Who owns (or controls) health data?

Abstract

The ongoing debate on secondary use of health data for research has been renewed by the passage of comprehensive data privacy laws that shift control from institutions back to the individuals on whom the data was collected. Rights-based data privacy laws, while lauded by individuals, are viewed as problematic for the researcher due to the distributed nature of data control. Efforts such as the European Health Data Space initiative seek to build a new mechanism for secondary use that erodes individual control in favor of broader secondary use for beneficial health research. Health information sharing platforms do exist that embrace rights-based data privacy while simultaneously providing a rich research environment for secondary data use. The benefits of embracing rights-based data privacy to promote transparency of data use along with control of one’s participation builds the trust necessary for more inclusive/diverse/representative clinical research.