LeadingAge CAST and eight other organizations have named two components needed to sustain consumers’ interest in and use of health IT, including portals and apps:

• The data must be interoperable, detailed, accurate, and timely.
• The app must reduce the amount of time consumers spend obtaining their data and achieving their specific objectives. 

The Office of the National Coordinator for Health Information Technology (ONC) wishes to fully leverage open and standards-based application programming interfaces (APIs) to increase consumer access and use of health information through software applications (apps). An API is a software intermediary that allows two applications to talk to one another. The ONC hopes to spur innovation in using APIs and apps for consumer-directed data exchange and increased participation in research.

LeadingAge CAST was one of nine patient representative and consumer organizations invited to join an ONC effort to understand consumer-directed data exchange. Both Majd Alwan, Ph.D., CAST executive director and LeadingAge senior vice president of technology and business strategy, and Scott Code, CAST senior director, were interviewed as domain experts.

Discussions centered on the following:

• The broader experience and use of APIs and apps by the consumers they serve.
• An understanding of the multiple uses and benefits of APIs and apps.
• The health IT policy and implementation issues related to API and app use. 

Findings

The resulting ONC report, “Accelerating Application Programming Interfaces for Scientific Discovery: Consumer Perspectives,” shared these findings: 

• Consumers Are Unaware: Consumers have little awareness of available APIs and apps as tools for obtaining and managing health data—even consumers with strong motivators to obtain and manage their information, including those with rare, hereditary, terminal, or chronic diseases.
• Healthy Consumers Are Not Users: APIs and apps are unlikely to generate strong appeal to consumers who, because they are healthy, may not be motivated to actively use health data to manage care or participate in research. 
• Marketing and Outreach Are Recommended: To increase awareness and use of APIs and apps among this population, recommendations included targeted marketing, outreach from well-established patient representative and consumer organizations, and communication from trusted intermediaries. APIs and apps focused on maintaining health and wellness may attract broader use and participation in research.
• API and App Development Are Growing Exponentially, but Privacy Is Critical: While discussants spoke positively about the potential of APIs and apps to expand consumer control over health data, they expressed strong privacy concerns about APIs and apps and devices that reuse and sell data. The lack of clarity about how those data are used also concerned discussants. Awareness of regulatory oversight of APIs and apps may be lacking. Transparent consent processes and data use agreements are critical. Tools from reputable research and advocacy organizations were seen as most trustworthy. 

Recommendations

Discussants noted that increasing the use of consumer-generated data in research and clinical decision-making is critical. So is doing all the following:

• Urging security safeguards and consent management approaches to protect consumer privacy.
• Emphasizing the need to educate consumers about the benefits and risks of capturing and sharing their data through APIs and apps.
• Positioning consumers to be in control of how and when their data is used and shared to avoid “missed opportunities” for consumer engagement. 

See the full report.