PCORI Board public sessions – where was the public?

PCORI, the Patient Centered Research Institute, met this week for only the third time since the board was formed. St. Louis, Missouri hosted the board and the methodology committee as they presented their first work products to each other and the public.

Don’t know about PCORI? You need to get up to speed fast. Why? Because the board seems sincere in their stated goal to use input from ALL stakeholders to inform the direction of the Institute and the research it will fund. And all of us are stakeholders – the intent is to change the focus from care of the sick to health for all. So think more broadly than medical care of the ill in clinics and hospitals to community, business, and other settings for health maintenance and disease management.  What research do we need to help providers and patients, communities and residents, make and implement informed health decisions? And submit your ideas now at www.pcori.org

The board was eager to ask the public to describe what patient centered outcomes research means to them. Unfortunately, there wasn’t much public in attendance at the open sessions. On day one, the 30-minute time allowed for open comment was twice the time needed.  Day two elicited only one comment. Why? Where were the stakeholders?

The board stayed after the public and work sessions to host the first stakeholder forum, which was well attended. That means around 80 researchers, clinicians, patient advocates, patient representatives, social workers, public health workers, payers, and business leaders in the St. Louis region were aware the Institute was in town. And yet only about a dozen people attended either day of public sessions. If you missed it, you haven’t missed out. Here’s what you can do:

1.Go to www.pcori.org and download the reports from the workgroups and methodology committees. If you have more time, you can access webcasts of the sessions.

2.Send comments to info@pcori.org The board is especially interested in learning what patient (or person) centered outcomes research means to you. And in learning what you consider to be quality health outcomes and what kind of information you need to make better-informed health decisions.  They also welcome ideas on how to engage all stakeholders in the opportunity to inform the PCORI process. So if you have suggestions for increased public participation and input in the process, send those in now.