Patient and public involvement in hearing research: opportunities, impact and reflections with case studies from the Manchester Centre for Audiology and Deafness

Abstract

Objective

Patient and public involvement (PPI) in research improves relevance to end users and improves processes including recruitment participants. PPI in our research has gone from being non-existent to ubiquitous over a few years. We provide critical reflections on the benefits and challenges of PPI.

Design

Case studies are reported according to a modified GRIP2 framework; the aims, methodology, impact of PPI and critical reflections on each case and our experiences with PPI in general.

Study sample

We report five UK projects that included PPI from teenagers, families, people living with dementia, autistic people, and people from South Asian and d/Deaf communities.

Results

Our experience has progressed from understanding the rationale to grappling methodologies and integrating PPI in our research. PPI took place at all stages of research, although commonly involved input to design including recruitment and development of study materials. Methodologies varied between projects, including PPI co-investigators, advisory panels and online surveys.

Conclusion

On-going challenges include addressing social exclusion from research for people that lack digital access following increasing on-line PPI and involvement from underserved communities. PPI was initially motivated by funders; however the benefits have driven widespread PPI, ensuring our research is relevant to people living with hearing loss.

Keywords:

• Patient and public involvement
• consumer and community involvement
• lay involvement
• service user involvement
• codevelopment

Acknowledgements

The authors would like to dedicate this publication to our late friend and colleague Suzanne Parsons, social scientist, health services researcher and patient and public involvement manager and advocate for patients. PPI co-authors participated in discussion meetings on the scope and focus of the paper and the choice of case studies. PPI co-authors contributed to writing case studies and provided input and approval for drafts of the manuscript.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the NIHR Manchester Biomedical Research Centre under grant [BRC-1215-20007]. PALOH was funded by NIHR i4i program [II-LB-0417-20002]. JHM is funded by a NIHR Doctoral Fellowship [301748]. The SENSE-Cog project received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement [No. 668648]. The SPAACE project was supported by the NIHR Manchester Biomedical Research Centre. The HIT project was funded by the Medical Research Council [MR/V01272X/1].