I attended the PCORI workshop in DC last weekend. Congress authorized PCORI The Patient-Centered Outcomes Research Institute (PCORI) to conduct research to provide information about the best available evidence to help patients and their health care providers make more informed decisions. PCORI’s research intends to give patients a better understanding of the prevention, treatment and care options available, and the science that supports those options. About 130 attended: patients, patient advocates, representatives of disease specific organizations, researchers, clinicians, home schoolers. PCORI aligns well with my personal mission: Increase the sense of balance patients, caregivers, and clinicians feel as they work together towards best health.
My main takeaways from the weekend are:
- Current research focuses disproportionately on the medical end of the health spectrum. Which therapy (mostly drugs) works better? Many participants would like to shift focus of research to the social and behavioral factors on the spectrum. Social factors are the conditions in which people are born, grow, live, work and age, including the health system. Behavioral factors include risky behavior, developing and following health plans, management of stress, pain and illness
- The gold standard of double-blind studies does little to help those confronting illness make decisions. As my neurologist tells me, it’s very challenging to apply research about populations to people. I am not a population. There are other models of sharing information and building on experience.
- Dissemination of research results is last funded and least rigorous. Many results are not published. Most patients don’t read peer-reviewed journals.
- The power gradient in research favors those managing the money. Rather than researchers seeking consumer involvement, communities could control the funding and seek researchers
- Health disparities affect communities (the unfair and avoidable differences in health status shaped by the distribution of money, power and resources at global, national and local levels). Research into health disparities can inform action by self-defined communities.
- The reservoir of experience, expertise, passion, and commitment of the PCORI participants is awesome, deep and diverse. I am humbled to be included in this movement.
I just noticed an even bigger gold vein in #2: patients are PEOPLE, not populations! This is Personalized Medicine 101. #pm101
Danny van Leeuwen
You’ve hit a gold vein there in #3 – community-controlled research funding would be OUTSTANDING.
Going to a PCORI Board meeting. Could propose it as a public comment.
Danny van Leeuwen