在癌症研究中分享互联网浏览历史的可接受性:大声思考和采访研究
Nicola Cara Gradwell1, Mel Ramasawmy1, Sanjula Arora1
1Wolfson Institute of Population Health, Queen Mary University of London, Charterhouse Square, London, EC1M 6BQ, United Kingdom, 44 020 7882 3850.
JMIR cancer
|February 2, 2026
概括
浏览互联网的历史记录可以帮助早期发现疾病,但隐私和信任是参与者的关键问题. 确保数据共享的透明度和控制对于公众对健康研究的接受至关重要.
科学领域:
- 数字健康数字健康
- 医疗信息学 医疗信息学
- 公共卫生监督 公共卫生监督
背景情况:
- 互联网搜索行为可能提供早期数字疾病信号.
- 浏览数据为公共卫生监测和早期干预提供了机会.
- 在医学研究中使用敏感的互联网数据的可接受性尚不清楚,特别是对于弱势群体.
研究的目的:
- 探索使用互联网浏览历史数据用于健康研究的可行性和可接受性.
- 了解参与者关于分享医疗研究敏感数字数据的观点.
主要方法:
- 有目的的抽样确保了面临数字和健康不平等风险的群体的代表性.
- 与参与者进行了半结构化和大声思考的采访.
- 采访成绩单的专题分析,以适应的可接受性理论框架为指导.
主要成果:
- 信任,透明度和控制对于参与者愿意分享数据的意愿至关重要.
- 隐私问题尤为突出,特别是在非健康相关或第三方信息方面.
- 参与者认识到早期诊断的潜在好处,但也对数据滥用和数字素养表示担忧.
结论:
- 参与者的建议强调平衡隐私与互联网历史数据的早期诊断潜力.
- 伦理和包容性的方法对于利用互联网浏览历史的健康研究至关重要.
- 未来的研究应该侧重于清晰的沟通,数据过器,用户友好的指导和与参与者建立信任.
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