Building The Participant Interface For All Of Us And Keeping Users Connected
By Allison Proffitt
August 22, 2018
When the National Institutes of Health launched open enrollment for the All of Us Research Program in May, an ecosystem of partners joined the festivities. Among them, Vibrent Health, which won the Participant Technology Systems Center award, versioning its Learning Health System to guide over one million participants through the process of recruitment, enrollment, engagement, and return of health information.
The list of partners is long, including Mayo Clinic, Partners HealthCare, University of Pittsburgh Medical Center, UC San Francisco, Northwestern University, Henry Ford Health System, University of Southern California, Vanderbilt University Medical Center, the University of Miami, the University of Alabama, Columbia University, Cherokee Health Systems, Veterans Health Administration, the University of Michigan, Broad Institute, Walgreens, WebMD, Quest Diagnostics, Blue Cross Blue Shield, Scripps Translational Science Institute and Sage Bionetworks. Each group is responsible for some component of the All of Us program, with most receiving five-year awards.
“Our responsibility is to design, develop, conceptualize, build, operate, monitor anything that is participant-facing,” Vibrent Health CEO and Founder Praduman Jain explains. “As participants move through the journey from information to pre-enrollment to enrollment and now they’ve created an account, all of that is happening through a Vibrent-created platform.”
It’s a big undertaking, especially for someone who didn’t come from a healthcare background. “I’m not a healthcare guy; I didn’t bring healthcare experience,” Jain says candidly. Instead, he founded Vibrent in 2009 on a foundation of technology, media, telecom and consumer electronics. “What I did bring was large systems experiences, consumer electronics experiences, engagement experiences.” Those areas, Jain believes, have a lot in common with where the healthcare system is headed: engaging a broad set of consumers and keeping them plugged in.
From the beginning, Vibrent built technology platforms for participant engagement and disease management. “Over a five-year period, we’ve built and tested a technology platform that’s very similar—of course at a very small scale—to what the All of Us program needed,” Jain says.
Vibrent’s Learning Health System product uses digital technologies, such as iOS and Android mobile apps and wearable devices, to ingest data from genomic analysis, environmental exposures, electronic health records, behavior and lifestyle factors and other health determinants. The system then returns knowledge and insights to participants as well as combines longitudinally-collected data from broad sources. In collaboration with program partners, these data sets will be made available to enable research scientists to conduct specialized studies and make discoveries that can advance precise prevention, detection and treatment of a variety of health conditions.
All of Us has enrolled about 85,000 participants in the first year of its beta launch, and those participants are using the Vibrent platform. “The only way that could have happened is that to build cyber-secure platform that has the privacy elements in it and ease of registration, ease of enrollment, ease of technologies that are utilized by the participants to enroll,” Jain says.
Ensuring high fidelity, clean data is a major focus, Jain explained. Data collection is, by definition, a lengthy process and Vibrent is working to minimize roadblocks that would slow someone down, or encourage them to drop off. That means prioritizing ease of use for everyone.
“We are going after diversity in addressing underrepresented in biomedical research populations. Reaching people where they are, and being relevant to people’s habits as well as use of technology.” That means building web interfaces as well as mobile apps for Android and iOS. It means having a text messaging option (that can be turned off).
But beyond just getting volunteers into the system, sustained retention is the goal, Jain says. “The goal and expectation is that this will go on for a very long time, 20-50 years. This is being viewed as a national resource.”
So part of Vibrent’s job is to keep participants engaged in a longitudinal study, but in some ways, All of Us is in uncharted waters: tracking an extremely large cohort over many decades. Jain explains that the program is strategically linking engagement and continual data collection.
Surveys and assessments are the first data collected from new enrollees and serve as a baseline. As physical measurements, biospecimens, electronic health records, sensor data, sequencing data, and more data types are added on, data collection serves as an opportunity for participant connection.
“As those datasets get added, there is analytics behind it. There is also new opportunity to return information back to participants,” Jain explains. “Through all these added functionality modules, there are multiple reasons to connect back with participants, to message them, and to bring them back.”
Delivering value will, hopefully, keep volunteers engaged. One way to do that is via Snap Questions, Jain says. Questions are presented to participants from a huge bank of scientifically-validated options. When participants answer, they’ll get aggregated results back showing how people like them often answer.
“The program is taking a different approach. Give everyone back their own individual data; give them insights about their own health. Also, link them to communities so they get and learn from population-level data,” Jain says.
All of this must happen in a technologically flexible platform. Consumer applications don’t stay the same year after year, Jain points out, and neither should this one.
“We continue to evolve technologies and applications, because this is long term,” Jain says. “Our big focus is building technology platforms that are adaptable, scalable, can be changed rapidly and can be evolved rapidly. And that they’re able to provide good user interfaces, user experiences for returning information and returning value back to participants.”
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