Secondary Use of Research Data: A Review of Availability and Utilization of Public Use Files and Initial Steps for the Development of a Process to Facilitate Medical Research Data Donation

Creators: Holl, Felix and Rschke, Louisa and Müller-Mielitz, Stefan and Fotteler, Marina L. and Swoboda, Walter
Title: Secondary Use of Research Data: A Review of Availability and Utilization of Public Use Files and Initial Steps for the Development of a Process to Facilitate Medical Research Data Donation
Item Type: Conference or Workshop Item
Event Title: (Proceedings of the) 2019 IEEE/ACS 16th International Conference on Computer Systems and Applications (AICCSA)
Event Location: Abu Dhabi, UAE
Event Dates: 3-7 November 2019
Projects: DigiHealth
Date: 16 March 2020
Divisions: Gesundheitsmanagement
Abstract: Health data are being generated in large quantities. However, these data are rarely used beyond their primary purpose in comparison to other industries. Main barriers are privacy and ethical concerns and the fact that medical data are scattered across institutions. The study investigated the availability and utilization of public use files (PUF) of primary research data as well as ethical and legal barriers limiting the donation of medical research data for secondary use in preparation for the development of a process model to foster medical data donation. First, the availability and utilization of PUFs from primary research data were investigated through a selective literature review. Secondly, ethical and legal barriers that are limiting the donation of medical research data for secondary use were investigated. A simplified process model was developed based on an initial literature review. The process model was used to identify questions that need to be addressed to facilitate data donation. Solutions to address the identified questions will be developed through another review of the literature and expert interviews. An enhanced data donation process model will be developed and refined through a second iteration. The review of PUFs has shown that the availability and utilization of research data through public use files for secondary use is limited. As a means to facilitate and foster secondary data use, the researchers advocate for a simplified data donation process for medical research data. The results of the first step of the project showed that several ethical, legal, and social-technical questions need to be addressed to implement a simplified data donation process. The project s next steps will include the development of solutions to those barriers will be developed and included in an improved concept of a data donation process model.
Citation:

Holl, Felix and Rschke, Louisa and Müller-Mielitz, Stefan and Fotteler, Marina L. and Swoboda, Walter (2020) Secondary Use of Research Data: A Review of Availability and Utilization of Public Use Files and Initial Steps for the Development of a Process to Facilitate Medical Research Data Donation. In: (Proceedings of the) 2019 IEEE/ACS 16th International Conference on Computer Systems and Applications (AICCSA), 3-7 November 2019, Abu Dhabi, UAE.

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