Patient Engagement? More Like 50 Shades of Paternalism

HIMSS-conferenceI was just in Chicago for the annual HIMSS conference, along with 40,000 of my closest friends. While standing in a long Starbucks line, waiting for some caffeine to fortify me for the long day ahead, I was approached by a young woman with an iPad asking if I would take a survey. Did I mention that it was a long line? I said, “Yes”. The first question asked me to choose from among several possible choices for the key trends being discussed at the meeting. I chose “patient engagement.”

It was hard to miss the message as I looked up at the giant HIMSS 2015 sign hanging over all 40,000 of us. “Engaging Patients, Transforming Health” and a second take just in case we missed the point, “Inspiring Action, Transforming Health.”

It was Day Two, and I had already been to several educational sessions with titles such as “Connected Health—2020s: The Years of Patient Centered Care” and “Staying Connected with Patient-Generated Health Data”. The sessions had great speakers with deep knowledge of the field drawn from their professional experiences as clinicians, industry leaders, community activists, and agency leaders drawn from local, state and the federal government. In fact, the only voice absent from the discussion—you guessed it!—was that of patients themselves.

Everywhere I went in Chicago’s cavernous convention center corroborated this observation. Industry leaders spoke with clinicians who spoke with government leaders who spoke with health system administrators. Stories coming out of HIMSS touted IBM launching Watson Health. Big data, connectivity, interoperability, consumer-driven. Meme after meme piled up on the digital health shores.

Totally absent was the patient voice. In the wake of backlash against a controversial change to the Meaningful Use Stage 2 rule, the Office of the National Coordinator for Health Information Technology reiterated its intention to promote and support consumer empowerment. What generated the firestorm? HHS proposed to roll back the Stage 2 measure that calls for 5 percent of patients to “view, download or transmit” to a third party data from their electronic health records, either through a Web portal or some other electronic means. If the changes go through, providers would just have to have one single patient do so throughout each year’s Meaningful Use reporting period going forward.

The towering irony here was that every part of the Health Information ecosystem touted the importance of engaging the patient for behavior change and for better outcomes. But the universal orientation was to tell the patient, all alone in the face of TEAM MEDICINE, how it was going down for him/her. Worse yet, we were told that patients who resisted were labeled in the EMR as “non-compliant” or—horrors!—difficult. And as we heard in many sessions, we now have ways to track difficult patients with hard data such as frequency of prescription refills, turning on their CGMs, connected cuffs, etc.

This was hard for me to hear since I’m among the converted in terms of the value of “connected health”. I got religion 10 years ago and have counted myself among the zealous for a decade now.

It’s time for the paternalism to stop, whatever shade it might be. We should all be cheering for real patient engagement. Each of us, if not a patient now, will be one eventually. As my surgeon friends joke, “We’re all pre-surgical.” So, here’s my suggestion. We need the hard physiological data to match up against the softer human interface. It will help keep all of us honest. But we now need to help individual patients form their own teams in order to boost their social connectedness to compete against the numbers assembled by TEAM MEDICINE. Let’s get started on forming our own TEAM PATIENT.


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