“Do scientific researchers really want to sit down with a bunch of tech engineers?”
That was my first thought when PJ Jain, Vibrent CEO and Principal Investigator of the NIH (National Institutes of Health) All of Us Research Program, came to me with the idea for creating a research-focused hackathon.
Hackathons are typically for the computer programmer set – events where teams get together, collaborate on a project, and come away with a solution to a problem most of us never knew existed. So, what would that have to do with health research?
Quite a lot, actually.
PJ’s idea was to bring together “the scientific community, the research community, and technology folks to start a dialogue around how digital methods can help research programs move towards more innovation.”
This was a unique opportunity for researchers to impact software from the development stage. That doesn’t happen often!
My expectation for the Hackathon was that we were going to bring a bunch of people together and they would sit and wait for us to tell them what to do. I was completely wrong.
Now that the Hackathon is over, I cannot believe how easy it was for them to collaborate. The participants appeared to be aching to get together, without knowing it. My experience was like walking into a room with people who were already buzzing with ideas in their heads. We just opened the door for them, and the ideas flew like fireworks.
As the day rolled on, I realized there was much for the rest of the health research community to learn from the innovators that day – and here are the 5 most important takeaways from our inaugural Hackathon.
We brought together a group working on the All of Us Research Program made up of Vibrent engineers, designers from GoInvo, and research scientists from Harvard Medical School, Vanderbilt University, UC Irvine, University of Miami, North Carolina Central University, Northwestern University, and others. Our goal was to problem solve the barriers in digital health technology, since the All of Us has overcome these barriers to create the largest cohort program in history, this team had the experience to brainstorm creative solutions.
We found that these groups were hungry to collaborate with one another; transforming initial ideas into prototyped solutions. Our CEO is passionate about addressing this disconnect between the scientific community and technology community and actively working to include researchers, scientists, and technology folks together, just like this Hackathon did. In his words, “we forget that researchers live in a real-world environment every day. So, it is wonderful to get their perspectives and collaboration to inform what we should focus on and constantly remind us that it is not just about building an app for the top 10% of the population, it is really about bringing health research to the masses.”
People from all backgrounds, races, socioeconomic statuses and ages have a varying degree of digital literacy and access but they all need to interface with healthcare and research studies.
We had the privilege of having Geoff Ginsburg, the Chief Medical and Scientific Officer for the All of Us Research Program, give a keynote talk where he expressed a sense of urgency toward closing the digital divide. He stated, “We want to make sure that even the most poorly educated, or people living in rural communities, who really want to make headway with their health have access to these technologies, understand how to use them and how to act on the results.”
We need to continue to make technology that is accessible, easy to use, and highly secure. If only the ‘haves’ can give their data, then the health research is going to be biased in its results. So, we must work together to close the digital divide to enable equity in research and to have a greater impact on individuals’ health.
Study participants are more than their vitals. Their active involvement and retention are essential for medical research to move forward and their own health journey.
NIH Program Officer for the Participant Technology System Center was actively involved in keeping participants at the center of the solutions being created. He revealed, “We’ve talked a lot about value for participants. We want the opportunity for participants to get to see the achieved value of the program and start to understand that not only have they been contributing to the program by investing their time and energy but that there is something coming on the back end of that as the researchers are starting to access the data, to do follow-up studies, and hopefully make discoveries.”
We had designers on each team to bring to life the solutions through practical and designed components. Jen Patel-Sobus, a designer and engineer at GoInvo shared her experience, “I am here because we think it is important to include design in these collaboration discussions. I tried to capture their ideas, and frame them in ways that we could discuss more systematically and visually, after all the picture speaks a thousand words. Then, as we got closer to refining our idea, I rapidly created some high-level wireframe designs to give them something to react to and aspire to and see it come to life.”
We must use visual design elements in a relevant, simple, and digestible way when we return information to study participants. This helps them see the value in participating and offers practical suggestions for them to take charge of their own health.
Real change comes from the sharing of information with all involved. The trick to doing this is to pull back the curtain and communicate about what the problems are, and which updates are already being implemented, so we can create room to innovate new solutions.
Each group produced multiple solutions. By having diverse stakeholders present, we got to share with groups which of their ideas were already in motion to encourage their efforts and shift the focus to their other ideas. Amy Taylor, was a member of the digital divide group and voiced her excitement about this transparency, “Knowing that our ideas are really in alignment with both the NIH and Vibrent is truly exciting but then also seeing the ones that aren’t really on the road map right now and thinking about strategies to make those really something that is important to the larger consortium really excites and energizes me.”
When the Hackathon ended, the feeling in the room was positive and hopeful. These two days mattered. Getting this diverse group of people from all over the country into a room brought acceleration and efficiency to these ideas.
Our CEO PJ summarized my feelings when he said, “It was a really enlightening event. People enjoyed it a lot and you could see the creative energy coming out. You could see the commitment and the passion of the teams coming out as they wanted to solve the problems. We plan to replicate this and expand it in the future.”
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