A group of top university scientists have launched a project to build a community of researchers and participants who want to benefit medical progress – by using technology to open up health data.
The “Open Humans Network,” created by researchers from Harvard, New York University and the University of California San Diego, is backed by a $1m investment from the John S. and James L. Knight Foundation, as well as the Robert Wood Johnson Foundation, each of which contributed $500,000 in separate grants.
The project aims to break down barriers that make it difficult for willing individuals to access and share their data with researchers.
To this end, the Open Humans Network has created an online system that helps match people who want to share their health data with researchers who would benefit from access to more information.
The project’s director, Jason Bobe (pictured), said: “Think of it as open-sourcing your body. There is tremendous potential for accelerating medical discoveries by helping individuals take their health and personal data out of data silos and making the data more broadly used.”
The Open Humans Network hopes to accelerate scientific discoveries by making far more data available. The premise is that more individuals will join scientific studies if they are empowered with the choice to share their data. And the greater availability of shared data will allow scientists to conduct more studies, and produce more robust and meaningful results.
Researchers increasingly face problems in recruiting individuals to participate in studies and participation rates in the US have been dropping, according to a 2011 report by researchers at Wayne State University School of Medicine.
At launch, the site invites members to join three studies:
- American Gut – exploring microbial diversity of the human body;
- GoViral – profiling viruses related to flu-like illness; and
- Harvard Personal Genome Project – collecting genomic, environmental and human trait data
With shared data from these studies, researchers hope to glean new insights only possible after combining the data, for instance, whether a person’s gut microbiome influences susceptibility to the flu.
The project’s leaders say they do not treat the sharing of private information lightly.
Madeleine Ball, the project’s lead investigator, explained: “We strongly care about the impact of sharing, which is why the project has a research component, including an ethics review board, to study the outcomes of such personal health data disclosure.
“Despite the risks, we find many people genuinely want to ‘open source’ themselves to contribute to the greater good.
Paul Tarini, senior programme officer at the Robert Wood Johnson Foundation, which is supporting the project, added: “Open Humans is one of the leaders among a new group of platforms that aim to change the way scientific discovery is made.
“We see their efforts to foster more collaboration between participants and researchers, including making it easier for participants to share data and to comment on early research concepts as important steps to help advance and accelerate medical breakthroughs.”
