Everyone-Included Research

Danny van Leeuwen Health Hats
24 min readNov 9, 2020

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

--

--

Danny van Leeuwen Health Hats

Empowering people traveling together toward best health. Pt with MS, care partner, nurse, informaticist, leader. Focusing on learning what works for people