On March 23, 2018, when H.R. 1625, the Consolidated Appropriations Act of 2018, became law (Frelinghuysen, 2018), Congress directed and authorized the Agency for Healthcare Research and Quality (AHRQ) to contract with an independent entity for a study on health services research (HSR) and primary care research (PCR) supported by federal agencies. Per this congressional directive, AHRQ contracted with the RAND Corporation to conduct this assessment, titled the “Health Services and Primary Care Research Study,” beginning on September 19, 2018.
The goal of the study was to provide an independent assessment of the breadth, scope, and impact of HSR and PCR supported by the U.S. Department of Health and Human Services’ (HHS’s) 11 operating divisions and the U.S. Department of Veterans Affairs (VA) since fiscal year (FY) 2012. In support of this goal, the study was to identify research gaps and propose recommendations to AHRQ for maximizing the outcomes, value, and impact of HSR and PCR investments during the next five to 20 years and beyond, including strategies for better coordination and potential consolidation of research agendas. This report presents the final comprehensive results and recommendations of the study.
This study offered an important opportunity to identify the strengths and contributions of the many HHS agencies and the VA to the federal HSR and PCR enterprise, and to gain insights on how to better align these research programs to serve the needs of the evolving U.S. health care system. The results of the project are intended to provide a balanced, evidence-based understanding of federally funded HSR and PCR that policymakers can use in shaping the future of the federal HSR and PCR enterprise.
The Importance of HSR and PCR
Since its emergence as an independent field of study in the 1960s, HSR has helped establish an evidence base to support decisionmaking and improvements in the quality, safety, effectiveness, and efficiency of health care in the United States (National Academies of Medicine, 2018). HSR has provided insights into such topics as health promotion and disease prevention, the effectiveness of new health care technologies and other innovations, the quality of health care services, and outcomes associated with clinical practice—including primary care. HSR findings have been used to improve the design of health care benefits, inform health care policy, and help providers and patients make better decisions about health care.
PCR has also emerged as an important field in its own right, addressing a central component of health care. While research on health services in the context of primary care overlaps PCR and HSR, PCR also more broadly includes clinical research on conditions typically addressed in the primary care setting and exhibits distinct features related to the unique role of primary care in the health care system. The Council of Academic Family Medicine and other organizations have delineated these key characteristics of PCR (Wittenberg, undated; Peek, Cohen, and deGruy, 2014). The results and application of PCR are likely to touch the lives of all Americans, as most people receive the majority of their health care in primary care practices. PCR comprehensively studies the whole person, acknowledging that patients often face multiple diseases and live in the context of their family and community. PCR studies common, important conditions that are often not treated in hospitals or specialty clinics; and provides evidence that is unique to, and critical for, the delivery of primary care. As a result, PCR is essential to support efficient and coordinated delivery needed for high-quality primary care.
The Need for an Assessment of HSR and PCR
Consistent with this broad acknowledgment of the many contributions of HSR and PCR to improve health care, there has been growing recognition among federal agencies and other stakeholders of the need to better understand the impact of HSR and PCR and to prioritize potential future directions of research. The ongoing need for HSR and PCR studies is clear: The U.S. health system is complex and faces many challenges—including high costs and disparities in access and quality of care—which require a foundation of evidence-based research to be effectively addressed. Further, advances in technology, new data resources and analytical tools, and new key areas in health research—such as the social determinants of health—have opened many opportunities to enhance the impact of HSR and PCR (NAM, 2018). At the same time, constraints on federal funding, as well as the many competing topics vying for support, mean that investments in research need to be viewed strategically to maximize their value and limit potential duplication among studies. In a recent examination of trends in funding for HSR, Simpson et al. noted that “the future size, scope, and focus of federal support for HSR remain uncertain given recent trends including continued pressures on federal discretionary spending” (2018). They suggested that the HSR community might benefit from stepping back to assess the “changing nature, purpose and impact” of HSR and to revisit existing priorities.
A 2018 conference, sponsored by the National Academy of Medicine, brought HSR leaders and other stakeholders together to explore the evolution and past accomplishments of the HSR field and identify potential directions for future research (NAM, 2018). Conference participants called for “a set of activities required to transform the field” (NAM, pp. 4–5), including an expanded vision of HSR, a taxonomy of issues and priorities for action, tools and insights to use in effecting change, the development of data infrastructure, and the creation of a “working network” of stakeholders—including patients—in research.
While these and other efforts have helped to scope the future of HSR, there has been less investment in planning for the future of PCR, despite the importance of primary care to improve Americans’ health (Chien et al., undated). Given that some have called primary care “too important to fail” (Meyers and Clancy, 2009), the development of a research agenda that effectively supports the goals of primary care is of critical importance. The current study attempts to build on efforts to date examining future directions for HSR and PCR.
Study Research Questions and Approach
Based on the goal of the study described above, the RAND team worked with AHRQ to develop a set of five key research questions shown in Box 1.1.
Box 1.1. Study Research Questions
To answer these research questions, the RAND team utilized three primary data collection methods, as specified in AHRQ’s statement of work for the study:
- Technical expert panels (TEPs) constituted of leaders in the fields of HSR and PCR: The purpose of the TEP meetings was to convene individuals with expertise in research, policy, and the use of HSR and PCR to provide group-facilitated expert perspectives on the study’s key research questions, as well as feedback on methods and preliminary results from other tasks.
- Key informant interviews with leaders from multiple stakeholder groups in HSR and PCR: The interviews provided in-depth input from a wide range of stakeholders to inform assessment topics and results from other study tasks. Interview participants consisted of experts from five stakeholder groups: researchers focusing on HSR and PCR, health care delivery system leaders, other users of HSR and PCR (e.g., consumers, payers/purchasers, insurers), state-level health care policy and decisionmakers, and federal HSR and PCR leaders.
- Environmental scan and portfolio analysis of federally funded HSR and PCR extramural research projects from October 1, 2011, through September 30, 2018: The scan provided an overall picture of the breadth of federally funded HSR and PCR during this period, including information regarding the research projects funded by different agencies across research domains and topical subcategories.
The RAND team qualitatively analyzed the TEP and interview transcripts to identify themes discussed by study participants on each of the research questions. Environmental scan data on federally funded research projects were analyzed with manual coding and machine learning methods to provide a quantitative assessment of the breadth and focus of federal agency research portfolios in HSR and PCR. Based on the results of the qualitative and quantitative analyses, and suggestions of the TEP and interview study participants, the RAND team developed strategic recommendations for AHRQ and others to consider in maximizing the outcomes and impact of future investments in federally funded HSR and PCR.
Organization of This Report
The remainder of this report is organized as follows:
- Chapter 2 describes the methods used in this study.
- Chapter 3 examines the breadth and focus areas of federally funded HSR and PCR.
- Chapter 4 centers on overlap and coordination among agencies that funded HSR and PCR.
- Chapter 5 discusses different types of impact, as well as challenges to assessing and achieving the impact of federally funded HSR and PCR.
- Chapter 6 describes key gaps in HSR and PCR and a framework for prioritizing gaps.
- Chapter 7 presents our conclusions and recommendations for improving the outcomes, value, and impact of federally funded HSR and PCR.
The report also contains four appendixes, which provide supplementary results and detailed information on the methods for the environmental scan and portfolio analysis (Appendixes A and B), descriptions of agency research portfolios in HSR and PCR (Appendix C), and additional research gaps identified by study participants (Appendix D).