A group of university scientists have launched a project to build a community of researchers and participants by using technology to open up health data. The project “Open Humans Network” www.openhumans.org aims to break down barriers that make it difficult for willing individuals to access and share their data with researchers.
Researchers from Harvard www.harvard.edu, NYU www.nyu.edu, and the University of California San Diego http://ucsd.edu are backed by a $1 million investment with $500,000 contributed in separate grants from the Knight Foundation www.knightfoundation.org and the Robert Wood Johnson Foundation (JWJF) www.rwjf.org.
The aim for the researchers developing the Open Humans Network is to create an online system that will help match people who want to share their health data with researchers who would benefit from access to more information.
Researchers can join the Network by adding their studies to the network’s data-sharing framework. Individuals can join and participate in studies that are part of the framework by importing their data into a profile on the Network web site.
The 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. Plus the greater availability of shared data will enable scientists to conduct more studies and produce more robust and meaningful results.
Individuals who want to publicity share their data have to pass a test as part of the consent process to demonstrate that they understand the potential risks of sharing personal health data such as discrimination or embarrassment.
Researchers increasingly face problems in recruiting individuals to participate in studies. To remedy the problem at the launch, the site invited members to join three studies:
- American Gut to explore microbial diversity of the human body
- GoViral will profile viruses related to flu-like illnesses
- Harvard Personal Genome Project will collect genomic, environmental, and human trait data
“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,” said Madeleine Ball, the project’s lead investigator. “Despite the risks, we find many people genuinely want to open source themselves to contribute to the greater good.”