Health data research on sudden cardiac arrest: perspectives of survivors and their next-of-kin.

ABSTRACT:

Background

Consent for data research in acute and critical care is complex as patients become at least temporarily incapacitated or die. Existing guidelines and regulations in the European Union are of limited help and there is a lack of literature about the use of data from this vulnerable group. To aid the creation of a patient-centred framework for responsible data research in the acute setting, we explored views of patients and next-of-kin about the collection, storage, sharing and use of genetic and health-related data for observational research.

Methods

We conducted qualitative interviews (n = 19) with Dutch sudden cardiac arrest survivors who donated clinical and socio-economic data and genetic samples to research. We also interviewed their next-of-kin. Topics were in

SUBMITTER: Bak MAR 

PROVIDER: S-EPMC7844916 | biostudies-literature | 2021 Jan

REPOSITORIES: biostudies-literature