Public attitudes towards sharing loyalty card data for academic health research: a qualitative study.
Public attitudes towards sharing loyalty card data for academic health research: a qualitative study.
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DOI：
10.1186/s12910-022-00795-8
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发表时间：
2022-06-07
影响因子：
2.7
通讯作者：
Skatova, Anya
中科院分区：
文献类型：
--
作者：
Dolan, Elizabeth H.;Shiells, Kate;Goulding, James;Skatova, Anya
关键词：
越来越多的研究表明，忠诚卡数据有潜力用于卫生研究。然而，关于公众对使用这些数据的看法的研究是有限的。本研究旨在调查公众对捐赠忠诚卡数据用于学术健康研究的态度，以及公众希望看到实施的保障措施。研究人员还研究了参与者的态度会因会员卡数据是用于癌症研究还是用于COVID-19研究而有所不同。参与者（N = 40）通过多产学术招募参加半结构化电话访谈，问题集中于与COVID-19或卵巢癌/肠癌相关的数据共享，作为拟研究的健康状况。内容分析用于确定对应于两个先验主题——态度和保障措施的分主题。研究发现，参与者的态度可分为理性和感性两类。在理性条件下，大多数参与者赞成共享会员卡数据。对卫生研究的支持被视为捐赠此类数据的一个重要原因，会员卡日志被认为已经属于公共领域。随着对研究目的了解的增加，参与者对数据的捐赠意愿也越来越高。在情感方面，参与者分享了对泄露位置信息和第三方获取他们数据的恐惧。关于保障措施，与会者描述了匿名化的重要性和数据细节的水平；他们想要的数据共享的控制、便利和选择；以及对透明度和数据安全的需求。数据共享的假设目的从Covid-19到癌症研究的变化，对参与者的捐赠决定没有影响，尽管确实影响了他们对如何使用会员卡数据的理解。基于对公众的访谈，本研究为那些寻求获得健康研究忠诚卡数据的研究人员和更广泛的政策团体提供了建议。虽然参与者大多赞成为学术卫生研究捐赠会员卡数据，但信息、选择和适当的保障措施都是做出决定的先决条件。在线版本包含补充材料，可在10.1186/s12910-022-00795-8获得。
A growing number of studies show the potential of loyalty card data for use in health research. However, research into public perceptions of using this data is limited. This study aimed to investigate public attitudes towards donating loyalty card data for academic health research, and the safeguards the public would want to see implemented. The way in which participant attitudes varied according to whether loyalty card data would be used for either cancer or COVID-19 research was also examined. Participants (N = 40) were recruited via Prolific Academic to take part in semi-structured telephone interviews, with questions focused on data sharing related to either COVID-19 or ovarian/bowel cancer as the proposed health condition to be researched. Content analysis was used to identify sub-themes corresponding to the two a priori themes, attitudes and safeguards. Participant attitudes were found to fall into two categories, either rational or emotional. Under rational, most participants were in favour of sharing loyalty card data. Support of health research was seen as an important reason to donate such data, with loyalty card logs being considered as already within the public domain. With increased understanding of research purpose, participants expressed higher willingness to donate data. Within the emotional category, participants shared fears about revealing location information and of third parties obtaining their data. With regards to safeguards, participants described the importance of anonymisation and the level of data detail; the control, convenience and choice they desired in sharing data; and the need for transparency and data security. The change in hypothetical purpose of the data sharing, from Covid-19 to cancer research, had no impact on participants’ decision to donate, although did affect their understanding of how loyalty card data could be used. Based on interviews with the public, this study contributes recommendations for those researchers and the wider policy community seeking to obtain loyalty card data for health research. Whilst participants were largely in favour of donating loyalty card data for academic health research, information, choice and appropriate safeguards are all exposed as prerequisites upon which decisions are made. The online version contains supplementary material available at 10.1186/s12910-022-00795-8.
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