‘Getting involved in Research’: A co-created, co-delivered and co-analysed course for those with lived experience of health and social care services

Carolyn Blair, Paul Best, Patricia Burns, Anne Campbell, Gavin Davidson, Joe Duffy, Anne Johnston, Berni Kelly, Campbell Killick, Denise Mac Dermott, Alan Maddock, Claire McCartan, Paula McFadden, Anne McGlade, Lorna Montgomery, Sonia Patton, Dirk Schubotz, Brian Taylor, Fiona Templeton, Paul WebbChris White, Jade Yap

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Background: ‘Getting Involved in Research’ was co-created and delivered by a multi-organisational group to provide an accessible introduction to research for those with lived experience of health and social care services.

Method: The evaluation of participants’ perceptions adopted an exploratory mixed method research design and aimed to gather data to provide an in-depth understanding of the participants’ experience of ‘Getting Involved in Research’ through the co-researchers’ analysis of qualitative data using Participatory Theme Elicitation (PTE). PTE was used with the qualitative data to promote co-analysis by the course development group; analyses from an independent academic was also used to further validate the method of PTE.

Results: Thirty-five participants in total participated in ‘Getting Involved in Research’. Age ranges varied from 19 to 73 years old. Participants were predominately female (n=24), five males participated (n=5) and there was one participant who identified as non-binary (n=1). Six core themes were identified using the PTE approach: (1) A Meaningful Participatory Approach (2) Increasing the Confidence of Participants (3) Interactive Online Format (4) An Ambient Learning Environment (5) A Desire for Future Courses (6) A Balance of Course Content and Discussion. Participants in ‘Getting Involved in Research’ reported that the content of the training was applicable, relevant, fostered awareness of research methods and anticipated that it would support their involvement in research.

Conclusion: ‘Getting Involved in Research’ has contributed innovatively to the evidence base for how to engage with and motivate those who have experience of health and social care to become actively involved in research. This study demonstrates that ‘Getting Involved in Research’ may be helpful to train those with lived experience and their care partners however, further research following up on the application of the course learning would be required to ascertain effectiveness.

Future Directions: Future research should explore methods to apply research skills in practice to further develop participants’ confidence in using the skills gained through ‘Getting Involved in Research’.

Original languageEnglish
Article number20
JournalBMC Research Involvement and Engagement
Issue number20
Publication statusPublished - 16 May 2022


  • Participatory research, Health and Social Care Education, Patient and public Involvement (PPI), lived experience, service users, participatory theme elicitation (PTE).


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