Patient and public involvement in care home research: Reflections on the how and why of involving patient and public involvement partners in qualitative data analysis and interpretation.
community participation
long-term care facilities
patient and public involvement
qualitative research
research design
Journal
Health expectations : an international journal of public participation in health care and health policy
ISSN: 1369-7625
Titre abrégé: Health Expect
Pays: England
ID NLM: 9815926
Informations de publication
Date de publication:
08 2021
08 2021
Historique:
revised:
18
03
2021
received:
04
06
2020
accepted:
17
04
2021
pubmed:
12
5
2021
medline:
26
10
2021
entrez:
11
5
2021
Statut:
ppublish
Résumé
There is limited evidence for the impact of involving patients and the public (PPI) in health research. Descriptions of the PPI process are seldom included in publications, particularly data analysis, yet an understanding of processes and impacts of PPI is essential if its contribution to research is to be evaluated. To describe the 'how' of PPI in qualitative data analysis and critically reflect on potential impact. We focus on the development and critical reflection of our step-by-step approach to collaborative qualitative data analysis (through a series of analysis workshops) in a specific care home study, and our long-term engagement model with patients and the public (termed PPI partners). An open access PPI group, with multiple events over time, sustained broad interest in care home research. Recordings of interview clips, role-play of interview excerpts and written theme summaries were used in workshops to facilitate PPI partner engagement with data analysis in a specific study. PPI resulted in changes to data interpretation and was perceived to make the research process accessible. We reflect on the challenge of judging the benefits of PPI and presenting PPI in research publications for critical commentary. Patient and public involvement partners who are actively engaged with data analysis can positively influence research studies. However, guidance for researchers is needed on approaches to PPI, including appropriate levels and methods for evaluation. Without more systematic approaches, we argue that it is impossible to know whether PPI represents good use of resources and is generating a real impact.
Sections du résumé
BACKGROUND
There is limited evidence for the impact of involving patients and the public (PPI) in health research. Descriptions of the PPI process are seldom included in publications, particularly data analysis, yet an understanding of processes and impacts of PPI is essential if its contribution to research is to be evaluated.
OBJECTIVE
To describe the 'how' of PPI in qualitative data analysis and critically reflect on potential impact.
METHODS
We focus on the development and critical reflection of our step-by-step approach to collaborative qualitative data analysis (through a series of analysis workshops) in a specific care home study, and our long-term engagement model with patients and the public (termed PPI partners).
RESULTS
An open access PPI group, with multiple events over time, sustained broad interest in care home research. Recordings of interview clips, role-play of interview excerpts and written theme summaries were used in workshops to facilitate PPI partner engagement with data analysis in a specific study. PPI resulted in changes to data interpretation and was perceived to make the research process accessible. We reflect on the challenge of judging the benefits of PPI and presenting PPI in research publications for critical commentary.
CONCLUSIONS
Patient and public involvement partners who are actively engaged with data analysis can positively influence research studies. However, guidance for researchers is needed on approaches to PPI, including appropriate levels and methods for evaluation. Without more systematic approaches, we argue that it is impossible to know whether PPI represents good use of resources and is generating a real impact.
Identifiants
pubmed: 33974718
doi: 10.1111/hex.13269
pmc: PMC8369083
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
1349-1356Informations de copyright
© 2021 The Authors. Health Expectations published by John Wiley & Sons Ltd.
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