Section for Translational Medical Ethics, Department of Medical Oncology, National Center for Tumor Diseases, Heidelberg University Hospital, Heidelberg, Germany.
Section for Translational Medical Ethics, Department of Medical Oncology, National Center for Tumor Diseases, German Cancer Research Center, Heidelberg, Germany.
PLoS One. 2024 Feb 13;19(2):e0274032. doi: 10.1371/journal.pone.0274032. eCollection 2024.
For biomedical data-driven research purposes, secondary use of clinical data carries great but largely untapped potential. Physicians' attitudes and their needs towards secondary data use are essential to inform its practical and ethically sound implementation but are currently understudied.
Therefore, the objectives of the study are to assess physicians' (i) general attitudes and concerns, (ii) willingness to adapt workflows and to make data available for secondary use, (iii) group-specific conditions toward implementation of secondary use and associated concerns of physician-scientists and purely clinical physicians.
We developed an online survey based on a literature review and an expert interview study. Physicians in private practice and at two large German university hospitals were surveyed from May 2021 until January 2022.
In total, 446 physicians participated in the survey. 96% [380/397] of all physicians reported a positive attitude towards secondary use; 87% [31/397] are in-principle willing to support secondary use of clinical data along with a small proportion of physicians with fundamental reservations. Secondly, the most important conditions for adapting workflows were funding of additional time and effort for research-adequate documentation (71% [286/390]) and the most important condition for providing patients' clinical data was reliable protection of patients' privacy (67% [254/382]). Thirdly, physician-scientists were more likely than purely clinical physicians to request additional funding for research-adequate documentation as a precondition for support (83% vs 69%, P = .002) and the privilege to conduct research with their own patients' clinical data before other researchers are allowed to (43% vs 11%, P < .001); while purely clinical physicians more frequently require reliable protection of patient privacy (76% vs 62%, P = .007) and monetary compensation (45% vs 25%, P < .001).
Since this study presents high in-principle willingness of physicians to support secondary use along with little general concerns, it seems essential to address physicians' group-specific conditions toward secondary use in order to gain their support.
出于生物医学数据驱动研究的目的，二次利用临床数据具有巨大但尚未得到充分利用的潜力。医生对二次数据使用的态度及其需求对于告知其实际和合理的实施至关重要，但目前对此研究不足。
因此，本研究的目的是评估医生的：（i）对二次使用的一般态度和顾虑，（ii）愿意调整工作流程并提供数据进行二次使用，（iii）对实施二次使用的特定群体条件和医生科学家与纯粹临床医生的相关顾虑。
我们基于文献回顾和专家访谈研究开发了在线调查。从 2021 年 5 月至 2022 年 1 月，对私人诊所和两家德国大型大学医院的医生进行了调查。
共有 446 名医生参与了调查。96%[380/397]的医生对二次使用持积极态度；87%[31/397]原则上愿意支持临床数据的二次使用，而少数医生对此持保留意见。其次，调整工作流程的最重要条件是为研究充分记录工作提供额外的时间和资金（71%[286/390]），提供患者临床数据的最重要条件是可靠保护患者隐私（67%[254/382]）。第三，与纯粹的临床医生相比，医生科学家更有可能要求为研究充分记录工作提供额外资金作为支持的前提条件（83%比 69%，P =.002），并要求在其他研究人员获准之前，有权对自己的患者临床数据进行研究（43%比 11%，P <.001）；而纯粹的临床医生更频繁地要求可靠保护患者隐私（76%比 62%，P =.007）和货币补偿（45%比 25%，P <.001）。
鉴于本研究显示医生对支持二次使用具有高度的原则性意愿，且普遍顾虑较小，因此似乎必须解决医生对二次使用的特定群体条件，以获得他们的支持。
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