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. 2024 Jul 11;10(1):72.
doi: 10.1186/s40900-024-00604-z.

Exploring barriers and solutions to consumer involvement in health service research using a nominal group technique

Laura Ryan  1 , Rachel Wenke  2   3   4 , Joan Carlini  5   6 , Kelly A Weir  7   8 , Margaret Shapiro  5 , Noela Baglot  5 , Georgia Tobiano  9   10 , Sally Sargeant  11 , Laetitia Hattingh  2   12   13
Affiliations

Exploring barriers and solutions to consumer involvement in health service research using a nominal group technique

Laura Ryan et al. Res Involv Engagem. .

Abstract

Background: Consumer involvement in health research is when patients, their families and caregivers work with researchers on research projects. Despite the growing expectation for health services to facilitate the involvement of consumers in research, the practical integration of this approach is an ongoing process, with limited research conducted into how Australian health services can support this practice. This study explored consumer perspectives on the barriers and solutions to enabling consumer involvement in research within an Australian tertiary hospital and health service, and staff perspectives on the solutions to facilitating consumer involvement. A prior survey had identified barriers to consumer involvement from the staff perspective. The broad aim was to inform the development of a framework to help promote consumer involvement in research within the health service.

Methods: A Nominal Group Technique (NGT) was utilised with groups comprised of health service consumers and staff. Three health consumers were co-researchers in the full life-cycle of this study and are included as authors.

Results: Ten consumers and 14 staff participated across three sessions ranging from one to three hours. For consumers, barriers to their involvement were grouped into seven domains: (1) lack of connection with researchers/research projects, (2) low research literacy, (3) structural barriers, (4) lack of acknowledgement, (5) implementation challenges, (6) inadequate information provision, and (7) representation concerns. Solutions to enabling involvement were grouped into five domains: (1) support to connect with researchers/research projects, (2) adequate information provision, (3) incentive for involvement, (4) acknowledgement, and (5) balanced representation. Staff ideas for solutions were grouped into five domains: (1) support to connect with consumers, (2) support to involve consumers, (3) access to funds to remunerate consumers, (4) more time to involve consumers, and (5) staff training.

Conclusion: Through an NGT methodology, this study delivered a nuanced comprehension of perspectives on involving consumers in research from both health service consumers and staff. These findings serve as a foundation for identifying strategies that foster enhanced and refined relationships between consumers and researchers, advancing the collaborative landscape in health research. The findings from this project offer valuable strategies for researchers to better engage consumers in research and for consumer groups to enhance their involvement. Additionally, these insights could be used by other health services to advocate for essential resources.

Keywords: Consumer and community engagement; Health research; Hospitals; Patient and public involvement; Patient participation.

Plain language summary

Consumer involvement in health research is when patients, their families, and caregivers work with researchers on research projects. While there is a growing expectation for health services to promote the involvement of consumers in health service research, it is still a work in progress, especially in Australia, where there hasn’t been much research done on this topic. This study looked at what consumers and staff at an Australian hospital thought would hinder or help consumers to become involved in health research. The study used a method called the Nominal Group Technique (NGT), where groups of staff and consumers met for sessions ranging from one to three hours to share and prioritise their ideas. Consumers thought that barriers to their involvement included difficulty connecting with researchers or projects, not knowing much about research, and personal barriers to involvement (such as lack of childcare). They believed that better connection with researchers, information, incentives for involvement, and ensuring everyone’s voices are heard were possible solutions. Staff also had ideas for solutions, like providing support to connect with consumers and more time for research activities. Overall, this study describes what consumers and staff think about working together on research. These findings can help develop strategies for building relationships between consumers and researchers, advancing collaborative efforts in health research.

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Conflict of interest statement

The authors declare no competing interests.

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