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

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

Journal

International journal of audiology
ISSN: 1708-8186
Titre abrégé: Int J Audiol
Pays: England
ID NLM: 101140017

Informations de publication

Date de publication:
26 Dec 2022
Historique:
entrez: 27 12 2022
pubmed: 28 12 2022
medline: 28 12 2022
Statut: aheadofprint

Résumé

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. 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. 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. 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. 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.

Identifiants

pubmed: 36573267
doi: 10.1080/14992027.2022.2155881
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

1-9

Subventions

Organisme : Medical Research Council
ID : MR/V01272X/1
Pays : United Kingdom

Auteurs

Piers Dawes (P)

School of Health and Rehabilitation Sciences, University of Queensland, Brisbane, Australia.
Manchester Centre for Audiology and Deafness, School of Health Sciences, University of Manchester, Manchester, UK.

Paolo Arru (P)

Vocal, Manchester University NHS Foundation Trust, Manchester, UK.

John Henry McDermott (JH)

Manchester Centre for Genomic Medicine, Manchester University NHS Foundation Trust, Manchester, UK.
Evolution, Infection and Genomics, School of Biological Sciences, University of Manchester, Manchester, UK.

Hannah Guest (H)

Manchester Centre for Audiology and Deafness, School of Health Sciences, University of Manchester, Manchester, UK.

Emily Howlett (E)

Vocal, Manchester University NHS Foundation Trust, Manchester, UK.

Iain Jackson (I)

Manchester Centre for Audiology and Deafness, School of Health Sciences, University of Manchester, Manchester, UK.

Rachel James (R)

Manchester Centre for Genomic Medicine, Manchester University NHS Foundation Trust, Manchester, UK.
Evolution, Infection and Genomics, School of Biological Sciences, University of Manchester, Manchester, UK.

Annie Keane (A)

Vocal, Manchester University NHS Foundation Trust, Manchester, UK.

Carlyn Murray (C)

Manchester Centre for Audiology and Deafness, School of Health Sciences, University of Manchester, Manchester, UK.

William Newman (W)

Manchester Centre for Genomic Medicine, Manchester University NHS Foundation Trust, Manchester, UK.
Evolution, Infection and Genomics, School of Biological Sciences, University of Manchester, Manchester, UK.

Anisa Visram (A)

Manchester Centre for Audiology and Deafness, School of Health Sciences, University of Manchester, Manchester, UK.

Kevin J Munro (KJ)

Manchester Centre for Audiology and Deafness, School of Health Sciences, University of Manchester, Manchester, UK.
Manchester University Hospitals NHS Foundation Trust, Manchester Academic Health Science Centre, Manchester, UK.

Classifications MeSH