Everyone-Included Research

Person-included research, co-production, tragedy, grief, health equity, and relationships in life and research. Chat with Amy Price of Stanford and BMJ

Proem

Research follows life. Life comes before research. My diagnosis of Multiple Sclerosis preceded my need for research. Let’s talk about comparative effectiveness research (CER). CER is simply research that tells us that treatment A is more likely to be helpful than treatment B for a particular group of people in a particular set of circumstances. Before researchers conduct clinical effectiveness research, people have had symptoms, tried to manage those symptoms independently, got diagnosed, and then tried different therapies prescribed by their doctor. Some doctors tried treatment A, some treatment B, and even some treatment C. Researchers, clinicians or patients wanted to know if A was better than B and found funding to do comparative effectiveness research. Even if years of research occur and get published before I get diagnosed, my life happens before research becomes relevant; relevant in the context of my life, my circumstances, my conditions, my genetics. This perspective is the cornerstone of my advocacy for person-centered research.

Introducing Amy Price

I’m delighted to introduce my guest, Amy Price, a senior research scientist at Stanford University in California with the AIM Lab the Anesthesia, Informatics, and Media Lab.; Amy is also a research editor with the British Medical Journal (BMJ) in the UK. The BMJ is a patients-included medical journal. Everything Amy does involves putting laypeople with researchers and finding out how end-users, clinicians, researchers, and systems can work together and benefit each other — an everyone-included model. I first heard Amy’s name when the BMJ recruited me as a patient reviewer. I invited Amy as a guest because I knew that she was on the forward edge of including patients in research. She uses her positions and experience to advocate for patients and caregivers and mentor other researchers worldwide. One of the challenges of including people with lived experience in research is that they come with all their emotions, grief, and life. Amy’s husband died recently of COVID-19 acquired after admission to a hospital and then rehab facility with a severe break in his femur. I’m…