[Perryc]

Created by the Health reform law, the Patient Centered Outcomes Research Institute (PCORI) has been established and is now staffing up to administer upwards of $500m in annual research funding for issues about comparative effectiveness, delivery of services and management of quality of care which is the last step in the long road from test tube to therapy. This is a private non-profit corporation, funded by an assessment on 3rd party payors of health care (Medicare, employers), and therefore not subject to the whims of congressional appropriations. The Board of Governors is taking the name seriously and trying to be truly patient centered, which has been a theme of the Pipeline project for a number of years, as part of the healing process resulting from the active empowerment and self help of PWP. I am going to be an informal adviser to the Stakeholder Engagement Manager, who started this week, to help fill in the obvious gap left in the governance structure of the organization by the GAO, who were charged with selection of the 38 policy positions specified in the law, but selected no one with a serious chronic illness to bring our unique perspective to the discussion.

Perry


***SAVE THE DATE***

The Patient-Centered Outcomes Research Institute (PCORI) will hold a National Patient and Stakeholder Dialogue on February 27, 2012. We will present PCORI’s Draft National Priorities and Research Agenda and receive three-and-a-half hours of public comment by individuals attending in person and by phone. In addition, there will be two moderated discussion panels on the priorities and agenda featuring patient advocates, caregivers, clinicians and other stakeholders.

The event is part of PCORI’s effort to receive broad public input before the priorities and agenda are adopted and subsequent funding announcements are issued. A draft event schedule is provided below and a detailed schedule will be distributed soon. We hope you will register today to join us in person, watch via webcast or listen by telephone. You can register to attend and provide public comment here.

If you have any questions, please feel free to email us at info@pcori.corg.

What: PCORI National Patient and Stakeholder Dialogue

When: Monday, February 27, 2012
9:30 a.m. – 5:00 p.m. EST

Where: The National Press Club
529 14th St NW, 13th Floor
Washington, D.C.

***Webcast and Teleconference details will be circulated and posted on our website prior to the event***

Draft Event Schedule
9:30-9:45 Welcome and Introduction by PCORI Executive Director Joe Selby
9:45-9:55 Overview of PCORI’s input process on the national priorities and research agenda
9:55-10:15 Overview of PCORI’s national priorities and research agenda
10:15-11:15 Patient and Caregiver Advocate Discussion Panel
11:15-11:30 Break
11:30-12:30 Clinician and Stakeholder Discussion Panel
12:30-1:00 Lunch (provided)
1:00-4:30 Public comment (in person and by phone)
4:30-4:55 Observations from PCORI Board Members
4:55-5:00 Closing Comments by PCORI Executive Director Joe Selby