Patient Engagement

If you want to talk patient safety, perhaps think of patients first

Everyone's talking patient empowerment, patient safety and patient engagement, but often, patients themselves are an afterthought.

Everyone’s talking patient empowerment, patient safety and patient engagement, but often, patients themselves are an afterthought.

Wednesday, the Senate Health, Education, Labor and Pensions committee has scheduled a hearing on improving healthcare through patient access to their own medical records.

The panelists include an academic, the leader of a disease-specific research organization and a vendor executive. Consumer groups seem left out, unless you count the research organization, the Multiple Myeloma Research Foundation, whose representative, Kathy Giudi, has that disease.

That vendor executive does happen to be Eric Dishman, general manager for health and life sciences at Intel, someone who has a compelling personal healthcare story to tell. Dishman had a life-saving kidney transplant in 2012 after genomic testing helped his doctors correct two decades of mistreatment and rid him of cancer.

No doubt, Dishman will be a good witness, but, as he noted at HIMSS14, he has resources the average patient does not. It still would be nice to hear from such an average patient who doesn’t happen to know the healthcare business inside and out, but maybe the panel will turn out fine.

I’m less willing to cut slack to the Patient-Centered Outcomes Research Institute, which planned its upcoming annual meeting without considering that maybe the $200 registration fee was a little a little expensive for patients who also had to pay to travel to the Washington, D.C., area for the event. (Nightly rate for the conference hotel is $238 plus tax; a second option is available for $222 per night.)

Just last week, a month before the meeting opens, leadership at a PCORI spinoff had an epiphany. “It recently came to our attention that some patient organizations found the registration fee to be cost prohibitive,” Tony Coelho, chairman of the Partnership to Improve Patient Care, wrote in a Sept. 8 e-mail to constituents.

PCORI thus decided to make a “limited number” of scholarships available to patients, caregivers and representatives of patient/caregiver organizations to cover the registration fee and travel. Bless their hearts.

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