Tackling Data Access at Health Datapalooza

By Jennifer Graff, PharmD, NPC VP for Comparative Effectiveness Research

We’re looking forward to participating in Health Datapalooza next week, which brings together an unprecedented group of health care and big data thought leaders to focus on ways to better use data to improve health care outcomes and delivery systems.

While it’s exciting to consider all of the things we can learn from health care data, not all stakeholders are able to participate as fully in those endeavors. Some stakeholders—often those deemed to be “commercial,” or “innovators and entrepreneurs”—are blocked from accessing certain taxpayer-funded health databases, even though their expertise could help to address a variety of health questions.

It’s unfortunate that these barrier exists, as different stakeholder perspectives often lead us to new solutions. Publicly funded datasets have great potential to fuel quality research, the kind of research that could address challenges such as identifying patients at risk for hospital readmission, factors associated with medication treatment adherence, and treatment response among different patient populations, among other issues. There is a fundamental need to balance patient privacy with appropriate data access, but reducing barriers will help researchers maximize the potential utility of public datasets.

To understand where these barriers exist and how widespread they are, we worked with researchers from the University of Pennsylvania and the University of Maryland to identify 116 federal and state datasets and conduct an in-depth analysis of nine federal datasets and 10 publicly funded, state all-payer claims databases (APCDs).

The peer-reviewed study found that there is significant variation—sometimes within the same federal agency—in access restrictions based on the data request’s purpose and the requestor’s affiliation and funding source. In other cases, there were numerous indirect hurdles to using the data, including high user fees, prolonged wait times for data request approval and data delivery, and recency of data.

In addition, there was variation in data access policies across the 10 APCDs analyzed. Four states—Kansas, Minnesota, Tennessee and Vermont—provided access to state government and contractors only. The other six states—Colorado, Maine, Maryland, Massachusetts, New Hampshire and Oregon—produce types of files that are available to external requestors; however, policies varied considerably.

There are some bright spots. One innovative approach to data access is the decision by the Centers for Medicare and Medicaid Services (CMS) to allow access to its claims data to “innovators and entrepreneurs,” regardless of funding or affiliation. However, cost and timeliness issues persist.

It’s clear that changes are needed to help researchers tackle important health questions. Based on the findings of our study, we suggest four recommendations to reduce barriers and restrictions of data accessibility:

• Emphasize research quality and intent—Rather than simply focusing on a requestor’s affiliation and/or funding source, data access policies placing emphasis on quality and intent of the research request create greater opportunities while maintaining protection of patient privacy.
• Increase availability of granular data that can be linked—The ability to link across multiple datasets, including claims and electronic health records, is increasingly important to accelerate understanding and evaluation of the impact that initiatives, such as precision medicine, have on health care quality, effectiveness and value.
• Utilize technology to enhance data security—Privacy concerns may be allayed by providing remote access to data and ensuring a secure environment by limiting researchers’ ability to download individual-level results.
• Alleviate indirect access barriers—Use of approaches such as tiered pricing for data user fees, whereby commercial entities with greater resources are charged higher fees that help offset lower fees collected from academic and nonprofits, could enable more investigators to explore important research questions.

We don’t expect that data access changes will happen overnight. But we are looking forward to a robust conversation at Health Datapalooza about how all stakeholders can access and harness the power of data. It’s time to get rid of the biases and recognize that we all have an important role to play in improving patients’ lives and exploring ways to enhance health system efficiencies.

To learn more about this topic, download the data access study and infographic. You can also catch NPC Vice President for Comparative Effectiveness Research Dr. Jennifer Graff’s panel discussion, “Crossing the Divide Between Big Data and Life Sciences,” at Health Datapalooza and visit NPC’s exhibition booth (#19).