Jones Ray, Rogers Ray, Roberts Jean, Callaghan Lynne, Lindsey Laura, Campbell John, Thorogood Margaret, Wright Graham, Gaunt Nick, Hanks Chris, Williamson Graham R
School of Nursing and Community Studies, University of Plymouth, Faculty of Health and Social Work, Plymouth PL3 4SP, UK.
J Med Internet Res. 2005 Nov 10;7(5):e54. doi: 10.2196/jmir.7.5.e54.
In 2003, the National Health Service in England and Wales, despite its large investment in information and communication technology, had not set a national research agenda. The National Health Service has three main research and development programs: one is the Service Delivery and Organisation program, commissioned in 2003, and the others are two parallel "scoping exercises" to help set a research agenda. This paper reports on one of those projects. A parallel literature review was carried out by others and has been reported elsewhere.
The objective was to explore the concerns of stakeholders and to review relevant policy in order to produce recommendations and a conceptual map of eHealth research.
There were two parallel strands. For the stakeholder consultation, 37 professionals representing 12 "stakeholder" groups participated in focus groups or interviews. Discussion was prompted by eHealth "scenarios" and analyzed using thematic content analysis. Subsequently, 17 lay participants, in three focus groups, discussed and prioritized these themes. For the policy review, 26 policy makers were interviewed, and 95 policy documents were reviewed. Recommendations were subsequently reviewed in a conference workshop. Recommendations for research from both strands were combined into a conceptual map.
Themes from stakeholder consultation and policy review were combined as 43 recommendations under six headings. Four of these headings (using, processing, sharing, and controlling information) describe the scope of eHealth research. The other two relate to how research should be carried out (ensuring best practice is first identified and disseminated) and to the values considered important by stakeholders (in particular, measuring improvement in health).
The scope of eHealth research (using, processing, sharing, controlling information) derived empirically from this study corresponds with "textbook" descriptions of informatics. Stakeholders would like eHealth research to include outcomes such as improved health or quality of life, but such research may be long term while changes in information technology are rapid. Longer-term research questions need to be concerned with human behavior and our use of information, rather than particular technologies. In some cases, "modelling" longer-term costs and benefits (in terms of health) may be desirable.
2003年，英格兰和威尔士的国民医疗服务体系尽管在信息和通信技术方面投入巨大，但尚未制定全国性的研究议程。国民医疗服务体系有三个主要的研发项目：一个是2003年委托开展的服务提供与组织项目，另外两个是并行的“范围界定活动”，以帮助制定研究议程。本文报告其中一个项目。其他人进行了并行的文献综述，相关内容已在其他地方报道。
目的是探究利益相关者的关注点，并审视相关政策，以便提出建议并绘制电子健康研究的概念图。
有两条并行的研究路径。在利益相关者咨询方面，代表12个“利益相关者”群体的37名专业人员参加了焦点小组或访谈。通过电子健康“情景”引发讨论，并采用主题内容分析法进行分析。随后，17名普通参与者在三个焦点小组中对这些主题进行了讨论并确定了优先顺序。在政策审查方面，对26名政策制定者进行了访谈，并审查了95份政策文件。随后在一次会议研讨会上对建议进行了审议。将两条路径的研究建议合并成一个概念图。
利益相关者咨询和政策审查的主题合并为六个标题下的43条建议。其中四个标题（信息的使用、处理、共享和控制）描述了电子健康研究的范围。另外两个标题涉及研究应如何开展（确保首先确定并传播最佳实践）以及利益相关者认为重要的价值观（特别是衡量健康状况的改善）。
本研究从实证角度得出的电子健康研究范围（信息的使用、处理、共享、控制）与信息学的“教科书”描述相符。利益相关者希望电子健康研究能涵盖健康改善或生活质量提高等成果，但此类研究可能是长期的，而信息技术变化迅速。长期研究问题需要关注人类行为以及我们对信息的使用，而非特定技术。在某些情况下，对（健康方面的）长期成本和效益进行“建模”可能是可取的。
