The Patient Centered Outcomes Research Initiative (PCORI) was established in 2010 by the Affordable Care Act with a mission to help people make informed health care decisions, and improves health care delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader health care community and a vision that patients and the public have the information they need to make decisions that reflect their desired health outcomes.

I am reporting in this post on the February 9 PCORI Board meeting in San Francisco that I attended remotely. See full slides here. I also attended live the October 2012 PCORI Patient Engagement Workshop in Washington DC and the November PCORI Board meeting in Boston. I completely support the mission and vision of PCORI and plan to continue my involvement in PCORI in the spirit of the S4PM mission: Catalyzing collaborative partnerships across the continuum of care to optimize health and health care. I am humbled by the challenges of meeting both visions.

The meeting was a full 8 hours, I was present for 7. Here are the highlights I chose – no means exhaustive:

• Funding: First 25 awards, totaling $41 million, announced in December, committing to more than $350M in research funding in 2013
• Five priorities:

1. Assessment of Prevention, Diagnosis, and Treatment Options
2. Improving Healthcare Systems
3. Communication and Dissemination Research
4. Addressing Disparities
5. Accelerating PCOR and Methodological Research

• Targeted funding announcements

1. Treatment Options for Uterine Fibroids
2. Treatment Options for Severe Asthma in African-Americans
3. and Hispanics/Latinos
4. Preventing Injuries from Falls in the Elderly
5. Treatment Options for Back Pain (new)
6. Obesity Treatment Options in Diverse Populations (new)

• Engagement: Involving stakeholders in topic selection, methodology, and mentorship for patient, stakeholder reviewers (non-researchers), upcoming regional workshops, and micro-contracts (a recommendation made and reported here by Boston-based patient reps)
• Rigorous Methods: Continuing to establish standards for PCOR, co-sponsoring a workshop with the Institute of Medicine (April 24, 25) on the use of observational studies, and a training course on the methodology standards at the Academy Health Annual Research meeting June 25 in Baltimore
• Establishing Advisory Panels

1. Advisory Panel on Addressing Disparities.
2. Advisory Panel on Assessment of Prevention, Diagnosis, and Treatment Options.
3. Advisory Panel on Improving Healthcare Systems.
4. Advisory Panel on Patient Engagement.

• Scientific, Patient, and Stakeholder Reviewers involved from start to finish in the review process to identify and fund the best science. During first round, the scientific reviewers reviewed first, culled to list of applicants, then patient stakeholders reviewed next. Board approved change to all reviewers work together with more training for all reviewers (patient stakeholders – about methodology. Scientific reviewers – working with patients) with mentorship.
• PCORI seems to me to be a learning organization. I sense that these folks are really trying and need our help. The Board members challenge the staff by asking difficult and necessary questions, working to keep it grounded in practicality and patient-focused. But our voices are necessary and welcome.

This is way too big for me or any one or three of us. Here are some options for S4PM members. Participate and share:

1. Review PCORI methodology standards
2. Attend any meeting – they’re all open to the public and have phone and video links.
3. Apply for an Advisory Panel seat
4. Suggest a research topic
5. Introduce yourself to Sue Sheridan, Director of Patient Engagement. She’s been quite responsive and respectful. Answers questions, keeps me posted and included. Prompt follow-up.