With a smartphone in ever pocket and a biosensor in ever wearable, the convergence of mobile health, precision medicine, and real time data has created unprecedented research opportunities. Let’s take a look at a particularly compelling NIH program…
Not everyone wears a wearable, or measures their biometric data, but those who do have a chance to participate as partners in a biomedical research project of epic proportion. The “All of Us” study from the National Institute of Health goes beyond the longitudinal standard to create an entirely new research infrastructure replete with a shared dataset for years to come. They are asking for a million volunteers to share a diverse array of personal information to help pave the way for personalized medicine. You game?
Visit https://www.joinallofus.org/ to see the video, check out their privacy promise, and perhaps even sign up to the largest such study ever conducted. Run by Eric Dishman, former director of health innovation and policy at Intel and himself a cancer survivor, the landmark study is designed to delete the loaded word ‘cohort’ from our vocabularies. Dishman wants the rebranding to effectively pointing the way to the universal sharing of anonymized personal health data within a global learning health system, for the benefit of all researchers.
The ubiquity of wearables makes participation from a diverse and typically under-represented segment of the US population possible and even inviting. With the goal of capturing the broadest set of data possible, Dishman likes to substitute being “politically correct” with being “scientifically correct”—namely, launching a study that is as comprehensive and inclusive as possible. Currently in beta, the study will officially launch in November this year, all kinks ironed out and all systems go.
Along the way, privacy and security concerns remain a challenge—especially regarding genetic information. The difficulties are in both directions: Not having enough genetic counselors to properly make the data available to those who want to their own data is one issue, while knowing that hackers will attempt to steal it from everyone else. Cybersecurity is therefore a top priority, a problem hardly unique to mobile health but exacerbated by the sheer scale and critical mass of the study.
Digital Health to the Rescue
As this unprecedented wearables-driven study takes off, payers, providers, and their communication partners watch from the side lines, intrigued. As the definition of “cohort” shifts, so do the clinical constraints and cultural habits surrounding it. Akin to the shifting feelings around financial information, personal health information is gradually becoming a commodity that can and should be owned by its ultimate source: The individual. Convenience and expediency are slowly making the forbidden acceptable.
Security concerns notwithstanding, the shift in societal norms should usher in a new era of digital democratization through data. As the public—and clinicians—become progressively more comfortable with data collection, analysis, and sharing, opportunities in precision medicine and advanced research grow. By learning as much as we can from increasingly comprehensive and diverse audiences, the opportunity to provide the right patient with the right information regarding the right treatments also grows.
The era of participatory medicine—and research—is here. Are you ready? Is your brand? Is your communications partner? Klick here!