esenwein PhD, who was there; she was lead author on the poster. I pulled out my Flipcam and did a very rough, quick hallway interview. (The ringing sound at the start is the hallway chimes, as we were called back into session.)

I’m fascinated with the evidence that computer access is less of a barrier than anticipated. But it’s not a shock:

  • Last month SPM member Ted Eytan MD showed me a snapshot of “safety net” people in his neighborhood, occupying every single computer the local library has.
  • Last November John Moore at Chilmark Research posted Smashing Myths & Assumptions: PHR for Urban Diabetes Care, which documented that for the urban poor, their handheld is sometimes their “medical home.” (And they use it!)

Silke agreed with the off-the-cuff remark at the end of the video:

Many people believe it’s just not imaginable that people who don’t have a good life could be good at this.

It’s too early to draw firm conclusions from this study, and any study should be replicated (though much medical research never is). But however well-meaning those concerns may be, it appears they’re superstitions, not science. So let’s get over that and get on with empowering, equipping and enabling our citizens, so they can be engaged in their care. [Update: see our 2014 post for the final paper]

All our citizens. With nobody left out.

p.s. The PHR used in the study was “My Health Record,” which was adapted by Emory for this purpose from Shared Care Plan, a free county-wide PHR in Whatcom County, Washington. What would be possible if everyone you know had access to such a tool? (Here’s the punch line: free PHRs do exist.)

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