• A collaborative approach to patient involvement in health research: challenges and enablers

      Parveen, Sahdia; Giles, S.; Din, I. (2014)
      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 backgrounds, 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.