Abstract

Objective

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.

Materials and Methods

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.

Results

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.”

Conclusions

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.

中文翻译：

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通过参与式设计识别和优先考虑使用隐私增强软件的好处和风险：一项针对慢性病患者的名义小组技术研究

摘要

客观的

虽然患者经常为研究贡献数据，但他们希望研究人员保护他们的数据。作为隐私增强软件的参与式设计的一部分，本研究使用他们的医疗保健数据探讨了患者在研究中对隐私保护的看法。

材料和方法

我们使用名义小组技术对 27 名患者的隐私增强软件进行了 4 个焦点小组。我们为参与者提供了一个开源软件原型，以展示增强隐私的功能并引发隐私问题。参与者产生了关于收益、风险和所需额外信息的想法。在对结果进行主题分析之后，我们部署了一份在线问卷来确定所有 4 个组的共识。参与者被要求对收益和风险进行排序。围绕“需要额外信息”的主题以 5 点李克特量表的感知重要性进行评级。

结果

在使用隐私增强原型软件时，参与者认为“允许最小披露”和“目前不可用的全面隐私保护”是最重要的好处。最令人担忧的风险是“需要在软件之外进行额外检查以确保隐私保护”和“被授权用户滥用的可能性”。参与者表示希望获得更多信息，其中 11 个主题中有 6 个的参与者评级中值为“非常必要”，并将“关于数据保管人的信息”评级为“必要”。

结论

患者不仅认识到隐私增强软件的好处，而且还认识到固有的风险。患者希望了解有关如何使用和保护他们的数据的信息。有效的患者参与、沟通和研究透明度可以提高患者的舒适度，减轻患者的担忧，从而促进伦理研究。