The VA Women’s Health Practice-Based Research Network: Amplifying Women Veterans’ Voices in VA Research

Abraham Lincoln founded the Department of Veterans Affairs (VA) “to care for him who shall have borne the battle, and for his widow and his orphan.” While women have served in every U.S. military conflict since the American Revolution, the Veterans Health Administration (VHA) paid little heed to the specific needs of women Veterans for much of its early history.1 In parallel, there was scarce research focusing on women Veterans; indeed, female gender was often an exclusion criterion in earlier research studies. In that era, women Veterans’ voice in research was muted at best. The landscape truly began to change in 2004 with the national VA women’s health research agenda-setting conference.2 The 5 years following that conference saw publication of more articles that focused on women Veterans or included women Veterans than in the prior 25 years taken together.3 Despite these achievements, the chasm between the existing evidence base and the needed evidence base remains wide. The number of women using VHA has doubled over the past decade,4 and women new to VHA have distinctive health care needs.5 Thus, there is pressing demand for research on best practices for this special population.6 VHA investigators increasingly are stepping up to this call. However, a major obstacle hampers their research efforts: with women constituting only 6 % of Veterans in VHA,4 it is often impossible to recruit sufficient numbers of women at any one facility. For example, heart disease is the leading cause of death in women and a priority area in VA. Administrative data from 2009 indicate that only about 60 women (versus about 6,000 men) have a coronary artery disease diagnosis at a median-sized VA medical center (“facility”) (Source: VHA Women’s Health Evaluation Initiative, Women’s Health Services, Patient Care Services). To recruit enough women with coronary artery disease who meet all other study entry criteria and agree to participate, an investigator typically would need to reach out to women at multiple facilities. However, conducting multi-site research at geographically dispersed locations is challenging. In response, in June 2010, VA Health Services Research & Development Service (HSR&D) funded the VA Women’s Health Research Network, composed of the VA Women’s Health Research Consortium and the VA Women’s Health Practice-Based Research Network (WH-PBRN).7 (For contact information, see: http://www.hsrd.research.va.gov/for_researchers/womens_health/.) The focus of this paper is the WH-PBRN, designed to provide research infrastructure in support of multi-site women’s health research through a network of partnered VHA facilities. The WH-PBRN builds upon a tradition of non-VA PBRNs.8 By collaborating across practice settings, PBRNs make it feasible to recruit from a larger pool of prospective study participants, which is critical for VA women’s health research. However, they also do much more. Because PBRNs are inherently clinician-centric, they “draw on the experience and insight of practicing clinicians to identify and frame research questions whose answers can improve…practice,”9 they establish effectiveness of treatments and delivery systems when applied to real-world practices, and they provide a “laboratory” for testing health care innovations.10 While VA has existing infrastructure for multi-site research in its Cooperative Studies Program (CSP), only the WH-PBRN specializes in multi-site women’s health research and recruitment of women to multi-site, practice-based research studies. The WH-PBRN is thus able to add value because it fosters a community of researchers and clinicians with a special commitment to women Veterans and expertise about emerging areas in VA women’s health clinical practice that require research attention. Front-line women’s health clinicians on the WH-PBRN team are also expected to have greater credibility when interfacing with a patient population that may feel marginalized11 or that may have trust issues related to prior trauma.12 The WH-PBRN team works out the logistics of running research in the local clinic setting, streamlining recruitment of women and addressing the complexities of navigating clinic-based research with women Veterans. In addition, the WH-PBRN Coordinating Center in Palo Alto has been accumulating best practices for multi-site women’s health research in VA, and thus is able to help researchers with approaches to multi-site project management, multi-site research administration, and practice-based research in VA clinics that care for women Veterans. Thus, the WH-PBRN is well positioned to accelerate women’s health research in VA. This paper describes two overlapping phases of development of the WH-PBRN: Phase 1, designing the core infrastructure; and Phase 2, building the network. We conclude with challenges and opportunities on the horizon. Phase 1: Designing the WH-PBRN’s Core Infrastructure Here we describe how the WH-PBRN operationalizes core infrastructure elements: mission, clinical practices, staff and governance, and communication.9 Mission The mission of the VA Women’s Health Research Network (the combined WH-PBRN/Consortium) is to promote, support, and disseminate practice-based research and quality improvement initiatives designed to identify and develop evidence-based approaches that improve the health and health care of women Veterans. To achieve this, it fosters collaboration among a community of researchers and clinicians across VHA and promotes a culture of continual organizational learning (Table 1). Table 1 Design of VA Women’s Health Practice-Based Research Network (WH-PBRN) Core Infrastructure The WH-PBRN promotes women’s health research through various strategies. It outreaches directly to investigators, and enlists the support of VA research leadership to emphasize VA’s requirement to include women in research13 to grant applicants and reviewers. It profits from its tight affiliation with the Consortium, which generates a critical mass of VHA women’s health investigators and which fosters a research pipeline leading toward the WH-PBRN. The WH-PBRN also supports studies during the grant preparation phase and after grant funding, by providing guidance on management and administration of a multi-site, women’s health practice-based study, and by ensuring ongoing maintenance of the network. While Principal Investigators are responsible for all aspects of study leadership (distinguishing the WH-PBRN from VA Cooperative Studies Program, which is designed and staffed to contribute to the actual conduct of major multi-site studies), an investigator can purchase supplemental services from the WH-PBRN Coordinating Center or from the sites to conduct specific study tasks. Site Leads at facilities selected for a study can serve as Site Investigator (to complete local research regulatory processes, to recruit local study participants from clinic settings already primed for engagement in WH-PBRN activities, and/or to conduct local study procedures), or can connect the study Principal Investigator with another appropriate local Site Investigator. Budgets for such study-specific roles are determined during the grant preparation process. When a WH-PBRN study is completed, the Consortium takes the lead in disseminating findings, with support from the WH-PBRN. In particular, the WH-PBRN sites form a natural dissemination network.