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UNOS to study data collection related to social determinants of health

UNOS to study data collection related to social determinants of health

United Network for Organ Sharing has embarked upon a feasibility study involving the collection of data related to social determinants of health (SDoH). SDoH are conditions associated with where people live and work, and researchers have observed disparities in health outcomes in communities with poor SDoH conditions. Some examples of these conditions include:

  • Access to safe housing
  • Income
  • Education
  • Job opportunities
  • Health care services

A key strategic goal of UNOS is to provide equity in access to transplants, and that includes analyzing data on vulnerable populations. Because the Organ Procurement and Transplantation Network does not currently collect extensive data specific to SDoH, research has been limited into what SDoH-related health disparities may exist for candidates on the waitlist and for transplant recipients.

The SDoH project aims to determine the feasibility and suitability of acquiring aggregated third-party data in order to understand the impact of SDoH on transplantation. Third-party data aggregators are able to collect a variety of data at the individual level that healthcare professionals typically do not, which may relate to SDoH. For specific analyses, third-party data could be linked to OPTN transplant data to provide insight on the SDoH factors of the organ waitlist and transplant recipient list. This data will not be used to augment the OPTN database.

The feasibility project involves three major phases:

  • A data evaluation phase, to determine what SDoH data elements the OPTN should attempt to collect
  • A data acquisition phase, to pursue external vendors who are able to provide SDoH data and who have expertise in complex data linkages
  • A data analysis phase, to assess the quality of SDoH data acquisition to inform future SDoH data collection projects

An overview of this project and its goals has been presented to the OPTN Data Advisory Committee, the Ethics Committee and the Minority Affairs Committee. During the project, UNOS researchers will involve the committees in understanding the findings and determining the scope of future work. There will be a final presentation to the committees at the conclusion of the project.

The results and analysis of these three phases will help define the potential benefits and challenges involved with SDoH data collections. If third-party SDoH is found to be appropriate for use by the OPTN, this project will inform future studies that examine relationships between SDoH factors and waitlist and transplant outcomes.

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