Jørgensen Clara R, Eskildsen Nanna B, Johnsen Anna T
1Department for Disability Inclusion and Special Needs, School of Education, University of Birmingham, B15 2TT, Edgbaston, Birmingham UK.
2Department of Psychology, University of Southern Denmark, Campusvej 55, DK-5230 Odense, Denmark.
Res Involv Engagem. 2018 Aug 13;4:26. doi: 10.1186/s40900-018-0105-3. eCollection 2018.
This paper reports on the process of involving former and current cancer patients and carers as co-researchers in a Danish mixed methods research project on patient empowerment of cancer patients in follow up (The Empowerment study 2015-2019). User-Involvement in health care research is a relatively new practice in Denmark and the Empowerment project was one of the first to systematically involve patients and carers in its research design, conduct and reporting. The paper has two aims: first, it provides a detailed account of the process of involving co-researchers in the Empowerment project and second, it presents findings from a workshop held with academic researchers and co-researchers on the project to discuss their experiences and recommendations for user-involvement in the Danish context.
The Empowerment project adopted a consultative and collaborative approach to user involvement and co-researchers were involved from the early stages and all through the project. Users gave feedback on the proposal, helped develop project documents and research tools, acted as peer interviewers in qualitative interviews, participated in data analysis and development of questionnaires, and co-authored journal articles. The workshop held with the academic researchers and co-researchers consisted of two parallel focus groups and a joint group discussion, following an interactive and informal format to facilitate discussion and exchange of ideas.
The focus group resulted in eleven recommendations for the further development of user-involvement in Denmark. Key issues encountered were the general lack of guidelines on user-involvement in the Danish context and the need for more organisational support. Particular issues, such as payment, recruitment and training, need to be carefully considered within individual projects and within the national context in which projects are carried out.
The paper adds to the current very limited knowledge base on user-involvement in the Danish context and provides a set of early recommendations for the further development of the practice in Danish Health Research. User-involvement needs to be developed with consideration to the local context, but common challenges also emphasise the usefulness of cross-country comparisons and knowledge exchange.
本文报告了在一项丹麦混合方法研究项目中，让癌症患者及护理人员作为共同研究者参与其中的过程。该项目旨在研究如何在后续阶段增强癌症患者的自主权（“赋权研究”，2015 - 2019年）。在丹麦，让用户参与医疗保健研究是一种相对较新的做法，而“赋权项目”是最早系统地让患者和护理人员参与研究设计、实施及报告的项目之一。本文有两个目的：其一，详细阐述在“赋权项目”中让共同研究者参与的过程；其二，展示与该项目的学术研究人员和共同研究者举办的一次研讨会的结果，会上讨论了他们在丹麦背景下用户参与方面的经验及建议。
“赋权项目”采用协商与合作的方式让用户参与，共同研究者从项目早期就参与进来并贯穿始终。用户对提案提供反馈，协助制定项目文件和研究工具，在定性访谈中担任同行访谈员，参与数据分析和问卷编制，并共同撰写期刊文章。与学术研究人员和共同研究者举办的研讨会由两个平行的焦点小组和一次联合小组讨论组成，采用互动和非正式的形式以促进讨论和思想交流。
焦点小组针对丹麦用户参与的进一步发展提出了十一条建议。遇到的关键问题是丹麦缺乏用户参与的总体指导方针以及需要更多的组织支持。诸如报酬、招募和培训等具体问题，需要在各个项目以及开展项目的国家背景下仔细考虑。
本文增加了丹麦背景下关于用户参与的当前非常有限的知识基础，并为丹麦卫生研究中该实践的进一步发展提供了一系列早期建议。用户参与需要结合当地情况来发展，但共同的挑战也凸显了跨国比较和知识交流的有用性。
