Consumer engagement in doctoral research – what difference does it make?

STUDY DESIGN: Qualitative reflective descriptive study. OBJECTIVE: To evaluate a consumer engagement experience in the context of doctoral research. SETTING: Full time doctoral research at an Australian university. METHOD: A reflective evaluation of consumer engagement was completed, presented using the Guidance for Reporting Involvement of Patients and the Public, and frameworks of the research cycle, levels of consumer participation and integrated knowledge translation guiding principles providing theoretical background. Seven people with SCI (n = 6 men, n = 1 woman) replied to an expression of interest to join a Consumer Advisory Group for a doctoral researcher. Activities included: four 90-minute meetings, formal and ad-hoc email exchanges, and one-to-one conversations as required. Data sources included meeting transcripts, email correspondence, researcher’s notes, and a short consumer survey. RESULTS: Consumer engagement occurred at each stage of the research cycle and met all guiding principles. Consumers participated at consultation and involving levels, however, collaboration evolved. Enablers included a common interest for the research topic, rapport with the researcher, using a virtual platform to disseminate research findings, supervisory support, and availability of funding. Challenges included complexity in harnessing different perspectives, using a virtual platform for group meetings, time, and consumers’ negative experiences of media. CONCLUSION: Consumer engagement informed doctoral research by promoting nuanced perspectives on the unique experiences of living with SCI, providing unanticipated richness to data analysis. Building trust, and being responsive, led to in-depth consumer participation.