Patient
engagement

September 3, 2019 -- "Patient engagement" is the buzzword du jour on healthcare technologists' lips. I have even attended conferences of which this was the title. Yet, it's not happening.

It is disappointing that tools and resources such as Google Health and Microsoft Healthvault didn't catch on with the public. We consumers of health care products and services could not be convinced to take charge of our health data and decisions. Why not?

In NEJM, A Taxonomy to Engage Patients: Objectives, Design, and Patient Activation (8/21/2019) the writers (from Harvard's Kennedy School) suggest that the poor quality of the tools constructed to date have prevented them from engaging patients and consumers. "designs... are not user-centered... and inattentive to users' needs." I have also blogged that "patient portals" suck.

How can we fix this? The authors propose a three-part strategy:

  1. Give patients access to health information and data;
  2. Let patients produce and share their own health data; and
  3. Enable patients to connect with other patients, with their providers, and with research groups.

On-line portals and communities do provide these capabilities but no single provider or site offers them all and none in a compelling way. The authors survey on-line health resources and describe how the successful ones succeed.

We need, the authors posit, to "[focus] on objectives and [understand] patients' motivation to engage." Notable successes are "peer-to-peer platforms (e.g., MyHealth Teams and Breast Cancer Straight Talk Support Facebook Community) [that] engage large numbers of patients... [providing] information as well as emotional support."

They observe that "...moderation is key... conversations [must be] carefully moderated to eliminate content that is inappropriate or not backed by scientific evidence as well as to maintain respectful interactions."

Also essential is ease of access via popular platforms such as Facebook with web and mobile (smartphone) apps.

What are the objectives of such sites and apps? The authors identify four:

  1. "Those that join patients... to health care providers;"
  2. "Those that connect patients to each other for support and peer advice;"
  3. "Those that make clinical information available to patients; and"
  4. "Those that [gather] data and ideas from patients... to advance research."

These are good objectives but can they be achieved? Will they engage patients? For highly-motivated populations such as disease sufferers, this is already happening. But what about the general public? When, will the majority of consumers say, as Dave DeBronkart famously said, "Gimme my damn data!"?

Alas -- given what I've seen of a passive public too readily accepting a paternalistic healthcare system and providers -- I remain skeptical.

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