CONCEPT OF A NATIONAL PRIMARY CARE PATIENT-CENTERED OUTCOMES RESEARCH LABORATORY

Paul James; the ADFM Research Development Committee; Wilson Pace

doi:10.1370/afm.1538

The Association of Departments of Family Medicine (ADFM) recently responded to the Patient Centered Outcomes Research Institute’s (PCORI) Request for Information on how best to build research infrastructure for patient centered outcomes research (PCOR). We proposed the establishment of a national primary care PCOR laboratory, to build on the strength of existing family medicine practice-based research networks, clinical enterprises located in diverse underserved communities, and the research expertise of family medicine departments. We are committed to answering critical comparative effectiveness and patient-centered outcomes research questions of national importance. This national patient-centered outcomes research laboratory will be a clinical data network (CDN) and a patient-powered research network (PPRN). It will be a network with engaged clinicians who aspire to answer important questions at the level of the patient-physician dyad where critical communication and decision-making occur.

The proposed national PCOR laboratory will be:

Embedded in academic and clinical departments of family medicine affiliated with our nation’s academic health centers where expertise resides to study and translate new evidence into practice for health care teams including doctors and patients
Include existing family nedicine practice-based research networks (over 100 registered with the Agency for Health Care Research and Quality)
Situated in diverse and underserved communities, broadly inclusive of primary care populations
Tightly linked to communities through current established relationships among family medicine departments and their patients and community organizations
A laboratory for primary health care transformation and dissemination
A network where physicians and other members of the health care team will engage in generating research questions, answering them and rapidly improving practice
Able to rapidly test and disseminate new findings into practice through the thousands of family physicians, nurse practitioners, physician assistants, mental health workers, and clinical pharmacists associated with the departments’ clinical practice sites
Able to engage patients, clinicians, and health systems in all aspects of the research process
National in scale with the ability to conduct multiple studies simultaneously including large pragmatic comparative effectiveness trials

This response to PCORI was prepared and coordinated by ADFM’s Research Development Committee and submitted on behalf of the academic family medicine organizations (North American Primary Care Research Group, Society of Teachers of Family Medicine and the Association of Family Medicine Residency Directors) as well as the American Academy of Family Physicians and the American Board of Family Medicine.

In our 2012 survey, 94% of ADFM Departments expressed a desire to participate in a national family medicine research network. Fifty-five department chairs reported that they had research capacity to lead PCOR projects and an additional 55 departments had clinical enterprises that they will engage in comparative effectiveness and patient outcomes research. These allopathic, osteopathic, and large regional medical center family medicine departments represent both public and private institutions across the United States. Each region of the country (standard federal regions I–X) is represented in the 55 departments with the capacity to lead development for PCOR projects.

Our proposal builds on the significant experience of our departments in establishing and conducting research in PBRNs but adds 2 important elements. First, the ADFM proposed integrated national PCOR network will provide PBRNs with significant organizational support and national integration through development of a coherent CDN partnering with DARTNet to support data infrastructure. Secondly, our plan adds the core clinical practices of family medicine departments, many not previously involved in funded research, to the national research infrastructure. Our vision for an integrated national research network provides an important foundation for ongoing pragmatic clinical trials that are critical to comparative effectiveness and patient outcomes research success.

While family medicine has significant experience with PBRNs, it has not found funding support to build the significant research infrastructure required to perform large scale clinical trials that link a large number of PBRNs. Historically, large RCTs have recruited subjects divorced from the clinical care setting and community, and have been costly. The ADFM proposal to support an integrated national research network will enable large scale comparative effectiveness research and patient outcomes research in a cost effective manner. We believe that it has the potential to become a “reusable rocket” to power important future research.