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PCORI November and December 2013

AAMC Patient Centered Research Newsletter

As I See It - PCORI and Patient- and Population- Centered Research

There's no denying that patient engagement is growing in both rigor and importance. Researchers are increasingly tapping the wisdom and perspective of patients in the design and execution of research. Stakeholder trust in the research enterprise is growing, but remains precarious–new inclusive research designs and the promising expansion of community engaged clinical and translational research will fall flat if we don't also hit the mark on dissemination and implementation.

Those persons who have engaged, or whom researchers hope to engage in the future, need to see the fruits of their participation communicated back and applied. Otherwise, we risk wasting the investments in patient engagement made by so many institutions, researchers, patients and their families.

We're selling ourselves short if we transform the way we engage patients in the creation of new knowledge, but then go back to business as usual, distributing the findings exclusively through established scientific channels. The practice of engagement must apply along the entire continuum from discovery to implementation.

This means including patients in the development of dissemination strategies and considering their needs, capacities and preferences when communicating findings. This approach should ease uptake on the patient side of things. But what about on the provider side? Can we match interventions and knowledge diffusion activities to the wants and needs of clinicians and health systems?

The profile of dissemination and implementation science (D&I) is rising as academic medical centers embrace the strategic importance of this question. Demand for training in implementation science is also increasing as researchers clamor to gain and demonstrate an expertise in this crucial area.

PCORI and the NIH CTSA program are throwing their weight behind efforts to strengthen and expand D&I. The latest revision to PCORI's Methodology Report released at the November PCORI Board of Governors meeting updates the agency's standards for D&I within the framework of patient engaged research, and recommends the development of centralized resources and capabilities at PCORI/AHRQ to achieve and support effective dissemination of research outcomes. And next March, the CTSAs at UCLA, USC and UCI will convene a day-long symposium on "Dissemination, Implementation and Improvement Science" to develop a strategy to expand and align regional investments in this area.

There are many more events and markers of progress than I can name here, a sign that the research community is taking seriously the expectations of patients to see the fruits of their engagement applied to practice.
Ann Bonham., Ph.D.
Chief Scientific Officer, AAMC

Of Related Interest

PCORI issues FY 2014 strategic plan

The Patient-Centered Outcomes Research Institute (PCORI) Board of Governors on Monday approved PCORI's strategic plan and a Fiscal Year 2014 budget along with a resolution for PCORI to commit up to $1.03 billion in research funding over the next two fiscal years.

ROCC members receive effectiveness research and implementation science awards

AAMC recently announced the winners of our joint AAMC and Donaghue Medical Research Foundation awards: Research on Care Community (ROCC) members Jeffery Gold, M.D. and Simon Mahler, M.D., M.S. A short summary of both projects has been posted here.

AAMC Annual Meeting sessions focus on implementation science

At the 2013 Annual Meeting, two sessions focused on educating clinicians for implementation science and individual and system competencies needed to achieve learning health systems. The Research on Care Community will continue to advance scholarship and collect best practices in this arena. If you missed the meeting, summaries and select presentation material from many major sessions are available on the meeting homepage.

New Infographics on AHRQ and PCORI funding for CER

The California HealthCare Institute recently released two infographics "Federally-funded CER: Where are we now and where are we going?" which analyze trends in funding allocation and future priority areas.

AAMC launches health equity subsite

AAMC launched a new suite of web pages dedicated to Health Equity Research and Policy. The pages provide up-to-date information about current health equity-focused funding opportunities, upcoming conferences and meetings, and recently published research. Users can also elect to sign up for monthly "AAMC Health Equity Research Updates" by emailing with their name, institution and title.

Making equity a value in value-based health care

This article by the AAMC's Philip Alberti, Ann Bonham and Darrell Kirch appears in the November issue of Academic Medicine. It crosswalks key disparities-related provisions in the Affordable Care Act to the principles and requirements of value-based health care.

Other Links and Resources

PCORI and AHRQ Partner on Request for Applications to Study Treatments for Uterine Fibroids

Harold Sox, MD, to Serve as Senior Adviser to Patient-Centered Outcomes Research Institute

PCORI Launches Community-Building "Pipeline to Proposal" Awards

Nomination instructions for the PCORI Board of Governors vacancy

A recent NEJM commentary concerning the EMA draft policy requiring the posting of patient-level data from clinical trials.

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