- Patient data security should be a top priority for healthcare providers, even as new technology is implemented that gives individuals more control over their records. A new online platform though could potentially put some of that information at risk.
Researchers from Harvard, New York University and the University of California San Diego recently launched the “Open Humans Network,” which aims to increase information sharing between individuals and researchers. People who want to share their data are matched with researchers through an online platform. The goal is to “accelerate scientific discoveries by making far more data available,” according to a statement on the Open Humans launch.
Project Director Jason Bobe, who also runs the network’s parent organization, PersonalGenomes.org, said it is similar to individuals open sourcing their bodies.
“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,” Bobe said.
Participants can volunteer information about their gut bacteria, genomes and other biological data. The information will remain on the site and could be picked up by any researcher. While participants can delete their profiles or certain data on their profiles at any time, there will still be copies of public data made by third parties.
The Open Humans website also states that participants should remember that their data is public, and third parties could find out their identities even if they take measures to remain anonymous.
“Even if you use a pseudonym for Open Humans, your data could be connected to your identity,” the website states. “The risk of this varies depending on the type of data, but it is often surprisingly easy to identify people.”
National Association of Data Protection and Freedom of Information Officers (NADPO) Chairman Jon Baines told Newsweek that the program does seem to comply with data protection laws by making it clear to people what they are signing up for. However, genomic data is highly sensitive, he said, and individuals could potentially be at risk of the information being abused.
“What will prevent, say, insurance companies from using the information?” Baines asked. “What if malicious groups or individuals use the data to harass or intimidate individuals?”
Ensuring patient data security while allowing researchers to have access to such information is an increasingly popular topic in healthcare. Toward the end of last year, the American Medical Informatics Association (AMIA) said in a letter to state Representative Fred Upton that HIPAA should be updated to allow for exemptions in terms of access to patient’s PHI, specifically for “observational or data research.”
“AMIA ultimately works to enhance human health and health care delivery through the transformative use of information and communications technology,” wrote AMIA Board Chair Blackford Middleton and Vice President of Policy and Development Ross Martin. “To facilitate the discovery, development and delivery of new treatments and cures, AMIA believes that we must develop a ‘learning health system’ in which the data and information generated during routine delivery of health care is leveraged across clinics, hospitals and integrated networks…”