I just returned from the PCORI Annual Meeting (if you don't know about this amazing organization, check it out!) which includes patients, caregivers and patient advocacy organization representatives. I also learned about the concept of Patients Included, which certifies that at least one third of attendees are patients or caregivers. (As one health care professional who was not at the conference said to me: "Why would you do that?")
I attend a number of professional events every year, conferences for the American Hospital Association or the Cleveland Clinic or regional health care seminars. And there's a difference. It's not just that the patients are represented -- it's that they fundamentally change the way the conversations go. They are the experts on their own conditions. They also know that a condition doesn't exist in a vacuum. Just because you have breast cancer doesn't mean you don't also have asthma. Just because you have asthma doesn't mean you don't have HIV. Just because you have HIV doesn't mean you don't have Crohn's disease. Life is complicated.
You know what else people forget? We're all patients.
We're also almost all caregivers. We can be a patient, a caregiver AND a health care professional all at the same time! I think that for simplicity's sake we like to put everything in one box. But PCORI, remarkably, has a "check all that apply" mentality.
That's reality. But for the non-health care professionals who attend, they bring something different -- a way of approaching things with different expertise. They don't dismiss the costs of treatment, the number of appointments to arrange transportation to or the hard work that has to happen at home for medications, dressings or physical therapy. They constantly remind everyone that the plan needs patient input or it won't succeed.
I know it's taking a long time for this to sink in...but it's happening, and I think health care will be better off for it.