Population Data Science, School of Medicine, Swansea University, Swansea, United Kingdom.
JMIR Mhealth Uhealth. 2019 Jan 16;7(1):e11730. doi: 10.2196/11730.
Mobile phone call detail records (CDRs) are increasingly being used in health research. The location element in CDRs is used in various health geographic studies, for example, to track population movement and infectious disease transmission. Vast volumes of CDRs are held by multinational organizations, which may make them available for research under various data governance regimes. However, there is an identified lack of public engagement on using CDRs for health research to contribute to an ethically founded framework.
This study aimed to explore public views on the use of call detail records in health research.
Views on using CDRs in health research were gained via a series of three public workshops (N=61) informed by a pilot workshop of 25 people. The workshops included an initial questionnaire to gauge participants' prior views, discussion on health research using CDRs, and a final questionnaire to record workshop outcome views. The resulting data were analyzed for frequencies and emerging themes.
At the outset, most participants (66%, 40/61) knew that location data were collected by operators, but only 3% (2/61) knew they were being used for health research. Initially, the majority of the participants (62%, 38/61) was content for their anonymous CDRs to be used, and this increased (80%, 49/61) after the discussion explained that safeguards were in place. Participants highlighted that terms and conditions should be clearer, as should information to phone users on data collection, privacy safeguards, sharing, and uses in research.
This is the first known study exploring public views of using mobile phone CDRs in health research. It revealed a lack of knowledge among the public on uses of CDRs and indicated that people are generally amenable to the use of anonymized data for research, but they want to be properly informed and safeguarded. We recommend that public views be incorporated into an ethically founded framework for the use of CDRs in health research to promote awareness and social acceptability in data use.
移动电话通话记录（CDR）越来越多地被用于健康研究。CDR 中的位置元素被用于各种健康地理研究中，例如，跟踪人口流动和传染病传播。跨国组织持有大量 CDR，这些 CDR 可能根据各种数据治理制度可供研究使用。然而，在使用 CDR 进行健康研究以促进基于伦理的框架方面，公众参与度明显不足。
本研究旨在探讨公众对使用 CDR 进行健康研究的看法。
通过一系列三次公众研讨会（N=61），利用 25 人的试点研讨会来获取对健康研究中使用 CDR 的看法。研讨会包括初步问卷调查参与者的先前观点、关于使用 CDR 进行健康研究的讨论，以及最后一次问卷调查记录研讨会的结果观点。对产生的数据进行频率和主题分析。
一开始，大多数参与者（66%，40/61）知道运营商收集位置数据，但只有 3%（2/61）知道这些数据被用于健康研究。最初，大多数参与者（62%，38/61）对使用他们的匿名 CDR 感到满意，在讨论解释了已经采取了保障措施后，这一比例增加到 80%（49/61）。参与者强调，应该更清楚地说明条款和条件，以及应该向手机用户提供有关数据收集、隐私保护、共享和研究用途的信息。
这是第一项探索公众对使用移动电话 CDR 进行健康研究的看法的研究。它揭示了公众对 CDR 使用情况的了解不足，并表明人们普遍愿意为研究使用匿名数据，但他们希望得到适当的通知和保护。我们建议将公众意见纳入 CDR 在健康研究中的使用的基于伦理的框架中，以提高数据使用的意识和社会可接受性。
