An Update: The Patient-Centered Outcomes Research Institute Meeting in New York

After urging readers to attend the Patient-Centered Outcomes Research Institute (PCORI) daytime meetings in New York on Monday and Tuesday of this week, I have to say that after attending day 1, I was disappointed. That’s because it turned out to be primarily a business meeting with a mandatory public invite because PCORI is federally funded.

Members of the audience sat passively in the audience because they were not part of the PCORI Board of Governors. Therefore, plenty of the discussion went on as if we were not there. You may as well have been behind glass. No agenda or handouts were available on site for the audience, but I was told that materials were posted on the PCORI website the day before.

The day’s events were webcast, but the webcast is no longer available. A public comment period was part of  both days. Most commenters in the Monday session pressed for inclusion in the work that follows.

I don’t fault PCORI for the way that the day unfolded. The group is just beginning. And I regret that I was unable to make the evening discussion forum, which was set up for public discussion.

I was impressed that some of the Board of Governors went out of their way to engage participants during the breaks, promising to move towards inclusion of the public. I have hopes that if PCORI involved the public and patients in a meaningful way, and from the outset, perhaps health care research would focus more on what matters to patients, not what researchers assume should matter to patients.

Involving patients early on would also have a more far-reaching societal benefit: more Americans would see firsthand the potential of healthcare research and healthcare reform to work for them.

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