Introduction: Melanoma Research Victoria (MRV) is a clinical research cohort established to bring together clinicians, researchers, and consumers and has over 3500 participants and more than 56,000 biospecimens available for research. Consumer involvement was intentionally embedded through membership of the Governance Committee; as a consumer reference group since 2010; and a research project review group in 2020. Evaluation of this model was undertaken to determine whether the framework sustains consumer-led research.
Methods: An evaluation tool adapting the VCCC Alliance Model of Consumer Engagement was developed to benchmark defined consumer engagement activities between 2010 and 2020. Internal validation by 3 independent assessors obtained consensus data. A mixed methods survey was conducted to understand stakeholder perception of consumer-led research.
Results: A total of 645 consumer engagement activities identified were classified into Informing (24%); Consulting (16%); Involving (20%); Partnerships (21%); and Consumer-led (19%) levels of participation. An increase of activities within each level was observed over time and overall activity increased 2.5-fold in the period assessed. The majority of Consumer-led activities were advocacy-based and not research-based as defined by research prioritised by patients. Perceptions of consumer-led research differed by stakeholder group from: consumers in leadership roles with researchers (clinician researchers, n=14), research direction contributions (researchers, n=8) or any involvement in research (consumers, n=15). Perceived barriers from all stakeholders to conduct consumer-led research were differing expectations and communication, lack of consumer knowledge and commitment, and varying priorities.
Conclusions: The evaluation tool provides a robust mechanism to quantify consumer engagement activities for monitoring baseline data. MRV has evidence of consumer involvement in research, however, there are limited examples of consumer-led research according to the definition used. Clarity of roles with accompanying supports and education as identified in this study will aid stakeholder participation.