Data Trusts, Health Data, and the Professionalization of Data Management

Paper by Keith Porcaro: “This paper explores how trusts can provide a legal model for professionalizing health data management. Data is potential. Over time, data collected for one purpose can support others. Clinical records at a hospital, created to manage a patient’s care, can be internally analyzed to identify opportunities for process and safety improvements at a hospital, or externally analyzed with other records to identify optimal treatment patterns. Data also carries the potential for harm. Personal data can be leaked or exposed. Proprietary models can be used to discriminate against patients, or price them out of care.

As novel uses of data proliferate, an individual data holder may be ill-equipped to manage complex new data relationships in a way that maximizes value and minimizes harm. A single organization may be limited by management capacity or risk tolerance. Organizations across sectors have digitized unevenly or late, and may not have mature data controls and policies. Collaborations that involve multiple organizations may face coordination problems, or disputes over ownership.

Data management is still a relatively young field. Most models of external data-sharing are based on literally transferring data—copying data between organizations, or pooling large datasets together under the control of a third party—rather than facilitating external queries of a closely held dataset.

Few models to date have focused on the professional management of data on behalf of a data holder, where the data holder retains control over not only their data, but the inferences derived from their data. Trusts can help facilitate the professionalization of data management. Inspired by the popularity of trusts for managing financial investments, this paper argues that data trusts are well-suited as a vehicle for open-ended professional management of data, where a manager’s discretion is constrained by fiduciary duties and a trust document that defines the data holder’s goals…(More)”.