Data is key to improving health outcomes and creating efficiencies in our health care system. However, the National Pharmaceutical Council has found that existing policy inconsistencies and hurdles can hinder use of publicly funded federal and state datasets. These limitations can make it harder to conduct high-quality research to inform clinical decision-making, identify cost-effective, evidence-based care and evaluate innovative systems and payment designs.
Health data held by federal and state agencies could be used by a wide variety of stakeholders to improve health outcomes and create system efficiencies. Access to publicly funded federal health data can help clinicians and other providers make better treatment decisions by determining more effective ways to manage high-risk patients. It also supports emerging delivery system and payment models that have been shown to improve health and health care. And, having access to the data will help to make health care more transparent for consumers.
Despite movement in the right direction with the Centers for Medicare and Medicaid’s loosening of data access restrictions for certain information, more work needs to be done to reduce the barriers to data.
Four recommendations to reduce barriers include:
- Emphasizing 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.
- Increasing 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.
- Utilizing 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.
- Alleviating 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.