Data Sharing and Reuse - Opinions and Attitudes of People with Oncological Disease: a narrative review

2025/04/12 by Reis, Sílvia, Sofia Marques Teixeira, Cátia
#Data sharing #Health data #Oncology #Opinions and attitudes

paper · doi:10.31877/on.2025.50.06

Abstract

Objective: Identify opinions and attitudes of people with cancer regarding sharing and reuse of health data. Method: A narrative review was conducted by searching articles in the MEDLINE (PubMed) and CINAHL (EBSCO) databases, including qualitative and quantitative research studies, no time or language restrictions applied. The reference lists of each selected article were also analysed and a manual search was performed to include potential additional studies. Results/conclusions: In general, people with cancer demonstrated a great willingness to share their health data; had some concerns, such as data privacy and security, discrimination, or misuse; were less likely to share data with government institutions and commercial entities; did not consider necessary to renew consent for future research, and would like to be informed of the most important results. Knowing these attitudes and opinions may contribute to public and political debate, as well as the development of an appropriate legislative framework.

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