This summer, National Institutes of Health (NIH) will launch a Participant Technologies Center to test and maintain connected sensor technologies as part of the White House’s Precision Medicine Initiative (PMI), NIH Director Francis Collins announced today at the Precision Medicine Summit. Vanderbilt University, with help from Verily (formerly known as Google Live Sciences) as advisors, will conduct a pilot to prototype a set of technologies and experiments, which would help the NIH understand how to successfully work with the large cohort.
In addition to working with advisors from Verily, Vanderbilt will work with the University of Michigan and the Broad Institute. Vanderbilt plans to enroll 50,000 volunteer participants but NIH’s overall goal is 79,000 volunteer participants by the end of this year.
“This team will explore the optimal approaches and systems for engaging, enrolling, and retaining participants in the PMI cohort,” Collins said. “The pilot will start in the near future. The initial volunteers will help establish and test innovative methods and technologies for enabling user-friendly data collection and robust participant engagement. This approach will help us learn how to create durable relationships with volunteers who will be our true partners in the research process.”
Collins said that the NIH also plans to launch a technology center and take a few other steps to prepare for the cohort by this summer.
“This includes establishing a coordinating center to manage the overall project,” he said. “A network healthcare provider organizations that will engage, enroll, and support data collection for a large segment of the program’s participants — by the way a large number of health care provider organizations have already applied for the change to take part. We will establish a bio bank to store and manage biological specimens provided by participants. And we will establish a Participant Technology Center to harness the latest opportunities in mobile phone and sensor technologies.”
A grant description published towards the end of 2015 listed four objectives of the Participant Technologies Center. The first is to develop, test and maintain mobile apps that help researchers with enrollment, consent, data collection, and communication. One way the NIH said it wants to collect data is to use “home sensors and mHealth technologies to correlate body measurements and environmental exposures with health outcomes”.
The second objective is to come up with alternatives for participants who do not have a smartphone. The third is to collect and manage the data that is generated from whichever technologies are used. And the last is to work with technology companies to increase access to smartphones and passive sensor technologies for certain participants.
There are at least four other healthcare organizations that have announced precision medicine projects that use digital health technologies and are aligned with the White House’s initiative. These groups aren't necessarily integrated with any of the federal government's specific PMI projects, but their work is also furthering the overall goal of PMI.
The White House highlighted a number of these parallel initiatives today, including: Ochsner Health System partnered with Apple and Epic to expand its remote monitoring programs, currently focused on heart failure and hypertension, to other conditions.
Another organization, Sage Bionetworks, announced that in March, participants in its mPower study, focused on Parkinson’s disease, will be able to share their data easily with a broader group of researchers. Meanwhile, St. Joseph Health, a health system, partnered with Hart, Allscripts, and Meditech, to provide patients with access to their data using the HartOS API.
Health data platform company Validic said this year it would work with EHRs, hospital systems, and pharma companies to help patients share their health data. This would include an opt-in form that allows patients to donate their health data to science.
Finally, Cornell Tech, Open mHealth and Android developer touchlab announced that the companies will release ResearchStack, an open source framework that allows Android users to participate in app-based research studies, on April 15.
The government's $215 million Precision Medicine Initiative was first announced last year during President Obama’s State of the Union Address. About $130 million of the funding went to the NIH to develop a research cohort of at least one million people that would share health data to help researchers grow their understanding of preventive health and disease.
Six months later, the NIH announced that the organization was considering using smartphones and wearables for data collection and sought out feedback fromthe industry about using health sensing technologies for the initiative.