Sharing space at the research table: exploring public and patient involvement in a methodology priority setting partnership

Nikita N Burke; Derek Stewart; Theresa Tierney; Andrew Worrall; Maureen Smith; Jim Elliott; Claire Beecher; Declan Devane; Linda Biesty

doi:10.1186/s40900-023-00438-1

Sharing space at the research table: exploring public and patient involvement in a methodology priority setting partnership

Res Involv Engagem. 2023 May 2;9(1):29. doi: 10.1186/s40900-023-00438-1.

Authors

Nikita N Burke^{1

2}, Derek Stewart³, Theresa Tierney⁴, Andrew Worrall⁵, Maureen Smith⁶, Jim Elliott⁷, Claire Beecher^{8

9}, Declan Devane^{8

9

10}, Linda Biesty⁹

Affiliations

¹ Evidence Synthesis Ireland and Cochrane Ireland, University of Galway, Galway, Ireland. nikita.burke@universityofgalway.ie.
² School of Nursing and Midwifery, Aras Moyola, University of Galway, Galway, Ireland. nikita.burke@universityofgalway.ie.
³ Honorary Professor, University of Galway, Galway, Ireland.
⁴ Public Co-Author, Health Research Board Primary Care Clinical Trials Network Ireland, Galway, Ireland.
⁵ Public Co-Author, Evidence Synthesis Ireland and Staffordshire, Staffordshire, UK.
⁶ Public Co-Author, Cochrane Consumer Network Executive, Ottawa, Canada.
⁷ Public Co-Author, Evidence Synthesis Ireland, Galway, Ireland.
⁸ Evidence Synthesis Ireland and Cochrane Ireland, University of Galway, Galway, Ireland.
⁹ School of Nursing and Midwifery, Aras Moyola, University of Galway, Galway, Ireland.
¹⁰ Health Research Board Trials Methodology Research Network, University of Galway, Galway, Ireland.

Abstract

Background: Public and patient involvement aims to improve research quality, relevance, and appropriateness. Despite an increasing evidence base on the influence of public involvement in health research, the role of involvement in methodology research (i.e. research that aims to enhance the quality and rigour of research) is less clear. Using a qualitative case study, we explored public involvement in a research priority-setting partnership in rapid review methodology (Priority III) to give practical insights to inform public involvement in priority-setting for future methodological research.

Methods: Participant observation, documentary analysis, interviews and focus groups were used to explore the processes of Priority III and identify the views and experiences of the participants of a steering group (n = 26) regarding public involvement in Priority III. We used a case study research design and conducted two focus groups with five public partners; one focus group with four researchers; and seven one-to-one interviews with researchers and public partners. Nine episodes of participant observation of meetings were conducted. All data were analysed using template analysis.

Results: The findings of this case study present three themes and six subthemes: Theme 1 We all bring unique qualities to the table. Subtheme 1.1-Coming from different perspectives towards shared-decision making; Subtheme 1.2-Public partners bring pragmatism and grounding in reality; Theme 2 We need support and space at the table. Subtheme 2.1-Define and develop support needed for meaningful involvement; Subtheme 2.2-Creating safe space to listen, challenge and learn; Theme 3 We all benefit from working together. Subtheme 3.1-Reciprocity in mutual learning and capacity building; Subtheme 3.2-Relationships as partners in research, with a feeling of togetherness. Communication and trust, as inclusive ways of working, underpinned the partnership approach to involvement.

Conclusions: This case study contributes to knowledge on public involvement in research by explaining the supportive strategies, spaces, attitudes and behaviours that enabled a productive working partnership to develop between a team of researchers and public partners in this research context.

Keywords: Co-production; Evidence synthesis; Methodology; Mutual learning; Patient engagement; Priority-setting partnership; Public and patient involvement; Rapid review.

Plain language summary

Public and patient involvement is well known in research where patients share their lived experience for a health-related study. However, the role of public and patients in methodology research (research that aims to improve the quality of research) is not clear.A priority-setting partnership brings patients, carers, clinicians and other stakeholders together to jointly identify priorities for research. We looked at public involvement in a priority-setting partnership in how we plan, do, and share the results of rapid reviews—the Priority III project. We wanted to do this to better support public involvement in future research.We explored the processes of Priority III and asked the members of the Priority III steering group for their views and experiences of public involvement in the project. We found three themes:1: We all bring unique qualities to the table.2: We need support and space at the table.3: We all benefit from working together.Communication and trust were found to be important across all themes. Even though public partners felt outside of their comfort zones when starting the project, they significantly helped the project, brought unique views, ideas and practical solutions. Support and safe spaces were needed to help overcome challenges due to the complex methodological concepts. Researchers and public partners learned from one another, and developed relationships with a feeling of being “partners in research”. Our findings offer insight into what helped public involvement in this research context. We give examples of practical actions and suggestions for future research.