A collaborative approach to patient involvement in health research: challenges and enablers
Parveen, Sahdia Giles, S. Din, I.
Parveen, Sahdia
Giles, S.
Din, I.
Publication Date
2014
End of Embargo
Supervisor
Rights
Peer-Reviewed
Yes
Open Access status
closedAccess
Accepted for publication
Institution
Department
Awarded
Embargo end date
Collections
Additional title
Abstract
There is considerable concern that patient involvement within health care research is tokenistic in nature. This has led to an increasing interest in the quality of patient involvement in research with active collaboration with patients and carers encouraged. In this paper, with specific reference to renal disease, the aim was to identify and explore the possible challenges that may arise from academic researchers collaborating with clinicians, patients and carers as part of the same project panel. The project panel consisted of the principal investigator, senior research fellow, research practitioner, a nephrology consultant, a cultural liaison officer, pre-dialysis, dialysis and transplant patients and also a carer. Semi-structured qualitative interviews were conducted with members of the panel. The main challenges identified included: ensuring the panel included patients from different modalities of renal disease and different social and cultural s, managing member expectations, conducting meetings, communication, financial constraints and patient anxiety. Enablers of the collaborative process were found to be: relevance to the research project, early involvement, previous experience with research, panel composition and flexibility. The study has clear practical implications for collaborative involvement of patients and carers in social and health care research.
Version
No full-text in the repository
Citation
Parveen S, Giles S and Din I (2014) A collaborative approach to patient involvement in research: Challenges and enablers. Research Policy and Planning. 30(3): 167-177.
Link to publisher’s version
Link to published version
Link to Version of Record
Type
Article