Infographic of the Day: Data, Data, Everywhere
Publicly-funded datasets offer some of the most exciting growth opportunities for health services researchers interested in evaluating effectiveness, quality, and value in health care. However, data governance--the rules that protect the privacy of personal health information while allowing appropriate access by researchers--has lagged behind. A special issue of AcademyHealth’s eGEMs journal, "Trust 2.0: Data Governance to Support Health and Discovery," is devoted to these pressing issues of privacy, security, and patient engagement. Guest editor and LDI Senior Fellow John Holmes notes, "This collection of eGEMs papers illustrates data governance complexities, challenges, and opportunities, particularly in the context of the current health systems landscape and the health research enterprise."
In one of these papers, LDI Senior Fellow Jalpa Doshi and colleagues reviewed data access policies for several publicly-funded state and federal datasets to analyze how privacy policies promote or limit research. They discuss the variations across policies, agencies, and datasets. They document numerous direct and indirect hurdles to use of data, including complex application procedures, high user fees, and prolonged wait times for data delivery. The following infographic tells the story.
[h/t Judith Long]
Source: National Pharmaceutical Council