Abstract
BackgroundThe 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.MethodsWe therefore conducted two questionnaire-based surveys among North-German outpatients (n = 650) to determine their attitude towards data-donation for medical research, implemented as an opt-out-process.ResultsWe observed a high level of acceptance (75.0%), the most powerful predictor of a positive attitude towards data-donation was the conviction that every citizen has a duty to contribute to the improvement of medical research (> 80% of participants approving data-donation). Interestingly, patients distinguished sharply between research inside and outside the EU, despite a general awareness that universities and public research institutions cooperate with commercial companies, willingness to allow use of donated data by the latter was very low (7.1% to 29.1%, depending upon location of company). The most popular measures among interviewees to counteract reservations against commercial data-use were regulation by law (61.4%), stipulating in the process that data are not sold or resold (84.6%). A majority requested control of both the use (46.8%) and the protection (41.5%) of the data by independent bodies.ConclusionsIn conclusion, data-donation for medical research, implemented as a combination of legal entitlement and easy-to-exercise-right to opt-out, was found to be widely supported by German patients and therefore warrants further consideration for a transposition into national law.
Highlights
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
The ever-increasing efficiency of digital technologies bears great potential for abridging the way from primary data generation to secondary data use, but it brings with it the responsibility to adapt these processes to an increasing demand for patient autonomy and Richter et al BMC Medical Ethics (2021) 22:164 privacy as well as for social justice
The SARS-CoV-2 pandemic has highlighted that enabling efficient access, integration and use of patient data is an indispensable prerequisite, for promoting translation and personalisation as the two major goals of medical research, and for fostering public health with regard to disease monitoring, prevention and the evaluation of political measures
Summary
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. The SARS-CoV-2 pandemic has highlighted that enabling efficient access, integration and use of patient data is an indispensable prerequisite, for promoting translation and personalisation as the two major goals of medical research, and for fostering public health with regard to disease monitoring, prevention and the evaluation of political measures. Balancing these concerns represents a great challenge for patient-based data-driven medical research. Patient consent is mostly obtained in clinical care situations, which is problematic for a number of reasons
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