Big Data in Medical Research – New Privacy Concerns for LGBT Patients?

In our blog post last week, we discussed the top three challenges for the LGBT community arising out of big data collection and analysis. While big data opens up new opportunities for different aspects of scientific research, the new wealth of information also poses unprecedented challenges for privacy. In the report Big Data and Privacy: A Technological Perspective, the President’s Council of Advisors on Science and Technology (PCAST) acknowledges that minority groups particularly could be negatively impacted by wrong inferences drawn from big data analysis. In the medical field, a big data project launched by the Patient-Centered Outcomes Research Institute (PCORI) will likely revolutionize medical research. In New York and ten other sites across the country, scientists are working on a database that integrates patient records from major hospitals and medical research centers, with collected information ranging from X-rays to blood tests. Hoping the database will help to better understand symptoms and diseases, scientists intend to use the aggregated and anonymized data for different research projects. According to the Washington Post, the database could include as many as 30 Million patient records by Fall 2015. For LGBT patients across the country, the database of health records raises new concerns over privacy of data. While all data is aggregated and anonymized before analysis, the PCAST report warns of potential “re-identification” through big data. As this “re-identification” could potentially allow for inferences about sexual orientation and gender identity, new concerns over discrimination by medical providers could arise. During our latest webinar Telemedicine and mHealth, we asked medical experts to share their perspectives on the potential impacts of big data research on LGBT patients. Dr. Matt Heinz, Director of Provider Outreach for the U.S. Department of Health & Human Services, thinks that big data holds great potential to identify health disparities within the LGBT community and could help direct resources that “address and mitigate those disparities.” James Turner, Vice President and Senior Public Policy Council of Health IT Now further pointed out that big data research could open up new opportunities for “getting people more access to care” as they could be better identified for medical trials. Despite these opportunities, Allyson Robinson, Vice President and Director of the LGBT Technology Institute, also discussed the privacy concerns arising out of big data, emphasizing that “we need to spend as much effort […] in figuring out how to protect the data that is associated with these data sets as we do figuring out how to use it.” With a first big data project in the medical field underway, we will soon find out whether our privacy concerns were justified. In the meantime, LGBT Tech will be monitoring the situation to ensure the scientists of PCORI make patient privacy a priority and consider the unique concerns of the LGBT community and other vulnerable groups Calendar Note: LGBT Technology Institute will be presenting this year at the Gay and Lesbian Medical Association’s (GLMA) 32nd Annual Conference Sept. 10th – 13th in Baltimore, MD. Register today!

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