Leaders from Multiple Health Sectors Identify Challenges in Accessing Federal Health Data to Improve Health, Healthcare
Report from Healthcare Leadership Council, Bipartisan Policy Center Underscores Importance of Data Access to Clinical Decision-making, Population Health, Health System Improvements
WASHINGTON – Healthcare leaders from multiple sectors believe government policymakers should move toward expanding access to federally-held health data in order to elevate population health, improve clinical and consumer decision-making and support improving delivery and payment system models designed to improve American healthcare, according to a report released today by the Healthcare Leadership Council (HLC) and the Bipartisan Policy Center (BPC).
The report summarizes the outcomes of an April 3 roundtable discussion hosted by HLC and BPC involving more than 35 leaders from academic and research institutions, hospitals and health systems, health plans, life sciences organizations and technology companies. Representatives from the Centers for Medicare and Medicaid Services, the National Institutes of Health, the Department of Veterans Affairs and the Patient-Centered Outcomes Research Institute participated as well.
Health leaders identified three areas in which they said there are challenges in gaining access to and utilizing federal health data, including (1) limitations on access to Medicare data, (2) lack of flexibility in data use agreements and (3) restrictions associated with entities that have a commercial interest.
In their report – Access to Federal Health Data: A Key Imperative for Improving Health and Health Care — HLC and BPC recommend that federal authorities should make data collected from government programs available for research, with appropriate privacy protections, noting that private sector organizations should have this access in order to join with the federal government in national efforts to improve care while lowering costs. The organizations also recommend that the federal government convene a broad discussion of stakeholders to establish revisit current policies related to restrictions on access health data, and their rationale. Further, the Administration, according to HLC and BPC, should explore uniform data access methods and usage agreements to be utilized by all federal agencies.
“Data is the engine that will drive the coming evolution in high-quality, cost-efficient, evidence-based healthcare,” said HLC president Mary R. Grealy. “Many of our data access policies and practices were designed for a time in which we didn’t have the capacity to harness the torrents of information generated by patients, physicians, hospitals, laboratories, pharmacies and all of those involved in the healthcare continuum. No entity controls a greater volume of health data than the federal government. Now is the time to determine how to make that information available to improve health care and the health of our fellow citizens.”
“Healthcare-related data plays a critical in improving health and healthcare in the United States,” stated Janet Marchibroda, Director of BPC’s Health Innovation Initiative. “Access to a wide range of data–including those from the public sector–supports the delivery of more coordinated, cost-effective care; drives improvement in the health of populations; and empowers individuals as they navigate their health and healthcare.”
BPC and HLC are planning further roundtable discussions with leaders from the government, private sector and academia to explore issues associated with health data.
The Healthcare Leadership Council (www.hlc.org) is a coalition of chief executives from all disciplines within American healthcare. It is the exclusive forum for the nation’s healthcare leaders to jointly develop policies, plans and programs to achieve their vision of a 21st century system that makes affordable, high-quality care accessible to all Americans.
About the Bipartisan Policy Center
Founded in 2007 by former U.S. Senate Majority Leaders Howard Baker, Tom Daschle, Bob Dole, and George Mitchell, Bipartisan Policy Center (BPC) is a non-profit organization that drives principled solutions through rigorous analysis, reasoned negotiation and respectful dialogue. With projects in multiple issue areas, BPC combines politically balanced policymaking with strong, proactive advocacy and outreach. http://www.bipartisanpolicy.org/.
