Dear ONC: Nothing about me without my input. Design with me.

Dear ONC: Nothing about me without my input. Design with me.

Great post from physician colleague at Department of Veteran’s Affairs, @SueWoods . In particular –

A. Practice participatory design in federal health IT policy and programs.

Rather than a media campaign to “help consumers understand” HIT policies, stakeholders should gather more information about consumers, and practice participatory policy design. Patients and caregivers want policies that give access to all their information and allow them to contribute to their health record. We need to leverage untapped consumer power to drive policies that make sure we go beyond face-to-face encounters. Healthcare won’t be transformed until we get away from the tyranny of the visit. Here’s our sweet spot: both clinicians and patients want telephone and online care mainstreamed. Yet another example of how consumers are the #1 underutilized member of the team.

B. Ensure consumer access to all health information and ability to input information.

Patients can get access to notes, but rarely do. Electronic access will be ground-breaking (See Open Notes post). Yet we need more than unidirectional pushing information out. We need sea change, where patients and caregivers enter content directly, not have it transcribed by clinicians. Valuable patient-centered data, such as: a picture, a nickname, what clinicians should to know about them, their social support, self-reported use of medications and health risks, and whether they agree or disagree on problems and assessments. Yes, this will alter our notes, but what’s wrong with that? (see next objective) Patients and caregivers can work with HIT stakeholders about how notes should change and where greater accuracy will be gained if people input their own information.


(I agree!)

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Ted Eytan, MD