Year: 2024
Type: article
Abstract: The Data-Sharing ImperativeBeginning in 2023, patient information used in research will be shared more often and with more people than ever before in the United States, as researchers comply with a federal mandate and calls from leading medical journals to share data more openly.[1][2][3] This is an important step toward personalized medical care, but a single step on a complicated road.Data-sharing occurs at multiple points as the field of medicine advances, from patients, to hospitals, to researchers, but is falling short of what is needed.Currently, a limited amount of health care data is collected from large groups of people, which is then partially shared with researchers.However, key information is left behind because it is either buried within unstructured text across redundant and superfluous charting, ambiguously documented, or scattered in fragments across disconnected locations.Without data such as molecular profiling of patients and their diseases, environmental factors, and social determinants of health, investigators are left to solve a puzzle they can only partially see.We must increase the breadth and depth of shared information, in addition to sharing it more often.However, increasing the granularity of shared data significantly increases privacy risks.In theory, most patients could be reidentified using surprisingly few pieces of anonymous information.4 We explore the evolving benefits and risks of sharing health care data for research in 2023 so that a better understanding of care provided today can lead to better care tomorrow. The Privacy Challenge of the Digital Data EnvironmentJust as a path to personalized medicine is coming into view, a perfect storm of privacy-risk is evolving.The previously mentioned calls and mandates for increased
Language: English
Subfield: Information Systems
Field: Computer Science
Domain: Physical Sciences
Open Access status: bronze
OpenAlex ID: W4390581131