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In 2001, community health center (CHC) leaders in Oregon established an organization to facilitate the integration of health information technology, including a shared electronic health record (EHR), into safety net clinics. The Oregon Community Health Information Network (shortened to OCHIN as other states joined) became a CHC information technology hub, supporting a network-wide EHR with one master patient index, now linked across >40 safety net organizations serving >900,000 patients with nearly 8,000,000 distinct CHC visits. Recognizing the potential of OCHIN’s multi-clinic network and comprehensive EHR database for conducting safety net-based research, OCHIN leaders and local researchers formed the Safety Net West practice-based research network (PBRN). The Safety Net West “community-based laboratory,” based at OCHIN, is positioned to become an important resource for many studies including: evaluation of the real-time impact of health care reform on uninsured populations; development of new models of primary care delivery; dissemination and translation of interventions from other EHR-based systems (e.g., Kaiser Permanente) into the community health setting; and analyses of factors influencing disparities in health and health care access. We describe the founding of Safety Net West, its infrastructure development, current projects, and the future goals of this community-based PBRN with a common EHR.
Ten years ago, safety net clinic leaders in Oregon established a community-based organization to implement and support a common electronic health record (EHR) system. This coalition, called the Oregon Community Health Information Network and shortened to OCHIN, Inc. as other states joined, became an information technology hub to a large network of community health centers (CHCs). Recognizing the potential for conducting safety net research using OCHIN’s multi-clinic network and EHR database; OCHIN staff, clinicians, and local researchers formed the Safety Net West Practice Based Research Network (PBRN). With OCHIN providing the PBRN’s administrative home, Safety Net West began developing a research agenda that addressed the interests of its safety net partners and capitalized on OCHIN’s data resources. Safety Net West is unique because of its EHR data linked across safety net clinics, and also because it is housed in a non-profit community organization rather than an academic research center. We describe the founding of Safety Net West, its infrastructure development, current projects, and future goals.
In 2001, OCHIN was created to facilitate the adoption of state-of-the-art electronic health records in safety net clinics and, thus, to improve the quality of care delivered in those clinics. OCHIN received support from the U.S. Department of Health and Human Services’ Health Resources and Services Administration (HRSA), and is both a HRSA-designated Health Center-Controlled Network and a federally-designated Organized Health Care Arrangement. As a non-profit corporation, OCHIN is governed by a volunteer board of directors, most of whom represent its member clinics; the rest are community health leaders. OCHIN’s mission is to pioneer the use of health information technology (HIT) in caring for the medically underserved.
With the aid of HRSA grants and local foundations, OCHIN’s coalition of Oregon-based CHCs and other safety net organizations pooled their purchasing power to install a centrally hosted EHR. This collective group believed that providing quality HIT to the most vulnerable and underserved patients was not only the right thing to do but was also financially prudent. For these reasons, they chose to partner with Epic©, a leader HIT. The OCHIN Epic© EHR is linked across all member clinic sites—a fully integrated electronic health information exchange system in which each patient has a single medical record. OCHIN’s customized EHR facilitates input and use of patient information at the point of care; interfaces enable the EHR to access external information (e.g., labs reports, imaging results, insurance eligibility). It is also possible to make reliable linkages between OCHIN EHR and state Medicaid data.1, 2 Decision support tools facilitate data aggregation, enabling clinicians’ to manage patients at the individual, panel, and clinic level. OCHIN’s dataset also provides researchers with population-level information on primary care delivery in vulnerable safety net clinic populations, including among people who are uninsured. Today, OCHIN includes over 40 member organizations serving more than 900,000 unique patients with nearly 8,000,000 distinct visits since 2001 (Table 1). To our knowledge, this is one of the richest community health center-based EHR data sources in the country.
The combination of factors—a multi-state network of safety net clinics, an EHR with rich data linked across the network, and support from OCHIN’s leadership—provided momentum for developing capacity to improve care quality in the safety net by optimizing practice through research. To that end, OCHIN began collaborating with two local academic researcher centers: Center for Health Research (CHR) at Kaiser Permanente Northwest, and Oregon Health & Science University (OHSU). In 2005–2006, CHR and OCHIN developed a “Guide to Conducting Research in the OCHIN Practice Management Data.”3 Next, two OCHIN member organizations partnered with CHR investigators to develop an obesity intervention for Latino children. These first projects illustrated the feasibility and potential benefits of OCHIN-based research and piloted the development of the contractual agreements needed to facilitate such research.
OCHIN’s board, led by Dr. John Saultz, chair of OHSU’s Department of Family Medicine (DFM), supported the establishment of the Safety Net West PBRN. Two of the four OHSU DFM health centers are OCHIN members who were among the first to adopt and implement the OCHIN electronic health record. The Community Engagement program of the Oregon Clinical and Translational Research Institute (OCTRI), an OHSU-CHR partnership funded by a Clinical and Translational Science Award, supported a part-time Safety Net West Director from 2007–2010. The PBRN, registered with the Agency for Healthcare Research and Quality in 2007, was housed at OCHIN to maximize its independence and focus on community-based research. Its mission is to encourage research with potential to directly benefit safety net patients, to develop and improve OCHIN’s data resources for research purposes, to partner with interested researchers, and to translate research findings into practice. Safety Net West includes members from all OCHIN-affiliated clinics; coordinates with OCHIN’s Clinical Oversight Group, a workgroup of OCHIN medical directors and clinicians that directs the content and structure of OCHIN’s EHR; and OCHIN’s Data Stewardship Committee, charged with ensuring the appropriate use of OCHIN data.
Several factors facilitated the successful creation of the Safety Net West PBRN. In addition to the synergy between strong leadership, the unique patient population, and the linked EHR, OCHIN leaders had a vision that extended beyond supporting the delivery of clinical care in safety net settings. There was interest in developing resources to improve practice and to influence policy. As a health center-controlled network, the organization also developed early processes that enabled representation and voice from all members and encouraged collaborative decision-making.
Similar to barriers encountered by most PBRNs, there was strong interest in research among OCHIN members but limited expertise and money. Most affiliated clinics had little or no infrastructure to support or to engage in research. Further, while their patient population is unique and diverse, clinics had already allocated all available resources to meet the many competing demands of an underserved patient population, and there was no room for adding new activities. In fact, some members expressed concerns or skepticism about research as a distraction or impediment to planned quality improvement efforts. Other clinics have been more supportive of studies that focus only on data with no increased demands on clinic workload. The use OCHIN’s unique and unprecedented data resources for these types of studies has required the development of polices to address who owns the data, what are proper uses of the data, and how best to secure and share the data.
Recognizing the need for research infrastructure, OCHIN, CHR, and OHSU collaborated to obtain two development grants made available through the 2009 American Recovery and Reinvestment Act. The first, an RC4 from the National Library of Medicine, “Collaborative Research Efforts Aimed at Translating Evidence and building Community Capacity,” is designed to (1) strengthen the capacity of the Safety Net West “community PBRN laboratory,”(2) engage OCHIN’s members in formulating and conducting research,4, 5 and (3) facilitate translating research results to improve the health of disadvantaged populations. The second grant, “Building Research Infrastructure to Develop and Generate Comparative Effectiveness Studies,” made Safety Net West a research node in HRSA’s national Community Health Applied Research Network (CHARN). It was designed to advance Safety Net West’s ability to conduct comparative effectiveness research (CER). These projects will further develop Safety Net West’s technical and personnel infrastructure.
In 2009, Safety Net West members collaborated on a pilot project to use OCHIN’s data in population-based research6 and to validate linkages between OCHIN’s care utilization data and Medicaid claims.1, 2 Concurrent technical infrastructure developments aim to validate the quality of EHR data through comparisons with manual chart review, and to ensure that valid aggregated data is easily accessible for researchers in de-identified formats. In addition, bi-directional data sharing capacity (e.g., pharmacy and immunization data) and analysis of EHR free text are being developed.
The research team at Safety Net West includes an executive director, operations director, project manager, research coordinator, information architect, and two research analysts. Team members from OCHIN and OHSU are paired with the goal of fostering collaboration. The team coordinates and supports the Safety Net West steering committee, which works to support a transfer of research expertise between academic researchers, OCHIN staff, and CHC partners. Through this partnership, the Safety Net West team has gained knowledge about federal research compliance, contracting, and business practices; academic researchers have learned about OCHIN’s data and the CHC practice environment, communities, and patient populations; and CHC partners have learned about framing research questions and testing hypotheses using their own data.
Table 2 summarizes all Safety Net West research projects since 2006, which include data-only studies, translational research, text analysis, Comparative Effectiveness Research (CER), and research infrastructure development. Safety Net West emphasizes both ‘bottom-up’ and ‘top-down’ research ideas—studies conceived by OCHIN practitioners that are brought to researchers to develop, and ideas generated by academic researchers that are brought to practitioners for feedback and direction. One ‘bottom-up’ study seeks to translate a quality improvement initiative from an integrated care setting into 12 OCHIN clinics; the idea came from an OCHIN clinician, funding acquisition was led by a CHR researcher, and the study is being implemented collaboratively. One ‘top-down’ study is developing methods for evaluating asthma care using data extracted from free-text analysis of clinic notes in OCHIN’s EHR. This idea came from a CHR researcher and was embraced by Safety Net West as an innovative approach to using OCHIN’s data to improve care quality.
The Safety Net West “community-based laboratory,” based at OCHIN, is positioned to become an important resource for many studies including: evaluation of the real-time impact of health care reform on uninsured populations; development of new models of primary care delivery; dissemination and translation of interventions from other EHR-based systems (e.g., Kaiser Permanente) into the community health setting; and analyses of factors influencing disparities in health and health care access.
As Safety Net West matures, we will strategically develop its governance and build appropriate operations mechanisms. We will maintain the core steering committee and have established three subcommittees to support the steering committee’s work, including (1) Data and Research Development; (2) Communications and Community Engagement; (3) Policies and Governance. These committees will oversee continued network development and undertake tasks related to: building policies for data use and sharing; developing capabilities for data extraction, quality improvement, linkages, and sharing; disseminating information and strengthening partnerships with community stakeholders; refining organizational infrastructure and relationships between PBRN members; and developing research priorities and projects. Through these processes, we hope to build a robust collection of secondary data that will be available to research collaborators from across the country who have not previously had access to electronic health care services utilization data on underserved and uninsured populations.
Many Safety Net West member clinics are participating in cutting-edge practice transformations that go beyond demonstrating HIT’s potential in facilitating primary care improvements. Partnering with OCHIN, researchers, and payers, many practices are organizing themselves as Patient-Centered Medical Homes.7–12 We envision a synergy between practice transformation and research activities, strengthened by a “learner’s bridge” that provides opportunities for community partners to learn the skills for implementing and evaluating practice interventions. The Safety Net West PBRN will thus serve as a laboratory where students, clinicians, and researchers can collaborate and learn from each other. While there is significant value in quality improvement activities, partnering with researchers who can evaluate and disseminate findings increases the likelihood that successful interventions can be replicated and sustained. This type of partnership ensures that meaningful activities will be documented and will contribute to the growing fund of knowledge about evidence-based, best practices in primary care.13–19 Further, engaging learners in this partnership further strengthens the benefit for spread of innovation and sustainable future change.
Network partnerships and sustainability must be built together. We believe that sustainability will be attainable as our PBRN matures, expands, and proves its worth to a diverse group of stakeholders. To that end, we aim to strengthen key partnerships between Safety Net West, OCHIN, community health centers, researchers, policy-makers, and funders. It is these partnerships, creative ideas, and data resources, plus a track record of contributions to practice transformation and ultimately, the improvement of our populations’ health that will determine our success.
We are grateful to OCHIN and all members of the Safety Net West Practice-based Research Network. We also wish to thank Deborah J. Cohen, PhD, for her expert comments on early manuscript drafts.
Funding Sources: This study was supported by grant number UB2HA20235 from the Health Resources and Services Administration (HRSA), grant number 1RC4LM010852 from the National Institutes of Health (NIH) National Library of Medicine, the Oregon Clinical and Translational Research Institute (OCTRI), grant number UL1 RR024140 01 from the National Center for Research Resources (NCRR), a component of the NIH and NIH Roadmap for Medical Research, the Kaiser Permanente Northwest Center for Health Research (CHR), and the OHSU Department of Family Medicine.
Disclosures/Conflict of Interest: We have no financial conflicts of interest to disclose.