The complexity and differences in data-protection laws are making it difficult for researchers to use massive volumes of individual-level data, so-called big data, for improving public health and clinical outcomes, according to Cason Schmit, JD, an assistant professor at the Texas A&M University School of Public Health in College Station, Texas, where he is director of the Program in Health Law and Policy. If public health and health care in general in the US are to benefit optimally from big data, the country needs to abandon its current approach to protecting data.
“A comprehensive data protection law that permits data to be used for public health and research is needed to truly understand the impact of social determinants of health because these data are scattered and protected by different laws with different standards,” Schmit said.
Without a comprehensive data protection law, application of big data to medical research and public health will face substantial barriers, according to Schmit. “HIPAA is often unfairly targeted as a barrier to science and public health. In fact, HIPAA is among the few federal data protection laws with robust provisions allowing disclosures of identifiable information for both public health and research purposes,” Schmit said.
Overly Protective Policies
Impediments to big data use include adoption of highly conservative policies that restrict otherwise completely legal data uses. Organizations might adopt such policies because they do not fully understand HIPAA provisions or wish to simplify compliance with a complex law with overly broad restrictions. Another reason may be overprotection of commercially valuable and personally sensitive information. “While some organizations might publicly justify these protections as serving their patients, our research shows that the public is comfortable with their data being used to promote social good, like research and public health,” Schmit said.
Recently, Schmit led a study that surveyed 504 nationally representative participants who were asked how comfortable they were with different big data use scenarios. The results of the study, published in the Journal of Medical Internet Research, suggested that the public strongly prefers that big data be used for public health and research purposes over profit-driven, marketing, or crime-detection activities.
This article originally appeared on Renal and Urology News