Consumerism is Alive - Think Again!
Public Policy doesn't Include the Consumer Voice!
Existing public policy and legal regulation recognizes the individual as the primary decision-maker in the release of information transaction (HITECH, 2014; U.S. Department of Health & Human Services, 2013). Federal public policy has more recently involved consumer engagement campaigns to organize consumer feedback pertaining to topics on consumer data management, such as how to view, download, and transmit that information (ONC, 2015). Research findings support consumer desire for granular control of their health care data (Caine et al., 2015; Dhopeshwarkar et al., 2012; Park et al., 2013; Patel et al., 2011; Schwartz et al., 2015). However, efforts have been hindered by outdated public policy, variation in interpretation of legal standards, and legal regulation that is difficult to operationalize in an electronic information management environment (Daniel et al., 2014). Consequently, public policy implementation in health care continues to be an issue, despite heavy incentives to digitize health data and create a learning health ecosystem.
One reason may be that typical public policy processes do not include feedback loop(s) that intentionally capture input from consumers or research findings, such as health data sharing preferences. System dynamics rely on reinforcing and balancing feedback (Cabrera & Cabrera, 2015). A resilient feedback loop restores balance to a system (Cabrera & Cabrera, 2015; Mitchell, 2009). A meta-resilient feedback loop allows a human to learn, create, design, and evolve programs (Mitchell, 2009). Resilient feedback loops in public policy may enable information, such as health data sharing preferences of consumers, to enter the system more quickly and ensure the next policy development cycle is better informed. Figure 1 shows a logic model that entails a “Resilient feedback loop: legal and public policy for consumer mediated data sharing model” (Moon, 2017). The logic model describes feedback loops that are critical to a dynamic, resilient system for public policy.
Health care public policy recently evolved to a point where consumers are considered stewards of personal health data (Daniel et al., 2014). Innovation has been slow for applications that provide access, control, or monitoring of personal health data based on preference. The public policy development framework for this study uses input from consumers’––the stewards of personal health data––and relevant research findings early in the development cycle. Evaluation to identify new, ongoing, or persistent systems gaps is important. Feedback loops allow for continuous rapid-cycle process improvement (Cabrera & Cabrera, 201; 5Mitchell, 2009). Evaluation findings can be used to support short- and long-term goals related to system change (Mitchell, 2009). Proactive processes ensure public policy reforms better align with consumer preferences. A dynamic public policy system driven by consumers’ voices and preferences would create resilient and meta-feedback loop(s) that support a more coordinated, transparent, and consumer-centric health ecosystem responsive to consumer sentiment.
When public policy changes - so will attention on technologies like Blockchain that provide ledger-audit systems that offer better protections to health and sensitive data like mental health, substance use and sexual disease or genetic predisposition.
Got health care data? Where is your voice?
Lisa Moon. Health Data Sharing Preferences of Consumers. University of Minnesota. Dissertation 2017.