Secondary research use of personal medical data: patient attitudes towards data donation.

ABSTRACT:

Background

The SARS-CoV-2 pandemic has highlighted once more the great need for comprehensive access to, and uncomplicated use of, pre-existing patient data for medical research. Enabling secondary research-use of patient-data is a prerequisite for the efficient and sustainable promotion of translation and personalisation in medicine, and for the advancement of public-health. However, balancing the legitimate interests of scientists in broad and unrestricted data-access and the demand for individual autonomy, privacy and social justice is a great challenge for patient-based medical research.

Methods

We therefore conducted two questionnaire-based surveys among North-German outpatients (n = 650) to determine their attitude towards data-donation for medical research, implemente

SUBMITTER: Richter G 

PROVIDER: S-EPMC8672332 | biostudies-literature | 2021 Dec

REPOSITORIES: biostudies-literature