Population Informatics Lab, School of Public Health, Texas A&M University, College Station, Texas, USA.
Pharmacotherapy Outcomes Research Center, College of Pharmacy, University of Utah, Salt Lake City, Utah, USA.
J Am Med Inform Assoc. 2021 Jul 30;28(8):1746-1755. doi: 10.1093/jamia/ocab073.
While patients often contribute data for research, they want researchers to protect their data. As part of a participatory design of privacy-enhancing software, this study explored patients' perceptions of privacy protection in research using their healthcare data.
We conducted 4 focus groups with 27 patients on privacy-enhancing software using the nominal group technique. We provided participants with an open source software prototype to demonstrate privacy-enhancing features and elicit privacy concerns. Participants generated ideas on benefits, risks, and needed additional information. Following a thematic analysis of the results, we deployed an online questionnaire to identify consensus across all 4 groups. Participants were asked to rank-order benefits and risks. Themes around "needed additional information" were rated by perceived importance on a 5-point Likert scale.
Participants considered "allowance for minimum disclosure" and "comprehensive privacy protection that is not currently available" as the most important benefits when using the privacy-enhancing prototype software. The most concerning perceived risks were "additional checks needed beyond the software to ensure privacy protection" and the "potential of misuse by authorized users." Participants indicated a desire for additional information with 6 of the 11 themes receiving a median participant rating of "very necessary" and rated "information on the data custodian" as "essential."
Patients recognize not only the benefits of privacy-enhancing software, but also inherent risks. Patients desire information about how their data are used and protected. Effective patient engagement, communication, and transparency in research may improve patients' comfort levels, alleviate patients' concerns, and thus promote ethical research.
虽然患者经常为研究提供数据，但他们希望研究人员保护其数据。作为增强隐私保护软件的参与式设计的一部分，本研究通过使用患者的医疗保健数据来探讨患者对研究中隐私保护的看法。
我们使用名义小组技术对 27 名患者进行了 4 次焦点小组讨论，以探讨增强隐私保护的软件。我们为参与者提供了一个开源软件原型，以展示隐私增强功能并引出隐私问题。参与者提出了关于收益、风险和所需附加信息的想法。在对结果进行主题分析后，我们部署了在线问卷以确定所有 4 个组的共识。要求参与者对收益和风险进行排序。通过 5 分李克特量表对“所需附加信息”主题进行了重要性评分。
参与者认为，在使用隐私增强原型软件时，“允许最小披露”和“当前不可用的全面隐私保护”是最重要的收益。最令人担忧的是“除了软件之外还需要额外的检查以确保隐私保护”和“授权用户的潜在滥用”。参与者表示需要更多信息，其中 11 个主题中有 6 个主题的中位数参与者评分“非常必要”，并将“关于数据保管人的信息”评为“必不可少”。
患者不仅认识到隐私增强软件的好处，而且还认识到了固有风险。患者希望了解其数据的使用和保护方式。在研究中进行有效的患者参与、沟通和透明度可能会提高患者的舒适度，减轻患者的担忧，从而促进合乎道德的研究。
