Careful what you wish for. Health equity and participatory medicine depend on the widespread meaningful use of patient family advisors. The trickle of such advisors should be a stream. Unfortunately, even if the supply could meet demand, health care administrators, researchers, entrepreneurs lack skill in making good use of patient family advisors. Libby Hoy leads Patient Family-Centered Care Partners, a small organization with a large vision for improving the quality, safety, and experience of healthcare through the development of authentic partnerships from the bedside caregiving relationship to the boardroom.
Patient expert, co-investigator, patient partner, subject matter expert, patient advocate, patient/caregiver activist. Many labels. Whatever you call us, invite those of us with different and unique experience, skills, and circumstances to sit at decision-making tables. Then treat us as equals and respect us. Then do something with what we offer.
Wow, four strokes by age 39. Quite a record for a sportswoman. A story about trust. First, no benefit of the doubt by the first diagnosing person thinking that Lisa was a drugged-out college student. Then Lisa’s trust in herself as a patient expert. Experience and engagement reinforce each other and builds confidence. No mystery that I appreciate I’m “good at naps.” So far, I don’t know how else to introduce young people to choices about health, wellness, or illness other than including them when someone in their lives is actively making such choices. Lead by example. Also, no mystery that I appreciate Lisa’s emphasis on telling her story. I’m delighted to be a channel.