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Majority of Germans ready to donate data for medical research

Long-term consent preferred

27 August 2019. 79 percent of the German population (more than three quarters) would be willing to donate their personal health data anonymously and free of charge for medical research. This is the result of a current representative Forsa survey commissioned by the TMF.

"The willingness of people to contribute to better diagnostics and care by providing their health data is very high. Researchers and policy-makers now have to provide the legally secure and trustworthy environment for such a research data donation. This can only succeed with the involvement of patients", explained Sebastian C. Semler, Managing Director of TMF on 27 August 2019 in his presentation of the survey results at the workshop "Health Data for Medical Research: How Can Patients Participate" of the Medical Informatics Initiative in Berlin.

When asked how and for how long their personal health data could be used for medical research after their data donation, 73 percent of respondents were in favour of a long-term use of at least five years. 56 percent answer that their health data can be used on an unlimited time basis for medical research. Only 27 percent want to be asked for their consent to each individual research project.


The answers from chronically ill and healthy patients show no significant differences. Among men, the proportion of those who would donate their data to medical research was slightly higher (84 percent) than among women (75 percent).

A total of 1,006 people aged 18 and over in the Federal Republic of Germany were surveyed by the forsa.omninet survey panel between 13 and 18 August 2019.

 

  1. Sebastian C. Semler (TMF e.V. Berlin): "Results of the TMF-FORSA Survey on Patients' Attitudes towards Data Donation in Germany



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