Assessment of the benefits of user involvement in health research from the Warwick Diabetes Care Research User Group: a qualitative case study
Assessment of the benefits of user involvement in health research from the Warwick Diabetes Care Research User Group: a qualitative case study
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DOI：
10.1111/j.1369-7625.2007.00451.x
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发表时间：
2007-09-01
影响因子：
3.2
通讯作者：
Aitchison, Geoff
中科院分区：
文献类型：
--
作者：
Lindenmeyer, Antje;Hearnshaw, Hilary;Aitchison, Geoff
目的为了评估的好处，涉及医疗保健用户在糖尿病research.Design和参与者对于这个定性的案例研究，半结构化的采访进行了广泛的工作与该集团的研究人员。在研究用户小组的定期会议上，成员们讨论了他们对小组有效性的看法，作为会议议程的一部分。采访和讨论被转录，编码使用N-维沃软件和分析使用不断的比较methods.Results用户参与研究一般被视为有助于有效和有意义的研究。但是，该组不应被视为代表患者人群或未来试验的参与者。该小组取得成功的一个重要因素是其长期的性质，使用户能够更深入地了解研究，并与研究人员建立建设性的工作关系。该小组由用户主导的性质得到了体现，特别是在小组会议期间使用的语言中。人们普遍承认，部分权力从研究人员转移到用户。用户的主要贡献是他们在糖尿病患者生活方面的实际专业知识，但他们的参与也有助于研究人员与研究将被应用的“真实的世界”保持联系。虽然该小组的工作履行既定的原则，消费者参与研究，重要的贡献，依靠用户和研究人员之间的个人互动很难评估的过程measures.Conclusions，我们证明了可行性，可接受性和有效性，这个长期的，经验丰富的，奠定了主导的研究咨询小组。它对研究的影响源于研究人员和用户之间的持续互动，以及在持续过程中相互学习的普遍风气。过程措施和定性访谈利益相关者需要评估服务用户的健康研究的贡献。
Objective To assess the benefits of involving health-care users in diabetes research.Design and participants For this qualitative case study, semi-structured interviews were conducted with researchers who had worked extensively with the group. During regular meetings of the Research User Group, members discussed their views of the group's effectiveness as part of the meeting's agenda. Interviews and discussions were transcribed, coded using N-Vivo software and analysed using constant comparative methods.Results Involvement of users in research was generally seen as contributing to effective and meaningful research. However, the group should not be considered to be representative of the patient population or participants of future trials. An important contributor to the group's success was its longstanding nature, enabling users to gain more insight into research and form constructive working relationships with researchers. The user-led nature of the group asserted itself, especially, in the language used during group meetings. A partial shift of power from researchers to users was generally acknowledged. Users' main contribution was their practical expertise in living with diabetes, but their involvement also helped researchers to remain connected to the 'real world' in which research would be applied. While the group's work fulfilled established principles of consumer involvement in research, important contributions relying on personal interaction between users and researchers were hard to evaluate by process measures alone.Conclusions We demonstrated the feasibility, acceptability and effectiveness of this longstanding, experienced, lay-led research advisory group. Its impact on research stems from the continuing interaction between researchers and users, and the general ethos of learning from each other in an on-going process. Both process measures and qualitative interviews with stakeholders are needed to evaluate the contributions of service users to health research.