Cancer patients want to support research with clinical data
The use of clinical data for biomedical research purposes holds great potential. The willingness of patients to support this research with their own clinical data is a crucial prerequisite for advances in this field. Researchers at Heidelberg University Hospital (UKHD) and at the National Center for Tumor Diseases (NCT) Heidelberg have therefore conducted a representative study examining the attitudes and expectations of 838 cancer patients from Baden-Württemberg regarding the use of their clinical data.
Eva Winkler, Executive Director at the NCT Heidelberg, Head of the Translational Medical Ethics Section at the UKHD and member of the GHGA Board of Directors, is project leader of the study. She says, "The most important finding of our study was the high willingness of cancer patients to provide their clinical data for research purposes."
Of all respondents, more than 97 percent are generally willing to make clinical data available for biomedical research purposes; 63 percent of respondents without restrictions, and 34 percent under certain conditions. Patients cite high data security (58 percent), data use by as many research projects as possible (30 percent), and information about research results obtained from patient clinical data (25 percent) as the most important conditions for using clinical data.
Another important finding is patients' wishes about the type of consent. Three different models were evaluated: specific consent for each study, broad consent for data use in medical research in general, and default data use without explicit consent but with the ability to object to data usage at any time. Broad consent received the highest acceptance (59 percent), followed by standard data use (50 percent) and specific consent (39 percent). Respondents also have an 83 percent expectation of their fellow patients to support medical research with clinical data. At the same time, 90 percent of participants want their physicians to share clinical data for research. As a result of using their data in research, nearly all patients (94 percent) expect to improve care for future patients.
Anja Köngeter, research associate in the project and first author of the publication on the study, says: "The willingness of patients to make their clinical data available opens up great opportunities for biomedical research. To take advantage of these opportunities, we need to meet patients' needs and make the use of clinical data secure and trustworthy."
Creating a secure home for genomic data, as desired by patients, is the goal of GHGA. In addition to creating a technical infrastructure, GHGA has a strong team of ethical and legal experts working on a secure ethico-legal framework for storing and sharing genomic data. Eva Winkel and Christoph Schickhardt, authors involved in the study at hand, are part of the GHGA team. Among other things, they are involved in developing modules for consent forms and integrating the opinions and needs of patients into GHGA's governance.
This article is adapted from the NCT press release.
Anja Köngeter, Christoph Schickhardt, Martin Jungkunz, Susanne Bergbold, Katja Mehlis, Eva C Winkler: Patients’ Willingness to Provide Their Clinical Data for Research Purposes and Acceptance of Different Consent Models: Findings From a Representative Survey of Patients With Cancer. J Med Internet Res 2022 (Aug 25); 24(8):e37665. www.jmir.org/2022/8/e37665.