Since 1992, when David Sackett popularized the term “evidence-based medicine,” researchers, health system leaders, and policymakers have striven to enhance and accelerate the development and implementation of relevant evidence. Today, the COVID-19 pandemic is pushing this paradigm to its limits given the lack of evidence to support so many aspects of the responses to the COVID-19 pandemic. As stated by Neel Shah, M.D., assistant professor of obstetrics, gynecology, and reproductive biology at Harvard Medical School, “These are not normal times. The speed at which knowledge is evolving is humbling.”
Meanwhile, others worry that the urgency of the situation—with lives at stake depending on daily decisions—will relax too much our standards of treatment evaluations and put patients at risk. While these discussions have focused primarily on the critical questions of effectively treating the disease at the patient level, it is just as important to examine choices health systems are making and maximize what we are learning about the effective deployment of health care resources. This has triggered a new urgency within the health services research (HSR) field to determine how best to facilitate health system responses grounded in evidence, yet adapted to the unique needs of each setting. Health services researchers, and the organizations that fund them, need to know what the most pressing questions are that health systems have. To that end, AcademyHealth recently developed and released a research agenda identifying priorities for rapid-cycle evaluations to inform health system leaders and care providers in their response to the pandemic. While the full report provides recommendations to funders to guide strategic investments in responsive research, the exercise itself surfaced insights about the current state of the HSR field, both in terms of what it has to offer and where it needs to grow in response to a global health crisis.
The expanding scope of HSR
When we launched the idea generation phase of this effort, it was organized around three domains of evaluation topics: 1) health system actions related to care delivery within the health system; 2) health system actions focused outside the health system; and 3) other questions that did not fit neatly into either of the first two domains.
However, after the next phase—a virtual discussion with dozens of health system experts—it became clear that these three domains could not adequately represent the breadth of HSR questions of immediate concern to health system leaders in this time of COVID-19. Themes such as patient experience and engagement, health care workforce, and policy began to emerge as their own domains, reflecting the far-reaching impacts of COVID-19 not only on directly affected patients but also on the larger web of systems that contribute to health in communities. The breadth of topics now proposed comes from a diverse set of stakeholder voices, and the priorities reflect a consensus of thought leaders from health systems, academic and research organizations, patient groups, and funders.
As a result of this broad discussion, priority questions were developed within each of six domains:
- Patient and community experience, engagement, and outcomes
- Care delivery, management, decision-making, and operations
- Workforce needs, training, and policies
- Technology, data, and telehealth
- Policies, including payment policy
- Collaboration and coordination
Complex challenges require diverse perspectives, expertise, and methods
HSR is well positioned to play a key role in addressing the health system challenges laid bare by the pandemic by drawing on a broad spectrum of experts. The field has evolved over the last 60 years from one dominated by social scientists (especially academic health economists) and policy experts to one that is far more diverse in many dimensions. The field also now engages researchers in a variety of employment settings including embedded researchers in health systems, clinical providers, health system leaders, patient advocates, data scientists, public health organizations, and others whose collective expertise is essential to find the right solutions.
AcademyHealth has observed this blurring of boundaries in the evolution of our membership, from one with a dominant focus on university-based researchers to a wider range of professionals representing embedded research, patient engagement, policy, and public health practice. The shift has been significant enough to result in real changes to how we serve our community. For example, we have enhanced our connection to delivery systems through new partnerships, a new Learning Health System Interest Group, and a community of practice for embedded health services researchers within health systems to connect and learn from each other.
Beyond welcoming diverse disciplines, we must do a better job of recruiting and engaging researchers with a variety of lived experiences who can bring their unique perspectives to addressing a range of health and health care challenges, including but not limited to the persistent challenge of ensuring health equity. The need for improvement in this area is underscored by the recent data on the pandemic’s disproportionate effect on communities of color. Indeed, the theme of equity came up in multiple domains from technology to the patient experience. To embed health equity in all we do, we as a field must prioritize diversity and inclusion. While not all disparities researchers are themselves persons of color, it is clear that HSR—like the rest of health research—suffers from an underrepresentation of African American, Latinx, and Native American researchers among its ranks.
Not only do we need diverse perspectives and expertise, but we must also employ a range of methods, rapidly develop new data collection tools, and make better use of existing data sources that health systems have built up in recent years in order to answer pressing questions. For example, the field has quickly moved to facilitate the collection and availability of the data needed to study the progression of the virus. Organizations have moved to develop data registries and portals to enable researchers, health system leaders, and policymakers to better understand the impact of COVID-19.
The prioritized questions also underscore the growing need for, and role of, research that is partnered with or even embedded in health systems to be able to quickly produce reliable answers to pressing questions. Closer partnerships between users of evidence and those producing it is a broad need within the field, as is a need for more rapid results that can still be trusted. Similarly, motivation to understand the bidirectional relationship between social needs and patient outcomes was incorporated in the patient/community experience, technology/data, and collaboration domains.
Connecting evidence to decision makers when and how they need it
The urgent need for actionable results in the face of the pandemic reinforces a growing emphasis within HSR for more rapid evaluation of the implementation of interventions and strong connections to operational leaders. Indeed, this priority-setting exercise itself was a rapid-cycle response to questions voiced by health care and research leaders. From idea generation to report publication, this project spanned four weeks. The fact that so many nationally recognized experts participated in this effort at a time when all are stretched thin is testament that HSR is also making progress in connecting with various sectors of end-users as the field expands to include a more practical focus.
The growing discipline of dissemination and implementation research employs particularly relevant methods that can support this responsiveness to end-users, strengthening or building new bridges between traditional HSR and operations/quality improvement in service of the COVID-19 response. However, for research to be timely and responsive, funders need to develop a broader and more rapid range of funding mechanisms.
Just as securing funds for research takes time, there is the question of how quickly these COVID-19-relevant HSR findings can be disseminated. There is room for optimism, however, as leading journals have dramatically increased their ability to publish peer-reviewed articles within weeks in response to the pandemic. A parallel trend is the dramatic growth in the use of pre-publication platforms such as medRxiv, which now has more than 1,500 preprints on COVID-19. The question is whether we will be able to maintain this progress toward rapid dissemination in the longer term – something the AcademyHealth Paradigm Project has been wrestling with for the last 18 months.
The COVID-19 pandemic has arrived at a time of transition and self-reflection in the field of health services research. The growing recognition that HSR operates in a fundamentally different world than when the field was established is inspiring a movement toward more transparent, open research that is nimble and responsive to the needs of decision makers in policy and practice. The rapid-cycle evaluation priorities detailed in the full report reflect the expansion of HSR’s scope beyond its traditional focus on investigator-initiated research targeting medical service delivery to include a broader range of social factors, disparities, and meaningful involvement of the patient voice in research efforts to immediately impact practice and policy. The pandemic is an opportunity for HSR to demonstrate its value to health systems, policy/decision makers, and patients. Just as the passage of the Affordable Care Act was a call to action for the field, so is this unprecedented crisis. Our response will be remembered and judged.
Join Drs. Simpson, Savitz and Luft on a free webinar on this topic, Supporting Health Systems’ Response to COVID-19, on Wednesday, May 20, at 12 PM ET. Register in advance here. After registering, you will receive a confirmation email containing information about joining the meeting.