I’m committed to and invested in evidence-based health and wellness. I get my flu shots, exercise every day, and take my cholesterol meds. I check out studies so I’m informed when I make decisions with my neurologist. I am committed to patient-centered research. This week I was intrigued by a conversation in Washington @PCORI (Patient Center Outcomes Research Institute) about the challenge of following up with people using medications in off-label ways (no formal evidence, many experiments of one). The thing about evidence is how does evidence happen when there is patient and/or clinician creativity? People try something, it helps. They share on @PatientsLikeMe,@mypatientsMatch or social media. Someone else tries it. It helps some and not others. How does that experience turn into evidence? A challenge is that such data is either not collected or so spread out that it can’t become evidence. Plus, it’s tough to collect data about how stuff works. How can studies be done about people after they feel better? When you feel bad or are unhappy with your health, you’re more likely to pay attention and be responsive in any activity related to your health. But when you feel better, you want to get on with life and naturally pay less attention to health and ill-health. @FrankRiderMS of American Institutes for Research suggested that involving people with lived experience could help with follow-up. People with lived experience understand the life flow of fellow sufferers better than researchers and have the motivation to keep at it. How about when treatments are non-medical? Say, massage or acupuncture for pain relief. It’s even harder to create evidence.
How can we expand the scope of evidence?