Public Preferences regarding Data Linkage for Health Research: A Discrete Choice Experiment.
Public Preferences regarding Data Linkage for Health Research: A Discrete Choice Experiment.
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DOI：
10.23889/ijpds.v3i1.429
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发表时间：
2018-06-26
影响因子：
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通讯作者：
Cunningham-Burley, Sarah
中科院分区：
文献类型：
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作者：
Aitken, Mhairi;McAteer, Gareth;Cunningham-Burley, Sarah
在公共和私营部门收集的数据有可能联系起来并用于研究，这使人们越来越关注公众对数据共享和数据联系的可接受性。文献已经确定了一系列对形成公众反应很重要的因素，并特别指出，公众对通过数据链接或数据共享进行的研究的支持取决于若干条件是否得到满足。为了检验这些条件的相对重要性，一个离散选择实验（DCE）是通过Ipsos MORI在苏格兰的在线小组成员之间的在线问卷调查进行的。该调查共有1004名受访者完成。总体而言，影响受访者偏好的两个最具影响力的因素是：所链接的数据类型；如何管理和分享利润。被链接的数据类型大约是研究人员身份的两倍。各年龄组和性别之间存在细微差异，在比较有和没有长期健康状况的答复者时也存在细微差异。受访者之间最显著的差异是在按就业和工作部门比较受访者时发现的。这项研究就各种条件的相对重要性提供了急需的证据，这些条件对于确保和维持公众对卫生研究数据联系的支持可能至关重要。这可能有助于指出在未来的公众参与中应关注哪些因素，并对研究和公众参与活动的设计和实施具有重要意义。该领域不断发展的性质意味着有必要不断重新审视公众支持的关键条件，并审查这些条件可能发生变化的背景和环境。
The potential for data collected in the public and private sector to be linked and used in research has led to increasing interest in public acceptability of data sharing and data linkage. The literature has identified a range of factors that are important for shaping public responses and in particular has noted that public support for research conducted through data linkage or data sharing is contingent on a number of conditions being met. In order to examine the relative importance of these conditions a Discrete Choice Experiment (DCE) was conducted via an online questionnaire among members of Ipsos MORI's online panel in Scotland. The survey was completed by 1,004 respondents. Overall the two most influential factors shaping respondents' preferences are: the type of data being linked; and, how profits are managed and shared. The type of data being linked is roughly twice as important as who the researchers are. There were slight differences across age groups and between genders and slight differences when comparing respondents with and without long term health conditions. The most notable differences between respondents were found when comparing respondents according to employment and working sector. This study provides much needed evidence regarding the relative importance of various conditions which may be essential for securing and sustaining public support for data-linkage in health research. This may be useful for indicating which factors to focus on in future public engagement and has important implications for the design and delivery of research and public engagement activities. The continuously evolving nature of the field means it will be necessary to revisit the key conditions for public support on an ongoing basis and to examine the contexts and circumstances in which these might change.