Abstract
Biomedical research policy in many countries has adopted the principle of active involvement in research. However, how different approaches to involvement such as patient and public involvement/engagement (PPIE), qualitative research, participatory research, co-design and co-production sit alongside each other, is
contentious and unclear. There has also been a subtle shift in the discourse, with the language of co-design and co-production used more widely in debates about involvement. This shift has surfaced once again debates about what counts as meaningful involvement. In this paper we seek to contribute to this debate by exploring boundaries and overlaps between them. We suggest that they share some underpinning philosophies and all are prone to be challenged on the grounds of tokenism despite avowed good intentions. We argue that these different approaches are not necessarily as distinct as is often advocated and question whether there is merit in this family of marginalised approaches working more collaboratively to give patient voices greater traction. At the same time, we recognise that this creates challenges and tensions.
contentious and unclear. There has also been a subtle shift in the discourse, with the language of co-design and co-production used more widely in debates about involvement. This shift has surfaced once again debates about what counts as meaningful involvement. In this paper we seek to contribute to this debate by exploring boundaries and overlaps between them. We suggest that they share some underpinning philosophies and all are prone to be challenged on the grounds of tokenism despite avowed good intentions. We argue that these different approaches are not necessarily as distinct as is often advocated and question whether there is merit in this family of marginalised approaches working more collaboratively to give patient voices greater traction. At the same time, we recognise that this creates challenges and tensions.
| Original language | English |
|---|---|
| Pages (from-to) | 409-421 |
| Number of pages | 13 |
| Journal | Evidence & Policy |
| Volume | 15 |
| Issue number | 3 |
| Early online date | 2 Aug 2019 |
| DOIs | |
| Publication status | Published - Aug 2019 |
Bibliographical note
Funding details: Through the ‘Co-Creative Capacity’ pursuit, this work was supported by the National Socio-Environmental Synthesis Center (SESYNC) under funding received from the National Science Foundation DBI-1052875.LL’s post at the University of Aberdeen is supported by the Chief Scientist Office, Scotland.
Acknowledgements: Thanks to many colleagues (too numerous to name) for discussions over the years which have prompted this paper, but particularly the late Rosamund Snow and Anne-Marie Boylan for initial ideas; Pat Hoddinott, Glenn Robert and Allison Metz for commenting on previous drafts and debating our thinking with us; and our anonymous reviewers. We alone remain responsible for content.
Keywords
- patient and public involvement
- qualitative research
- co-production
- co-design
- TOKENISM
- REFLECTIONS
- WORK
- SCIENCE
- Qualitative research
- Co-design
- Patient and public involvement
- Co-production