Franklin Elizabeth F, Nichols Helen M, House Linda, Buzaglo Joanne, Thiboldeaux Kim
Cancer Support Community, Washington, DC, USA.
Concerto HealthAI, Philadelphia, PA, USA.
J Patient Exp. 2020 Dec;7(6):1115-1121. doi: 10.1177/2374373520923837. Epub 2020 May 8.
Sharing data is critical to advancing science, improving health, and creating advances in the delivery of health care services. The value of sharing data for cancer research purposes is well established, and there are multiple initiatives under way that address this need. However, there has been less focus on cancer patient perspectives regarding the sharing of their health information for research purposes. This study examined cancer patient perspectives on the sharing of de-identified health data for research purposes including both data from medical records and mobile applications. This cross-sectional study used survey methodology to collect data from cancer patients/survivors (N = 677). Overall, we found that participants were largely willing (71%) to share de-identified medical data and were most motivated (88%) by a desire to help other cancer patients. Patients were less likely to be comfortable sharing mobile application data (34%). It is vital that we understand patient perspectives on data sharing and work with them as partners, valuing their unique contributions, and attending to their preferences.
数据共享对于推动科学发展、改善健康状况以及在医疗服务提供方面取得进展至关重要。为癌症研究目的而共享数据的价值已得到充分确立，并且正在开展多项举措来满足这一需求。然而，对于癌症患者就出于研究目的共享其健康信息的看法关注较少。本研究调查了癌症患者对于出于研究目的共享去标识化健康数据的看法，这些数据包括来自医疗记录和移动应用程序的数据。这项横断面研究采用调查方法从癌症患者/幸存者（N = 677）中收集数据。总体而言，我们发现参与者大多愿意（71%）共享去标识化的医疗数据，并且最主要的动机（88%）是希望帮助其他癌症患者。患者对于共享移动应用程序数据的接受度较低（34%）。我们必须了解患者对数据共享的看法，并与他们作为合作伙伴共同努力，重视他们的独特贡献，并关注他们的偏好。
