Article by Michael Stebbins & Eric Perakslis: “By shifting funding from small underpowered randomized control trials to large field experiments in which many different treatments are tested synchronously in a large population using the same objective measure of success, so-called megastudies can start to drive people toward healthier lifestyles. Megastudies will allow us to more quickly determine what works, in whom, and when for health-related behavioral interventions, saving tremendous dollars over traditional randomized controlled trial (RCT) approaches because of the scalability. But doing so requires the government to back the establishment of a research platform that sits on top of a large, diverse cohort of people with deep demographic data.
According to the National Research Council, almost half of premature deaths (< 86 years of age) are caused by behavioral factors. Poor diet, high blood pressure, sedentary lifestyle, obesity, and tobacco use are the primary causes of early death for most of these people. Yet, despite studying these factors for decades, we know surprisingly little about what can be done to turn these unhealthy behaviors into healthier ones. This has not been due to a lack of effort. Thousands of randomized controlled trials intended to uncover messaging and incentives that can be used to steer people towards healthier behaviors have failed to yield impactful steps that can be broadly deployed to drive behavioral change across our diverse population. For sure, changing human behavior through such mechanisms is controversial, and difficult. Nonetheless studying how to bend behavior should be a national imperative if we are to extend healthspan and address the declining lifespan of Americans at scale….There is substantial risk when bringing together such deep personal data on a large population of people. While companies compile deep data all the time, it is unusual to do so for research purposes and will, for sure, raise some eyebrows, as has been the case for large studies like the aforementioned All of Us and the Million Veteran’s Program.
Patients fear misuse of their data, inaccurate recommendations, and biased algorithms—especially among historically marginalized populations. Patients must trust that their data is being used for good, not for marketing purposes and determining their insurance rates.
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Need for Data Interoperability
Many healthcare and community systems operate in data silos and data integration is a perennial challenge in healthcare. Patient-generated data from wearables, apps, or remote sensors often do not integrate with electronic health record data or demographic data gathered from elsewhere, limiting the precision and personalization of behavior-change interventions. This lack of interoperability undermines both provider engagement and user benefit..(More)”.
