As we prepare for the 30th Anniversary AcademyHealth Annual Research Meeting (ARM), we’ve asked leaders in the field to share some of their memories of the event and/or perspectives on how the field has changed since our first meeting in 1983. Below is a submission from Dr. Carolyn Clancy, Director of the Agency for Healthcare Research and Quality (AHRQ).[i] sought basic information on two important questions: What are the national trends in the quality of health care provided to the American people? And, what are the prevailing disparities in health care delivery as they relate to racial and socioeconomic factors in our priority populations? In certain respects, these types of questions mirror the analytical framework that health services researchers use as we attempt to understand a wide range of cost, access and quality issues. We define a significant research question, collect and crunch voluminous amounts of data, describe the magnitude or direction of change informed by that data, and articulate implications for policy and future research. Occasionally, research findings can inform a current policy debate or confirm or refute the value of a particular intervention. As AHRQ’s Director, I strongly support health services research that deepens our understanding of the status and impact of changes to our health care system. But today, observing, measuring, and reporting back our findings to researchers, policymakers and others with similar expertise is no longer good enough. At a time when implementation of the Affordable Care Act compels us to deliver high-quality, safe, and cost-efficient care, we need to embrace collaborative, or participatory, research models. Many of AcademyHealth’s members and readers of Health Services Research are likely to be familiar with the emerging interest in collaborative research. Briefly, this model calls on researchers to work with the “end users” of the information generated by that research – hospitals and health systems, clinicians, advocacy groups, and, most important, patients themselves. As Andy Bindman’s recent Health Services Research editorial points out, this collaborative approach clearly represents the leading edge for health services researchers focused on informing policy. For example, the Keystone Project, funded by AHRQ, involved close collaboration by the Johns Hopkins team with the Michigan Hospital Association, Blue Cross Blue Shield of Michigan, frontline clinicians, and hospital leaders.[ii] AHRQ’s authority for comparative effectiveness research requires ongoing consultation with stakeholders to identify priorities for research. Stakeholders also have ample opportunity to comment on specific topics and draft final reports. Both the Patient-Centered Outcomes Research Institute and the Centers for Medicare and Medicaid Innovation are funding the researchers who are collaborating with the end-users of their work. [iii] I don’t underestimate the enormous change that the shift to collaborative research represents to those of us trained – and rewarded – by the traditional, top-down, model. Now, instead of us defining the research question, we must seek the input and perspective from the end users at the outset and throughout the research process, respond to and act on feedback that we hadn’t considered before, and better communicate our findings to new audiences in ways they can understand. All of this will take place against the backdrop of funding challenges that are an ongoing reality. How might participatory research work -- not just in concept, but in reality? Let’s use AHRQ’s latest Quality and Disparities reports, which are being published in this month and reflect large amounts of data compiled in 2012.[iv] The reports found that hospitalizations for uncontrolled diabetes are about four times higher for low-income groups (41 percent vs. 10 percent), and about three times higher for blacks than for whites (62 percent vs. 14 percent). To many of us, this data is yet another unfortunate confirmation of findings that have been reported for years. How might a collaborative research approach begin to change some of these entrenched patterns? Advocate Health Care, a health system outside of Chicago, is beginning to translate well-known research findings into genuine improvements in patients’ health.[v] The system, an accountable care organization (ACO), has hired care coordinators for high-cost patients, including those with diabetes, who interact frequently with them on managing their disease. It also provides doctors’ offices with report cards on how their patients are faring. Advocate has seen its overall admissions drop by 6 percent, and hospital days are down by 9 percent. Because it is a large, clinically and technologically integrated health system, Advocate’s approach to putting knowledge into practice in caring for high-cost patients will not work everywhere. But it is already providing insight into the kind of information that end-users – in this case, doctors, care coordinators, and patients – need to manage a costly chronic disease more effectively and efficiently. Translating health services research knowledge and disseminating it more broadly is a complex undertaking, but signs of change in its support have already emerged. This general topic was the focus of one session at AcademyHealth’s 2012 annual research meeting. [vi] One fascinating takeaway of that session was the trend by academic journals to launch rapid-cycle peer review to speed the usefulness of the research findings. Frontiers in Public Health Services and Systems Research, a new journal from the National Coordinating Center for Public Health Services and Systems Research, is targeting an 8- to 10-week timeframe from submission to publication of peer-review articles that include “brief descriptions of preliminary findings from ongoing or recently completed empirical study” or quality improvement program. AHRQ proudly supports the Electronic Data Methods (EDM) Forum led by AcademyHealth. The EDM Forum facilitates collaboration on the use of electronic clinical data for the conduct of comparative effectiveness research, quality improvement, and clinical decision support by encouraging exchange and collaboration among researchers, funders, and other stakeholders.[vii] eGEMs (Generating Evidence & Methods to improve patient outcomes), a product of the EDM Forum, is an open-access journal focused on using electronic clinical data to advance research and quality improvement, with the overall goal of improving patient and community outcomes. Momentum is also taking place on engaging patients at the outset of major research undertakings. A newly appointed advisory panel on patient engagement was recently convened by PCORI, which will help the institute refine and prioritize research questions and demonstrate meaningful patient and stakeholder engagement efforts.[viii] Thirteen of the 21 members represent patients, caregivers, and patient advocates. In ways not envisioned 30 years ago, the challenges facing health services researchers today are as closely aligned as the opportunities for success. Your willingness to fully embrace collaborative research will influence the health of our nation’s population for years to come. Carolyn M. Clancy, MD, is Director of the Agency for Healthcare Research and Quality, Rockville, MD.
[i] U.S. Congress, 106th Session. Healthcare Research and Quality Act of 1999. Available at: http://www.ahrq.gov/policymakers/hrqa99a.html
[ii] Report Organization & Project Background: Final Report on the National On the CUSP: Stop BSI Project. January 2013. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/professionals/quality-patient-safety/cusp/clabsi-final/clabsifinal1.html
[iii] Bindman, A. The Evolution of Health Services Research. Health Services Research 48:2, April 2013.
[iv] Agency for Healthcare Research and Quality. 2012 National Healthcare Quality and Disparities Reports. May 2013. Available at: www.ahrq.gov/research/findings/nhqrdr/index.html.
[v] Lowrey, A. A Health Provider Strives to Keep Hospital Beds Empty. New York Times, April 23, 2013. Available at: http://www.nytimes.com/2013/04/24/business/accountable-care-helping-hospitals-keep-medical-costs-down.html?hpw
[vi] Academy Health. Using HSR to Influence Policy Change and Population Health Improvement, Research Insights. Available at: http://www.academyhealth.org/files/RI2013PopHealth.pdf