Evaluation of the impact of patient and public involvement on doctoral students in palliative dementia care research.

BACKGROUND

Patient and Public Involvement (PPI) has moral and practical importance by empowering stakeholders to influence research. Research by doctoral students is a major component of accepted research and research training, yet the literature on meaningful PPI in this area is limited. We aimed to provide insights into the impact of PPI in doctoral research and education, and integrate the findings with identified published evidence to develop the Empowering Better End of Life Dementia Care (EMBED-Care) Guideline for Reporting and Evaluating PPI in doctoral research for future evaluations.

METHODS

Documentary analysis was undertaken of the PPI panel meeting notes and written reflections by doctoral students from the five doctoral projects in the EMBED-Care programme. The data extracted were analysed using a deductive thematic approach guided by Staley's INVOLVE framework comprising nine themes (research agenda, design and delivery, ethics, impact on public involved, researchers, participants, wider community, community organisations, wider change). To compare and interpret the findings, a literature review in PUBMED identified published evidence on PPI in doctoral research with final data integration to construct the guideline.

RESULTS

There was at least one impact of PPI identified in each of the nine respective themes with the most common being 'impact on research design and delivery'. The identified impacts were universally described as positive for the doctoral students, their projects, PPI members and the wider community. Published studies (n = 21) reporting PPI in doctoral research echoed findings of positive benefits, but the methods to utilise PPI and the reporting on outcomes were inconsistent. The EMBED-Care Guideline for Reporting and Evaluating the Impact of PPI on doctoral research was constructed to standardise PPI reports and information collected, and reflection on the impact and outcomes, to facilitate evaluation of impact in future research.

CONCLUSIONS

PPI primarily benefited research design and delivery, but had a variety of social benefits to the researchers, public members, study participants and wider communities. The findings demonstrate the vital role of PPI in the academic development of doctoral students to enhance skills and expertise, and research design and delivery.