The NIH’s All of Us Research Program celebrated its one-year anniversary today with new updates on enrollment progress, previews of its upcoming cloud-based data platform for health researchers and the public beta launch of an online tool for viewing aggregated, de-identified information about the program’s enrollees.
“I hoped [one year ago] that many would share this vision and help us achieve this common goal of building a research resource that would make possible the next great discoveries in health and medicine — and boy, have you answered that call,” NIH Director Dr. Francis Collins said today during a live-streamed event held in Washington, DC. “More than 230,000 people across this country have started the process of joining the All of Us Research Program, and more than 142,000 have completed the full protocol. That includes answering surveys, agreeing to share EHRs, giving physical measurements, donating biosamples and even linking their Fitbit data. That’s a lot of valuable data for researchers to explore and make those next great discoveries for health.”
Collins went on to note that the program — which aims to collect demographic, health behavior and genomic data from 1 million Americans — has also been meeting or exceeding its diversity goals, with more 80% of participants so far coming from communities “typically underrepresented in research,” and 50% representing racial and ethnic minorities. Additionally, according to materials provided to Luisbrandao by an NIH representative, the program has so far partnered with more than 2,000 community and provider organizations and held more than 1,500 events in overs 35 states to raise awareness of the initiative.
The result of all these surveys, sample collections and consumer wearable data sharing is the construction of what Collins said is already one of the largest and most diverse bodies of clinical data yet. Fortunately for researchers, the program is planning to release a “researcher workbench,” an up-to-date cloud platform that will include a variety of tools and filters for research collaboration, before the end of this winter.
“When that research workbench is made available, it will include data from upwards of 200,000 participants. It will include survey results, measurements and EHR data,” he said. “I anticipate that these hundreds of thousands of datapoints just by themselves will be useful to researchers.”
Playing a key role in the development of that research tool has been Verily. David Glazer, engineering director at at the Google subsidiary, said that the upcoming platform was designed with the requests of program participants and researchers in mind. The former of these groups told designers that they wanted their data well curated, protected from malicious use and available meaningful use by clinical researchers. The researchers themselves put in requests for a powerful, robust data analysis tool that could enable collaborations across teams.
“The traditional approach [was] when a researcher wanted to work on a set of data, they would have to download a copy of that data and work on it locally — which works, but unfortunately it means that everyone is working on their own copy in their own silo, and it makes it harder to work together,” Glazer said. “We said we have an opportunity now to take a cloud-centric approach, where instead of bringing data to researchers we will bring researchers to the data. We will create an environment where researchers can work together on a shared copy of the information, share tools with each other, only collaborate if they want but now it’s very easy.”
While this research tool may still be months away from its debut, the NIH did have another resource available to show off for the public. Starting today, researchers, program participants and amateur public health enthusiasts alike can access an open data aggregation browser through their web browser. By clicking through the website, users can view summary statistics of the growing All of Us database, all of which has been deidentified and organized based on common participant characteristics and EHR entries.
In addition to giving interested researchers a chance to view the study population and brainstorm potential projects for the full platform release, the NIH is asking users to explore and critique the browser so that it may be refined and made more accessible for the general public.
“What we need now is for the community to begin with these early, simple, crude tools and give feedback, so that we can make those better and better over time,” Eric Dishman, director of the All of Us Research Program, said during the event. “That is the way that the innovation process works, and the more diverse of the crowd that gives the feedback the better. Large numbers are important, but the diversity of that crowd is really important. … It’s a pretty challenging tool to use right now [and] you need a certain amount of visual literacy right now to go get this, so how do we make this even easier for people?”
This emphasis on data accessibility protection was a recurring theme for the NIH, which often highlighted its strategy of engaging program participants as public health stakeholders rather than research subjects. In particular, the project’s leaders said that they want to set new standards for privacy and trust within a research landscape that is increasingly interested in collecting and analyzing sensitive personal information.
“Here in the US, if not globally, we’re at a real inflection point around the collection of personal data and the trust of those who are collecting it. Part of building that trust is treating people as collaborators in caring and research, and not just subjects,” Deven McGraw, general counsel and chief regulatory officer at digital health record startup Ciitizen, and formerly the deputy director for health information at HHS' Office for Civil Rights, said during the event. “The All of Us research program is showing us that there is another way. The program is really way out in front of change that is coming — and I’m talking about change that will likely be as a result of new laws, but also the inevitable cultural revolution that the All of Us research program is out in front of. Doing the right thing before you’re forced to do the right thing will always put you at the right side of history.”
Much like NIH’s prior Human Genome Project, All of Us is a large-scale and expensive research initiative. While the dataset it promises could become the backbone of population health efforts for years to come, others have questioned whether the agency’s publicly-funded project will justify its cost and whether extensive promises of health data privacy will stand the test of time.
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