The Future of Health Data Sharing: Giving Consumers Private and Portable Access to Their Own Medical Records

If used and shared effectively, electronic health records (EHRs) have the potential to improve the quality and convenience of health care and the effectiveness of health research. In 2009, Congress passed the HITECH Act to give every American access to private, secure, and portable electronic health records. While the United States has made substantial progress in digitizing health records, most patients are still unable to easily transfer their complete medical records to a new provider, share their records securely with other family members or caregivers, or donate their medical data for research. These problems lower the quality of care patients receive, reduce competition among providers, raise costs for health-care payers, and stand in the way of advancements in data-driven medicine.

ITIF hosted a discussion to consider the path forward in medical data sharing for consumers and what policymakers can do to reduce health information blocking, give consumers access to their medical data, and fully realize the benefits of the health information revolution. The panel members shared a common vision of patient-centric and patient-controlled data, which would allow all health-care consumers to access their complete medical records and share their health information with whomever they see fit.

Unfortunately, as Dr. William Yasnoff, president of the Health Record Banking Alliance, made clear, there are five major challenges that stand in the way of better sharing this information. First, most Americans do not have a complete electronic health record, which can lead to costly, painful, and avoidable errors. While advancements such as mobile applications and online portals have made it easier for patients to manage the health records to which they do have access, the availability of these tools depends on their provider. Second, there are still no universal standards for EHRs. Without effective standards, this information is difficult to share and use across different types of systems. Third, EHRs are not always accessible by consumers or healthcare providers. Fourth, the industry needs to ensure privacy and security for EHRs. And finally, to fully realize the potential of EHRs, the system must be financially sustainable.

David Kendall, senior fellow at the nonprofit think tank Third Way, added that the incentives to share EHR data were not yet strong enough for effective industry sharing. However, this trend is starting to change due to value-based health care, and several innovative healthcare providers are leading in this field. Kendall advocated that Medicare support both providers and plans that want to exchange and aggregate EHRs, building existing rewards into high quality care to provide data sharing incentives to providers. Yasnoff agreed with this sentiment, proposing that the Centers for Medicare and Medicaid fund pilot health record banks.

The panelists agreed that there is a need for an industry standard for EHRs. Aneesh Chopra, former U.S. Chief Technology Officer, argues the United States has reached its “goldilocks” moment, where the public and private sector is a good place to work together to set data standards, develop APIs, and start sharing information. Chopra urged that rather than having the federal government mandate interoperability, it should encourage collaboration amongst health-care providers and industry stakeholders.

However, the panelists disagreed on how to incentivize stakeholders to pursue patient-centric and comprehensive data-sharing practices and how the government could implement effective and well-targeted regulations. Yasnoff explained that many Accountable Care Organizations (ACOs)—healthcare organizations that connect payments to quality metrics of healthcare and its costs—are each developing their own architecture, and the government should create incentives to remove silos where these systems are not interoperable. Chopra disagreed, explaining that while ACOs are developing their own infrastructure—thanks to the work of the Office of the National Coordinator for Health Information Technology (ONC)—there is already a common application standard for data to start being shared between applications. ONC’s work, Chopra explained, was already moving ACOs in the right direction to give consumers more control and access to their EHRs.

All the panelists emphasized the critical importance of proper privacy and security protection mechanisms in health-data sharing, which is particularly paramount in the field of data-driven medicine. While the HITECH Act established a financial burden for health-care companies who are subject to a data breach, Chopra explained the overarching need for more resource allocation towards cybersecurity.

Overall, the discussion highlighted the monumental benefits that effective health-data sharing can present for patients and health-care providers alike. In addition, it outlined the various paths that can be taken in order to achieve those benefits, the most important of which is moving forward with a collaborative effort amongst all industry stakeholders to establish a patient-centric sharing standard.