Shaping the Future of Digital Health: Key Themes Emerging from a Series of Roundtables on the Health Data Revolution

Technology is transforming nearly every aspect of the consumer health care experience, yet voices of consumers have largely been missing from the conversation. To explore the impact of this ongoing digital health revolution on consumers and family caregivers, and to help shape the development of policy and practice in this area, in 2019 the AARP Public Policy Institute joined with the National Partnership for Women & Families to host a three-part series of Innovation Roundtables. In these sessions, consumer and family caregiving advocates explored their concerns and priorities, and the role of consumers in shaping the future of digital health.

The first roundtable focused on how technology will revolutionize health. Issues and themes that emerged from that meeting included:

• The growing importance of health and literacy technology.
• The desire for developers to collaborate with end-users from the start.
• A call for new technologies and devices to foster connection and empathy, rather than enhance social isolation.
• The importance of new technologies being affordable and accessible for consumers.
• The need for technologies that confer agency to people and empower them to decide how and when they interact with technology.
• A focus on addressing and eliminating bias through both the health system and through policy.  

At the second roundtable, attendees explored the risks and unintended consequences of emerging technologies that generate, capture, and leverage consumer health data, and discussed shared values that can serve as guideposts when assessing technology and practice. Topics discussed included:

• Fairness in Precision Medicine. If marginalized groups don’t trust data collection or use, they may not be represented in the data sets that inform precision medicine—that is, the emerging field of tailoring highly targeted treatment to individuals—potentially exacerbating disparities in health outcomes. Furthermore, policy and regulation must ensure precision medicine applications don’t discriminate against certain populations.
  
  
• Legislative Efforts around Data Sharing. Currently, consumers must agree to a company’s terms of service (which means their data can be used, amassed, and sold) to use their services or platforms. Participants discussed the idea of granting consumers certain indelible data rights, or protections, that cannot be waived.

Transparency and portability was the topic of the final roundtable, where participants discussed:  

• Consumer Trust and Education. Particularly in the wake of well-publicized data breach scandals, trust must be built and strengthened with consumers if we are to enable the benefits of data flow.
   
• Health Data Commodification. Commodification and monetization of consumer health data is common, yet consumers who don’t realize how their information is being used and sold can’t meaningfully consent to the lengthy terms and conditions of most apps and digital services.
  
  
• Consumer Mediated Exchange. There is interest in consumer-mediated exchanges, where consumers can easily access, compile, and manage their own digital health information.

Policy Options for Exploration

Participants developed this list of policy options for exploration:

• Require plain language disclosures
• Support revocable consent
• Establish a consumer-controlled identity credential
• Launch a public education campaign about consumer rights and responsibilities around health data
• Create personalized, “My Terms of Service”
• Issue an annual consumer report on personal health data

Patient and consumer advocates see the potential for health data and technology to transform the care experience, while also recognizing the risks—specifically the potential for health data to be used to discriminate against individuals, particularly those with less social capital. Guarding against such outcomes will require input from all stakeholders.