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RESEARCH FOR A TWENTY-FIRST-CENTURY HEALTH SYSTEM

To pursue the priorities identified over the course of the meeting, the summary session discussion focused on approaches to strengthen the field as a transformational force for a twenty-first-century health system. “What would the headlines from 2025 look like if these deliberations had a successful outcome?” asked Jonathan Perlin, president of clinical services and chief medical officer at Health Corporation of America and moderator of the session. Would they be:

• Health policy is routinely driven by evidence on system performance;
• Data derived from the care experience provides a ubiquitous utility for learning and improvement;
• Health services research is the engine that drives continuous learning and improved decision-making;
• Health innovations are assessed in real-time; or
• Research on health services and systems performance spans both care and health?

ISSUE: CONCEPTS AND GOALS

Perlin noted the need for “a concept of operations for a twenty-first-century approach to health services research.” Such a concept may start with a research agenda, but it also includes how that agenda is used and which constituents are involved. It involves articulating a value proposition for each constituency, which, in turn, raises the question of the “financial ecology” that makes research possible. The interface between research infrastructure and practice application must be as seamless as possible.

With respect to developing a research agenda, and building on themes from the previous chapter, Andrew Bindman, professor of medicine, epidemiology, and biostatistics at the University of California, San Francisco, commented that the health services research community needs clearer goals—either a

shared goal or a limited set of goals. Its goals cannot be simply a description of what health services researchers do or how they do it. Rather, researchers need to be clear and specific in saying what they are applying themselves to do. A lack of clarity regarding goals and responsibilities is one reason why some in Congress ask if there is redundancy in the system, he pointed out. The leaders of public agencies are well positioned to observe, broker, and articulate the field’s goals.

Additionally, Bindman remarked that since, in a political process, focus and priorities are determined by the consensus of end users and stakeholders, the health services research community cannot be the only keepers of their shared goals. Instead, influential stakeholders need to share, support, and participate in achieving these goals. In particular, public investment can engage and organize private partnerships directed toward shared goals. On a related note, Lee Fleisher, professor of anesthesiology and medicine at the University of Pennsylvania Perelman School of Medicine, pointed out that breaking down silos is an interesting issue in a medical world of specialties. It is particularly interesting, he said, in the context of mental health and the ongoing opioid epidemic, where “the inability to get data even from our insurance companies around mental health issues is a huge stumbling block.” Great opportunities exist, but taking advantage of those opportunities requires getting all the stakeholders in a single room to talk with each other. Even greater opportunities would be available by taking advantage of the changes going on in the insurance industry and the retail industry that are changing the way people interact with these businesses. Fleisher raised the issue of how health services research should interface with chief executive officers and the overall architecture of the health system, including academic centers and community centers.

To ensure that the goals articulated as part of the research agenda are accomplished, many participants called for better coordination of the federal investment in the field. A growing number of funders, including AHRQ, PCORI, NIH, Center for Medicare & Medicaid Innovation, and the VA, have demonstrated “a marvelous spirit of curiosity in the field of health services research,” said Bindman. These entities cooperate and interact with one another, but they do not have a formal process to make decisions in an efficient and coherent manner. “This has left us vulnerable to questions of whether our approach is redundant and inefficient.” A common or collaborative governance/coordination structure could help to enhance alignment among agencies around a shared set of goals for the field of health services research. “A city the size of health services research needs a planning commission to sort out its investment and a growth strategy guided by its goals,” Bindman concluded. “The White House budget

has proposed some ways of reorganizing these investments . . . I see this as a symptom of leaving ourselves vulnerable to addressing fundamental questions about our shared goals and the best way to organize ourselves to achieve them. I think this meeting has helped us to start that conversation, but we have substantial work to do to give our field the infrastructure it needs. And judging by the White House policy, which has called for reorganizing AHRQ into NIH for two years in a row, the clock is ticking.”

In addition to improving coordination and governance among federal funders of health services research, Robert Phillips, from the American Board of Family Medicine, pointed out that health services research is being done in many buckets across private and public agencies. There is a need to improve coordination not just among federal agencies but also among federal agencies and private and non-profit organizations. If the field is spending $5 billion in total, could it get more value from that expenditure, Phillips asked.

Bindman also noted that the governance or coordination structure that is created should be informed by a set of metrics, plotted against time toward its goals, which will create a system of accountability and support communication within and outside of the community about what the field of health services research has accomplished. A low-level metric might be directed toward a specific problem, “but at some point we need to evolve past that and demonstrate real impact on a population level.” Public investments can help develop these metrics, collect the necessary information, report on the results over time, and make an evidence-based case for the return on investment. This can then help guide the amount of funding and whether it should grow over time. Shorter-term metrics may also be helpful in guiding policy decision-makers and other essential stakeholders contending with immediate challenges.

With respect to shared goals, participants called for a national conversation about the outcomes the health care system is working to achieve, and the proportion of health services research that should be focused on macro-level policy questions versus micro-level questions focused on individual health systems, hospitals, or clinics. Participants also supported the development of new models of funding and new research methods that allow for rapid cycle research to inform policy makers as well as for funding to support implementation science. In addition to rethinking funding models, another theme from the meeting was the incentives in academia, which focus on publication and promotion rather than on developing the evidence that is most important to end users. Considering ways to restructure these incentives to reward research that changes practices, even if only on a small scale, could promote greater interaction between evidence producers and evidence users and more impactful health services research.

The ability of the field to address research priorities and impact health care and policy and to leverage recent advances in data analytics, including predictive analytics and artificial intelligence, would be enhanced if health care and patient-generated data were routinely shared and leveraged to address problems within the health care system and community settings. Also key to progress on these goals is enhanced interaction among health system leaders, policy makers and health services researchers. However, as various participants noted, there are a number of cultural and policy barriers that prevent the sharing of data on a national level to support health services research, clinical research, and continuous learning. These include, for example, the growth of proprietary data, concerns about privacy protections, the lack of follow-through on commitments to share data, and the inability to integrate community and social determinants data with health care data.

On the data issue, Richard Besser of the Robert Wood Johnson Foundation (RWJF), underscored the importance of strategies to ensure linkage of health care data with community and social determinants data, such as housing, education, and transportation, observing that “if you are not able to include these issues in the datasets you are analyzing, you are going to be missing a critical barrier to health.” On a related note, participants discussed the need to maintain investments in nationally representative surveys, which also contain valuable data for addressing important health care and health policy questions. Addressing these barriers will require a sustained national effort that engages stakeholders from across the health care sector as well as from other sectors of society that have a direct impact on health such as housing, transportation, and education.

ISSUE: COMMUNICATING VALUE FOR PATIENTS AND SOCIETY

Ultimately, in order to demonstrate the importance of continued federal investment in health services research, numerous participants across both days of the symposium commented on the need for the field to better articulate its value in terms of improving health, health care, and health policy. Part of demonstrating value requires ensuring that the results and benefits of health services research are available to all potential end users. It also requires developing a communication strategy, which may include changing the name of the field so that it is more intuitive to end users, and improving the translation of results from health services research to drive changes in health care, communities, and federal and local policies.

On this point, Ellie Dehoney, vice president of public policy and programs at Research!America, argued that health services research needs to be described in compelling terms. For example: “If you don’t use it, our fiscal crisis is going to get worse, people are going to die, and neither of those things need to happen.” It should not be the fourth kind of research that is considered but the first, “because medical research makes no sense if it isn’t disseminated in a way that reaches every American and helps with their health.”

As stated by Perlin, “if that market isn’t calling, how do we strengthen the articulation of the value proposition and therefore strengthen the market?” Focusing on public investments in health services research, Phillips remarked that the relative growth in funding for health services research has not kept up with the growth in biomedical research funding. Yet, with respect to the gap between knowledge and delivery, the need for health services research is even more pressing than it has been in the past. To support the need for additional and continued federal support, the field needs to better communicate its value and develop a process for sharing results.

Building on this theme, Besser stated that “One of the things I found in my eight years [as health and medical editor] at ABC [News] is that, for most people in health and in science, communication is an afterthought.” However, from his perspective, the “work begins after the research is completed,” he added. A paper may provide evidence, but that evidence then needs to be turned into programs that lead to change in communities, “so that you are not writing that same paper five to ten years later because nothing has changed.” Though some progress has been made with this issue, a communication strategy could further improve understanding of the value proposition for health services research and make policy makers more aware of the field.

Bindman commented that, in order to demonstrate value, it is critical to ensure that the benefits of health services research are available to all and not just to the organizations and entities that have private resources to access those benefits. He also suggested that there ought to be separate funding mechanisms to support innovation, evaluation, and implementation within the field of health services research, as the appropriate funding mechanisms for these three areas of research are likely to be very different. Building on earlier themes from the conference, Bindman pointed out that implementation science, in particular, has lagged behind, in part because funding mechanisms used to determine internal validity are not necessarily suited for strategies to implement what works. Similarly, Fleisher commented that the field needs “to be more inventive about funding strategies to support implementation.” Accomplishing this requires thinking about the incentive

structure for new health services researchers needed to support implementation science. Traditional research that is published in the New England Journal of Medicine and JAMA is the usual way to move up the academic ladder, but implementation science, despite interest among health system leaders and young researchers, is more difficult to get funded and published in highly visible journals, said Fleisher.

In addition to novel funding mechanisms, Phillips remarked that, in order to inform change in care delivery, the field must develop new methods of research, find value in current research—including negative findings—and share successes and failures more widely and thoroughly than is done today. Clear needs exist for more high-risk funding, more innovation, more translation, greater speed, greater pragmatism, and the integration of social services into health services research.

Addressing the particular importance of positioning health services research as a more routine and integral component of the delivery process, Perlin raised a number of additional questions for consideration, including:

• How can research be best integrated into care?
• What sort of research can be supported by health systems, and what do health systems and providers need to learn?
• Are there vehicles to make system-specific learning transportable, scalable, and networked so that the learning process can be accelerated?
• What are the roles of professionals, professional organizations, and organizations outside of health care systems and academic institutions in supporting this work?
• How can the best research investments be identified?
• What are the synergies that enhance value between federal investment, private investment, and the work that health systems are doing?
• How can health services research move beyond the walls of the institution and incorporate the ubiquitous determinants of health?

An overriding theme from this session was that the field of health services research needs to determine how to effectively engage both across the field and with end users to break down silos and demonstrate value. Conversations with end users, including Congressional representatives, need to describe the problems facing the health care system and how health services research can and is helping to solve those problems. As suggested by Fleisher, there is also a need to determine how to most appropriately engage patients to inform future priorities and goals for the field of health services research.

ISSUE: MOBILIZING FOR TRANSFORMATION

The field of health services research has led to important insights and advances in health care policy and health care quality, delivery, and efficiency, ultimately improving patient care and outcomes. However, many outstanding issues remain. Over the course of the symposium, participants discussed many health and health care challenges and opportunities for which the evidence need is pressing, including those related to: engaging the social determinants of health; addressing overburden and burnout among clinicians; determining effective alternative payment models; developing approaches for integrating genetics and related knowledge about individual patient variation into the care process; engineering health care systems so that they result in the most effective care for patients; understanding how to better address the needs of high-need, high-cost patients; building the capacity to take advantage of technologies for patient- and family-activated home and remote site health and health care services.

While raising macro-level issues such as strategic coordination of research agendas and improving the national infrastructure for a fully interoperable health information system, participants emphasized various emerging strategic field focus priorities for the next decade, including:

• structured approaches to assessing, applying, and adapting the delivery system to insights and tools related to precision medicine;
• system strategies for ensuring patient safety in the face of an increasingly complex diagnostic and treatment environment;
• embedding health services research skills and tools into care delivery as a basic component of a continuously learning health system;
• establishing reliable data from the routine care experience as a secure utility enhancing evidence development, predictive modeling, and continuous care improvement;
• incorporating necessary demographic, environmental, social, and community data as an integral component of that data utility;
• devising and demonstrating the impact of innovative payment and care delivery models for improving system performance and population health;
• identification and application of quality assessment metrics that are most reliable at gauging system-wide performance in delivering care and improving health;
• positioning patient and family involvement, interests, priorities, and data as a central resource for care design and assessment;

• developing the full and effective use of artificial intelligence and machine learning as transformational resources for knowledge development and services improvement; and
• effective approaches to translating and scaling research insights, including effective expression of the consequences of inaction.

The range of the issues is so substantial that relying on spontaneous and sometimes serendipitous response capacity in the field will not meet the need. Rather, a deliberate and coordinated set of activities is required to prepare—to transform—the field. In effect, participants individually and collectively presented a call to action for the field to mobilize sustained initiatives to:

• expand the vision to account for the full range of health system forces in play;
• develop a robust taxonomy of the issue and leverage priorities for action;
• identify the tools and strategies—available and emerging—to refine and deploy in the change process;
• steward the societal-wide advancement of a culture of continuous learning and sharing throughout the system;
• foster the development of the data infrastructure and research teams required for real-time insights and feedback in the virtuous cycle of continuous learning;
• create a working network of stakeholders, including patients as partners in research, for expedited coordination, collaboration, and, as required, governance;
• establish shared network-wide goals and a process for tracking and adapting strategies;
• characterize the anticipated and actual results for improvement, in qualitative and quantitative personal, societal, and economic terms;
• link those real and potential returns to investments and investment requirements among stakeholders—federal and nonfederal; and
• capture and communicate the contributions, real and potential, in a broad, visible, and deliberate campaign.

Accomplishing such an agenda will require continued engagement and conversations among evidence producers and evidence users as well as greater collaboration and articulation of research priorities among federal and nonfederal funders of health services research. Underscored was the potential to position the NAM meeting and conversation as starting point for a national conversation about the future of the field because the health services research field is ripe for

disruption. Lisa Simpson, from AcademyHealth, stated that “we are at a pivotal time in thinking about federal support for health services research. . . . There is a policy window of opportunity that is opening.” As the field moves forward and federal programs are reauthorized, eliminated, or transformed, plentiful opportunities will arise to create something “new, different, more responsive.”

The critical policy window, combined with the outstanding issues within the United States health care system, present an important opportunity for the field of health services research to articulate its priority and demonstrate its utility. Richard Besser highlighted the need for the field to focus on action. Better health in America, from the local to the national level, requires the contributions of health services research, and, in order to promote action, it is necessary for the field of health services research to work with people in other sectors to bring their methods to bear on broader questions about health and well-being.

“We want to understand how the health care system fits into the broader picture,” he concluded. Health services researchers “are the ones who can help answer that question.” In addition, Carolyn Clancy and Andrew Bindman commented that decision makers and policy makers do not generally have the luxury to wait for perfect health services research. Instead, they need to act with whatever information they have, and the health services research community needs to be responsive to this. Providing those quick returns can build credibility for health services research, so that clients know researchers can provide value in building toward longer-term goals.

In the final analysis, capturing the insights, opportunities, and obligations identified during this National Academy of Medicine meeting will require sustained and deliberate conversations involving stakeholders from throughout the nation. Those conversations have started, but achieving their potential for impact will require commitment and active involvement in the years ahead from the organizations represented at the meeting, not only on their own behalf, but as recruiters, motivators, and engagers of public and private stakeholders across the nation. Congress has recently made available resources and a mandate to study future federal funding in the field. This NAM meeting and publication can serve as a reference and foundation for that work. The physical and financial health of the nation is at stake.

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