Putting Patient Engagement To Work, No. 2

It's time to mix in a definition. Here's one to grow on from Wikipedia:

Patient-centered care supports active involvement of patients and their families in the design of new care models and in decision-making about individual options for treatment.

As the parent of a sometimes patient -- a crude way of saying my daughter's patientness is an aspect of her Julieness -- my brushes with patient engagement have only been indirect: I've read or heard about it, mostly in conjunction with research studies; mostly intrigued by the idea that having patients participate can lead to better results -- which makes me typical. Indeed, per The Challenges of Conceptualizing Patient Engagement in Health Care: A Lexicographic Literature Review, published this past June, "the ongoing academic debate seems to focus principally on patient engagement's impact on clinical (and economical)* outcomes." 

I say those things to support my contention that "medical-scientific" is the prevailing perspective out there. Next I want to introduce two real-world approaches I believe represent it well.

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Clinics and private practices associated with Boston Children's Hospital are using a new online platform to help paint clearer pictures of how patients are faring between doctor visits. They're relying on parents, teachers and other caregivers to become "cultural anthropologists," in a sense, by having them observe and then upload reports about kids' symptoms, school performance, quality of life, and more. The benefits? Among others, docs now have more accurate information with which to work, office visits are more productive and on-point, and treatment decisions appear to be improving. 

For details, you'd do well to turn to Boston Children's Hospital Monitors Young Patients with Data from Caregivers, Parents, Teachers and Coaches (Sept. 12, 2014) from Sherri Dorfman's blog, Consumer eHealth Engagement.

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Patient Centered Outcomes Research Institute (PCORI) -- how's that for a medical-scientific mouthful? -- is a nonprofit organization that funds comparative clinical effectiveness research (CER) studies to determine which healthcare options work best in particular circumstances. Especially relevant to the focus here, PCORI claims to incorporate patients in its studies "more consistently and intensively than others have before."

What does that mean?

With regard to the research it funds, PCORI seeks to involve "patient partners" (definition: patients, family members, caregivers, and the organizations that represent them that are representative of the population of interest in a particular study) in all aspects of its projects: from planning, to conducting, to disseminating results. Whereas Boston Children's values patient partners for their willingness and abilities to make observations, PCORI values its partners for more and other things.

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I hope to comment more about both approaches in later posts. Two pre-comments comments: 

• I think one could safely say that PCORI's approach to patient engagement is more expansive than Boston Children's; 

• It's worth noting that PCORI's Engagement Staff** is a veritable DQ Blizzard, with social science and humanities grads of every flavor mixed in.

To that last point, I gather there are some business school grads on staff -- but not many. I'm curious as to why. How come? 'Cause I believe management, the field, can bring a lot to the discussion. 

It's where I plan to head next.

*I added the parens. More about the economics of patient engagement to follow.

**Get a load of these titles: Chief Engagement and Dissemination Officer; Chief of Staff, Engagement; Director, Patient Engagement; Deputy Director, Patient Engagement; Engagement Officer (2); Program Associate, Engagement (5); Project Assistant, Engagement