Involving people with lived experience in identifying and prioritising topics for health research: a review of the literature.
Over the last ten years, there has been growing interest among patient organisations and funding agencies in UK to involve people with lived experience in developing a health research agenda. Involving people with lived experience in identifying health research areas is a powerful way to influence what will be researched. It can promote research into difficult and unresolved problem and provide a route to conducting research that is relevant and can lead to changes in practice. A wide range of methods and approaches have been used to involve people at this stage of research however only a handful of studies have attempted to understand the strengths and weaknesses of some of these models.
The aim of this study is to explore ways people have been involved in identifying and/or prioritising health research topics and the effectiveness associated with these methods.
A Lived Experience Advisory Group will help to shape the overall scope of the review and provide advice and guidance throughout the project.
Researcher: This study will be undertaken by Iliana Rokkou as part of her CLAHRC Fellowship. Iliana is the lead for Patient and Public Involvement in Research at CPFT. She has a background in Psychology and Counselling.
Involvement: We need six people with relevant experience to be part of the Lived Experience Advisory Group of this project. Members of the group will provide feedback on the language used in the research, type of knowledge that will need to be collected as well as the way the information will be analysed, reported and disseminated. Members of the group could also contribute to writing reports for a service user and carer audience.
Experience: You will need some previous experience of contributing to health research (preferably mental health or dementia), as well as your lived experience of mental health issues and/or using services or supporting a friend or family member who uses services. Experience of being involved in identifying research topics and/or setting up research projects is desirable but not essential. We hope that the members of the group can bring a diversity of perspectives.
Time commitment: The group will meet roughly four times until the beginning of December 2018. The first meeting of the group will be held on 13th March 2018, 11am-1pm in Cambridge. Some of he work might be done via email between meetings.
Payment and support: £10/hour for attending each meeting will be offered. Travel expenses up to an average of £40 per person will be offered. Please note, this income may have implications for those claiming benefits. All income must be declared to the Inland Revenue.
If you’d like to participate please contact us!!