By Nate Warren, Jean Baker, Deidre Baker, John Lind, Alex Harkins, & William JA Pinnock
Patients offer important opinions and suggestions regarding health care, as well as experience and information from the patient perspective. The OCHIN Patient Engagement Panel (PEP) ensures that patient voices are heard. PEP members work with policy makers, providers and researchers to improve patients’ health care experiences. The PEP works together with healthcare information technology and researchers to build better research studies and help people live healthier lives. PEP members gain insight and understanding of the research process and what sort of research is taking place in their doctor’s office. One of the ways to enhance PEP members’ understanding of this work is to support attendance at health conferences related to health policy, information technology and current issues in health care.
Recently, several PEP members attended a conference hosted by We Can Do Better, a nonprofit organization with the mission to create opportunities for nonpartisan civic education and engagement, bringing people together who share the values of better health care and health for all. Below are several PEP members’ reflections on their 2016 conference.
Jean: I thought it was a great idea because it went around to the parks, and if we end up with housing in inconvenient places it would be nice if we could have something like that, our help could go to where those people are living and not them having to figure out how to get to us.
Cornerstone Community Housing
John: They had a lot of great ideas as far for getting seniors involved with their housing, garden clubs… all that fitness stuff. Living well with chronic condition classes, lots of stuff to encourage people to do more with others and to join together as a community.
Bonnie: I think the healthcare and housing really goes hand in hand.
Alex: Key thing here, they went beyond what they normally do in an emergency room. They were thinking really outside the box.
John: I want to know exactly what my doctor has to say about me, so I don’t forget anything he might have mentioned during our visit. I want to hear exactly what he has to say. And maybe there is something in the note that I need to hear. And I need to recall.
Bonnie: I had my retina lifted three times. To hold it down, an acrylic liquid was injected into my eye. This acrylic liquid was known to block light and the doctor was aware of this, but I did not know and my optic nerve atrophied. If I had had OpenNotes then, perhaps I would have insisted on the removal of the liquid. OpenNotes would have been invaluable.