Using Health Information Technology to Bring Social Determinants of Health into Primary Care: A Conceptual Framework to Guide Research.

Several recent national initiatives have called for increased efforts to integrate social determinants of health (SDH) into health care settings using health information technology (HIT). However, there is limited evidence to guide the implementation of these recommendations in practice. Research is needed to understand what SDH information is most important to collect, how SDH information can be used to inform clinical care and referrals, and ultimately, whether and how integrating SDH screening and action into primary care affects individual and population health. We recently proposed a conceptual framework to illustrate how HIT can be used to bring SDH information into primary care. In this paper, we describe how we are putting this conceptual model into practice within the OCHIN network of community health centers by highlighting examples of ongoing research, identifying knowledge gaps, and outlining a roadmap of future research to move the field forward.

Partnering With Patients, Families, and Communities.

BACKGROUND AND OBJECTIVES: Collaborating with patients, families, and communities is a core principle of family medicine. However, the health care system in the United States has grown increasingly complex, fragmented, and difficult to navigate. This system, focused on disease-specific care delivered by specialists, often treats patients as the objects of care rather than as partners in care. Family Medicine for America's Health (FMAHealth) offers an opportunity to challenge the status quo in collaborative care through enhanced patient outreach and community engagement. With a central focus on improving health and achieving the Triple Aim, the FMAHealth initiative recognizes that successful transformation of the US health care system requires collaborative partnerships between clinicians, patients, families, and communities. Patient and population-level outcomes can be improved through shared decision making; application of new technology; and authentic partnerships with patient, families, and communities. Broader collaboration in practice transformation, research, and policymaking can lead to identification of common goals and mutually embraced transformation. The discipline of family medicine aspires to encourage patients, families, and communities to demand change as consumers, as citizens, and as voters.

Practice-based research networks (PBRNs) are promising laboratories for conducting dissemination and implementation research.

Dissemination and implementation science addresses the application of research findings in varied health care settings. Despite the potential benefit of dissemination and implementation work to primary care, ideal laboratories for this science have been elusive. Practice-based research networks (PBRNs) have a long history of conducting research in community clinical settings, demonstrating an approach that could be used to execute multiple research projects over time in broad and varied settings. PBRNs also are uniquely structured and increasingly involved in pragmatic trials, a research design central to dissemination and implementation science. We argue that PBRNs and dissemination and implementation scientists are ideally suited to work together and that the collaboration of these 2 groups will yield great value for the future of primary care and the delivery of evidence-based health care.

Using geographic information systems (GIS) to identify communities in need of health insurance outreach: An OCHIN practice-based research network (PBRN) report.

BACKGROUND: Our practice-based research network (PBRN) is conducting an outreach intervention to increase health insurance coverage for patients seen in the network. To assist with outreach site selection, we sought an understandable way to use electronic health record (EHR) data to locate uninsured patients. METHODS: Health insurance information was displayed within a web-based mapping platform to demonstrate the feasibility of using geographic information systems (GIS) to visualize EHR data. This study used EHR data from 52 clinics in the OCHIN PBRN. We included cross-sectional coverage data for patients aged 0 to 64 years with at least 1 visit to a study clinic during 2011 (n = 228,284). RESULTS: Our PBRN was successful in using GIS to identify intervention sites. Through use of the maps, we found geographic variation in insurance rates of patients seeking care in OCHIN PBRN clinics. Insurance rates also varied by age: The percentage of adults without insurance ranged from 13.2% to 86.8%; rates of children lacking insurance ranged from 1.1% to 71.7%. GIS also showed some areas of households with median incomes that had low insurance rates. DISCUSSION: EHR data can be imported into a web-based GIS mapping tool to visualize patient information. Using EHR data, we were able to observe smaller areas than could be seen using only publicly available data. Using this information, we identified appropriate OCHIN PBRN clinics for dissemination of an EHR-based insurance outreach intervention. GIS could also be used by clinics to visualize other patient-level characteristics to target clinic outreach efforts or interventions.

Use of qualitative methods and user-centered design to develop customized health information technology tools within federally qualified health centers to keep children insured.

Lack of health insurance negatively impacts children's health. Despite federal initiatives to expand children's coverage and accelerate state outreach efforts, millions of US children remain uninsured or experience frequent gaps in coverage. Most current efforts to enroll and retain eligible children in public insurance programs take place outside of the health care system. This study is a partnership between patients' families, medical informaticists, federally qualified health center (FQHC) staff, and researchers to build and test information technology tools to help FQHCs reach uninsured children and those at risk for losing coverage.

"Not a kidney or a lung:" research challenges in a network of safety net clinics.

BACKGROUND AND OBJECTIVES: To gain a better understanding of the facilitators and barriers to creating a practice-based research network (PBRN) of safety net clinics, we conducted a qualitative study within our network of safety net health centers. METHODS: Utilizing snowball sampling, we conducted interviews with 19 of our founding stakeholders and analyzed these interviews to draw out common themes. RESULTS: The results showed four barriers to research in our network: lack of research generated from clinician questions, lack of appropriate funding, lack of clinician time, and lack of infrastructure. We discuss these results and suggest that inadequate funding for practice-based research, particularly in the health care safety net, is a unifying theme of these four barriers. CONCLUSIONS: Our results suggest that the national funding strategy for research relevant to underserved populations and all of primary care must undergo a fundamental shift. We discuss the features of possible models to meet this need.

Diabetes care quality is highly correlated with patient panel characteristics.

INTRODUCTION: Health care reimbursement is increasingly based on quality. Little is known about how clinic-level patient characteristics affect quality, particularly in community health centers (CHCs). METHODS: Using data from electronic health records for 4019 diabetic patients from 23 primary care CHCs in the OCHIN practice-based research network, we calculated correlations between a clinic's patient panel characteristics and rates of delivery of diabetes preventive services in 2007. Using regression models, we estimated the proportion of variability in clinics' preventive services rates associated with the variability in the clinics' patient panel characteristics. We also explored whether clinics' performance rates were affected by how patient panel denominators were defined. RESULTS: Clinic rates of hemoglobin testing, influenza immunizations, and lipid screening were positively associated with the percentage of patients with continuous health insurance coverage and negatively associated with the percentage of uninsured patients. Microalbumin screening rates were positively associated with the percentage of racial minorities in a clinic's panel. Associations remained consistent with different panel denominators. CONCLUSIONS: Clinic variability in delivery rates of preventive services correlates with differences in clinics' patient panel characteristics, particularly the percentage of patients with continuous insurance coverage. Quality scores that do not account for these differences could create disincentives to clinics providing diabetes care for vulnerable patients.

Building research infrastructure in community health centers: a Community Health Applied Research Network (CHARN) report.

This article introduces the Community Health Applied Research Network (CHARN), a practice-based research network of community health centers (CHCs). Established by the Health Resources and Services Administration in 2010, CHARN is a network of 4 community research nodes, each with multiple affiliated CHCs and an academic center. The four nodes (18 individual CHCs and 4 academic partners in 9 states) are supported by a data coordinating center. Here we provide case studies detailing how CHARN is building research infrastructure and capacity in CHCs, with a particular focus on how community practice-academic partnerships were facilitated by the CHARN structure. The examples provided by the CHARN nodes include many of the building blocks of research capacity: communication capacity and "matchmaking" between providers and researchers; technology transfer; research methods tailored to community practice settings; and community institutional review board infrastructure to enable community oversight. We draw lessons learned from these case studies that we hope will serve as examples for other networks, with special relevance for community-based networks seeking to build research infrastructure in primary care settings.

Lessons learned and challenges ahead: report from the OCHIN Safety Net West practice-based research network (PBRN).

INTRODUCTION: We recently completed a strategic planning process to better understand the development of our 5-year-old practice-based research network (PBRN) and to identify gaps between our original vision and current progress. Although many of our experiences are not new to the PBRN community, our reflections may be valuable for those developing or reshaping PBRNs in a changing health care environment. LESSONS LEARNED: We learned about the importance of (1) shared vision and commitment to a unique patient population; (2) strong leadership, mentorship, and collaboration; (3) creative approaches to engaging busy clinicians and bridging the worlds of academia and community practice; and (4) harnessing data from electronic health records and navigating processes related to data protection, sharing, and ownership. CHALLENGES AHEAD: We must emphasize research that is timely, relevant, and integrated into practice. One model supporting this goal involves a broader partnership than was initially envisioned for our PBRN--one that includes clinicians, researchers, information architects, and quality improvement experts partnering to develop an innovation center. This center could facilitate development of relevant research questions while also addressing "quick-turnaround" needs. CONCLUSIONS: Gaps remain between our PBRN's initial vision and current reality. Closing these gaps may require future creativity in building partnerships and finding nontraditional funding sources.

Developing a network of community health centers with a common electronic health record: description of the Safety Net West Practice-based Research Network (SNW-PBRN).

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 800,000 distinct CHC visits. Recognizing the potential of OCHIN's multiclinic 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.

Randomized controlled trial of a collaborative care intervention to manage cancer-related symptoms: lessons learned.

BACKGROUND: Collaborative care interventions to treat depression have begun to be tested in settings outside of primary care. However, few studies have expanded the collaborative care model to other settings and targeted comorbid physical symptoms of depression. PURPOSE: The aims of this report were to: (1) describe the design and methods of a trial testing the efficacy of a stepped collaborative care intervention designed to manage cancer-related symptoms and improve overall quality of life in patients diagnosed with hepatobiliary carcinoma; and (2) share the lessons learned during the design, implementation, and evaluation of the trial. METHODS: The trial was a phase III randomized controlled trial testing the efficacy of a stepped collaborative care intervention to reduce depression, pain, and fatigue in patients diagnosed with advanced cancer. The intervention was compared to an enhanced usual care arm. The primary outcomes included the Center for Epidemiological Studies-Depression scale, Brief Pain Inventory, and Functional Assessment of Cancer Therapy (FACT)-Fatigue, and the FACT-Hepatobiliary. Sociodemographic and disease-specific characteristics were recorded from the medical record; Natural Killer cells and cytokines that are associated with these symptoms and with disease progression were assayed from serum. RESULTS: and Discussion The issues addressed include: (1) development of collaborative care in the context of oncology (e.g., timing of the intervention, tailoring of the intervention, ethical issues regarding randomization of patients, and changes in medical treatment over the course of the study); (2) use of a website by chronically ill populations (e.g., design and access to the website, development of the website and intervention, ethical issues associated with website development, website usage, and unanticipated costs associated with website development); (3) evaluation of the efficacy of intervention (e.g., patient preferences, proxy raters, changes in medical treatment, and inclusion of biomarkers as endpoints); and (4) analyses and interpretation of the intervention (e.g., confounding factors, dose and active ingredients, and risks and benefits of collaborative care interventions in chronically ill patients). LIMITATIONS: The limitations to the study, although not fully realized at this time as the trial is ongoing, include: (1) heterogeneity of the diagnoses and treatments of participants; and (2) inclusion of caregivers as proxy raters but not as participants in the intervention. CONCLUSIONS: Collaborative care interventions to manage multiple symptoms in a tertiary cancer center are feasible. However, researchers designing and implementing interventions that are web-based, target multiple symptoms, and for oncology patients may benefit from previous experiences.

A prospective study of posttraumatic growth as assessed by self-report and family caregiver in the context of advanced cancer.

OBJECTIVE: The study of posttraumatic growth (PTG) has burgeoned over the last decade, particularly in the area of oncology. The aims of the study were to: (1) describe PTG in patients with hepatobiliary carcinoma, (2) examine agreement between the patient and caregiver measures of patient PTG, and (3) test the associations between PTG and other psychological factors and clinically relevant outcomes. METHODS: Two hundred and two patients with hepatobiliary carcinoma completed a battery of standardized questionnaires that measured PTG, depressive symptoms, optimism, expressed emotion, and quality of life (QOL). A subsample of family caregivers also completed ratings of patient PTG, using the Posttraumatic Growth Inventory (PTGI), as well as their own PTG. RESULTS: No significant increase in the patients' PTG was observed between diagnosis and 6-month follow-up with the exception of the Relating to Others subscale of the PTGI. PTG was not found to be associated with QOL or depressive symptoms. At diagnosis, the agreement between the patients' PTG and family caregivers' rating of patient PTG was found to be high (ICC=0.34-0.74, p=0.001-0.05). PTG was found to be significantly associated with optimism (r=0.20 p=0.02-0.05) and traumatic life events reported in the past 3 years, including recent losses (F(1, 52)=6.0, p=0.02) and severe physical injury (F(1, 52)=5.5, p=0.02). Caregivers reported PTG as a result of their loved one's diagnosis of cancer. CONCLUSION: Preliminary results suggest that PTG is relatively stable over the first 6 months after diagnosis and changes as a result of a diagnosis of cancer were reported, and possibly observed, by others. Family caregivers also experience PTG as a result of their loved one's diagnosis of advanced cancer.