FAIR Health Board Access—Chair Exit Interview with Sara Rosenbaum, JD

November 17, 2022

As one of the founding members of FAIR Health’s Board of Directors in 2009, Sara Rosenbaum, JD, assumed the role of Chair of the Board of Directors in January 2020 and will step down as Chair in December of this year. As a noted scholar and professor in the fields of public health policy and health law, she is the founding Chair of the Department of Health Policy and Harold and Jane Hirsh Professor of Health Law and Policy at the Milken Institute School of Public Health, The George Washington University.

Among myriad other achievements and honors, Ms. Rosenbaum is a member of the National Academy of Medicine and was the 2020 recipient of its Adam Yarmolinsky Medal, which recognizes distinguished service by members whose disciplines are outside the fields of health and the medical sciences. She also was a founding Commissioner and former Chair of the Congressional Medicaid and CHIP Payment and Access Commission (MACPAC). Notably, as a member of the White House Domestic Policy Council under President Clinton, she directed the drafting of the Health Security Act and oversaw the development of the Vaccines for Children program. Earlier this year, Washingtonian identified Ms. Rosenbaum as one of Washington, DC’s top 500 influential people shaping policy.

As her distinguished service as Board Chair comes to a close, Ms. Rosenbaum spoke with FAIR Health Access about FAIR Health’s evolution over the past decade plus and its potential role in helping stakeholders navigate existing and nascent challenges in the coming years.

FAIR Health (FH): You were one of three founding members of the FAIR Health Board of Directors and closely witnessed the organization’s growth since its inception in 2009. What made the creation of FAIR Health unique?

Sara Rosenbaum (SR): FAIR Health’s founding was quite unique—its birth, its purpose and its status. It still is a unique organization; I don’t think there are any entities that do what FAIR Health does. FAIR Health originated from a settlement reached between the New York State Attorney General’s Office and the insurance industry; the settlement helped the state of New York set up a new nonprofit corporation to be known as FAIR Health, which would fairly and impartially collect healthcare claims data and provide insurers and researchers what they needed. The assumption was that FAIR Health would operate not only in New York but would, over time, establish itself in other states as well. FAIR Health also was to have a public benefit: to educate people and communities about the particulars of insurance.

There’s never been another entity like FAIR Health—wholly independent of any payor, healthcare provider or stakeholder. FAIR Health is an honest broker: It collects and organizes the claims data into formats that insurers, researchers and other stakeholders need and readies the information for analysis. FAIR Health also has become so technologically advanced that it can organize the data to look at specific conditions and diagnoses. An insurer, for business reasons, might want to know what an appendectomy costs in a specific region and therefore how to set its rates. But on a vaster scale, researchers might want to know, “Who are the people getting appendectomies? Is it a diverse population? Are certain people getting appendectomies only at a very late-stage diagnosis of appendicitis?” The insurance claims can tell stories about who is getting the healthcare represented in the claims.

FH: What, if anything, has surprised you about FAIR Health’s evolution throughout the more than 10 years since its founding?

SR: The only thing that has surprised me is the speed and the degree to which FAIR Health established itself and became a leader in the field. I knew FAIR Health would be successful because the Board of Directors had many experienced lawyers, public health figures, medical professionals and former officials. Of course, they found an extraordinary leader in Robin Gelburd, who is herself quite unique and was able to accomplish what other people might not have been able to accomplish.

FH: How did your background in health policy and law prepare you for serving on and then chairing FAIR Health’s multi-stakeholder Board of Directors?

SR: In the beginning, you don’t want a Board of Directors that doesn’t fundamentally “get” what the organization is about or what it is obligated to do. I was very familiar with the policy-making process and understood the nature and legal basis of FAIR Health, its obligations under law and its duties. All of that was terribly important. My career as an insurance lawyer specializing in insurance and related programs for very poor people involves understanding insurance more broadly. So, the fact that I implicitly understood what the entity, FAIR Health, would be, what it would have to do, what getting the job done would entail and how its information would be used all probably helped as well.

FH: Considering the range of FAIR Health’s contributions to the healthcare sector, of which are you most proud?

SR: In the end, restoring the fairness and impartiality of the data. With our healthcare system, which runs on billions of individual claims, you need an honest broker at the helm to collect, organize and make available that information by publicly reporting about what can be reported on and making the aggregated, de-identified data available to researchers in appropriate forms that inform research about health and healthcare. My pride comes from seeing that FAIR Health has performed not only its specific business mission, but its broader charitable mission, so well.

FH: What is your biggest disappointment?

SR: My biggest disappointment is that, namely, for the single most important form of insurance for lower-income and more vulnerable people—the Medicaid program—FAIR Health is simply unable to do what it’s done for commercial payors, like comparative studies, because there is no national repository of Medicaid data. States are not under any obligation to provide their claims data to the federal government. As a result, we cannot tell stories that could be told about whether care for people who are covered by Medicaid is as quick, as early in diagnosing or as comprehensive compared to care for those covered by private insurance because we are missing the comparison. Specialized studies and small area studies tell us that there are enormous disparities, but we cannot look at them systematically on a large scale. We also, of course, cannot look at care for the uninsured, who are not captured in the FAIR Health data.

FH: The COVID-19 pandemic, which began a few months after you became Chair of the Board in January 2020, laid bare the healthcare disparities and vulnerabilities that existed in our healthcare system. What do you think was the most significant public health and health policy issue that the pandemic underscored?

SR: It is probably how valiantly the health system tried and how badly it performed under stress for people who were the most vulnerable. The behavior of healthcare providers was positively heroic. Nonetheless, the gross inequities of the American healthcare system, which have been written about for years, were no better on display than they were during the pandemic. The system failed the people who were the most at risk, because they had the jobs and lives that wouldn’t let them just stay in the comfort of their homes and do everything remotely.

FH: In your view, what are the appropriate next steps for addressing these issues?

SR: There are many next steps, such as investing in the infrastructure of providers like community health centers and public hospitals that are located in communities that need care the most in order to strengthen their service capacity and make it easier for them to recruit and retain staff. But it also involves the living conditions and the broader social conditions in which people live. Recently, much has been written about improvements in child poverty, but poverty—with all its attendant health risks—is still very entrenched in the United States. In New York, where FAIR Health is headquartered, the disparities between rich and poor, the quality of housing, the safety of neighborhoods all affect health. FAIR Health can tell us about those social determinants. FAIR Health has, I think, played a pivotal role by investing in health research and health information tools that inform how to make health and healthcare more equitable.

FH: As you look to the future, what are the most pressing challenges facing healthcare stakeholders? What role do you expect FAIR Health to play in supporting stakeholders in navigating those challenges?

SR: There is continual tension about how to make a healthcare system operate with greater equity and greater efficiency. To do that, we need data across the entire healthcare system, and across all payors. FAIR Health will be limited in what it can do in this respect as long as the biggest payor of all for healthcare for low-income people, Medicaid, simply does not produce the data that FAIR Health could take and do such a good job analyzing.

FH: How do you think FAIR Health will evolve in the next five years?

SR: I think FAIR Health will just get better at what it does. FAIR Health is eminently successful at serving the private insurance market, serving the Medicare market and getting business branching out into other forms of insurance. But I think the fundamental issue of how FAIR Health can further contribute to a fairer healthcare system—which I know it’s very eager to do—can’t happen until Medicaid data becomes systematically available to an organization like FAIR Health.

FAIR Health interviews reflect the views of the interviewee in his or her individual capacity and not necessarily those of FAIR Health or other organizations with which the interviewee is affiliated.