Five ways to ensure meaningful consumer participation in healthcare innovation
Updated: Nov 4, 2022
By Dr Shawn Goussous and Lisa Milani, Co-Founders of NanoCube
Consumer participation in clinical research is increasing. While considered best practice, it's not yet a standard practice in Australia. 'Nothing about us, without us' It's a powerful slogan used by activists in the disability movement to declare that policy should be informed by full and direct participation of people affected by the policy. The phrase has subsequently been used by a range of special interest groups and movements. It's also been used to give voice to the idea that those who are affected by research have a right to influence what is researched and how it is done. The benefits of consumer participation in research was summarised in the Statement on Consumer and Community Involvement in Health and Medical Research. The statement sets out a vision of: 'Consumers, community members, researchers and research organisations working in partnerships, to improve the health and wellbeing of all Australians through health and medical research’. (National Health and Medical Research Council and the Consumer Health Forum of Australia) Consumer involvement in research and healthcare innovation more broadly:
improves the relevance of research to patient needs
ensures more effective research translation into real life patient benefits, such as improved clinical practice, new medical innovations or health service delivery approaches.
serves as a validation process by confirming (or denying) assumptions about the desirability, viability or feasibility of the innovation
decreases overall costs by ensuring funding and resources are used efficiently on priorities that benefit the primary beneficiaries - health consumers.
supports the dissemination of research results
improves public confidence in research, especially in novel areas of discovery.
The full benefits of consumer participation are unlikely to be realised if:
The project team are uncertain about how to involve consumers
The project team do not have an appreciation of the value of consumer voice, or
If consumers are unsure of what's expected.
Five ways to ensure meaningful consumer participation in healthcare innovation: Consumer engagement needs to be supported and championed by organisational leadership This includes boards, executive and middle management. A serious commitment to consumer engagement needs to be supported and driven from the top-down, and championed from both the bottom-up and top-down. The goal is to build an organisational culture, at all levels of the organisation, where consumers' contribution is genuinely acknowledged and deliberated upon in policy and decision-making. A culture whereby consumer voices authentically guide the board in their governance of the organisation. Leadership buy-in is critical for this to happen. Purposely select the type of involvement sought, and be clear on the purpose of consumer participation. There is a spectrum of participation types and corresponding levels of consumer involvement. All participation types - informing, consulting, involving, collaborating and empowering - may be in scope or just one may be selected. The type of engagement sought may be decided by the research team, or if a more transformative participation model is adopted, may evolve based on consumers perceptions of their participation. Clarity on the purpose of consumer participation helps consumers engage more effectively and ensures participation activities achieve their desired aims. Consider that multiple, intentionally selected strategies for participation improves the overall effectiveness of consumer involvement. Ensure recruitment strategies reach diverse consumers Engagement of diverse consumers in health service design, service development, implementation and evaluation is considered best practice. This diversity adds to the richness of perspectives and viewpoints, and provides a better representation of the relevant population. Consumers may be considered diverse due to:
Aboriginal and/or Torres Strait Islander status
Culturally and Linguistically Diverse (CALD) background
Identifying as LGBTIQA+, and/or
Living in a rural/regional area
Reaching diverse consumers in recruitment efforts requires conscious effort. This may, for example, involve engaging diverse consumers and communities via relevant peak bodies or consumer representative groups. Building trusting and genuine relationships is key. Rollout Consumers in Research Training and implement appropriate support structures If it's a once off session, such as a survey or focus group, formal training may not be needed. Instead an introduction would suffice. However, training would be required as a precursor to activities like a series of advisory committee meetings or consumers undertaking interviews with research participants. A skill audit is useful to assess the training needs of participants. Consumer focussed training also needs to be inclusive of the broader research team to ensure a shared understanding of:
The role of consumers in the research cycle
How to foster psychological safety
Barriers to consumer engagement and how to overcome these
How to work effectively as a member of the partnership between researchers and consumers.
Support structures such as opportunities for debriefing and mentoring are also critical to promote and maintain the psychological safety and well-being of consumer participants. While not outlined in detail here, there are a range of unique considerations for the meaningful, safe engagement of diverse consumers. Support structures therefore need to consider the heterogenous needs of participants. Communication (including resources) must also be accessible to enable inclusive involvement. Make sure there are resources allocated to do it justice A shortage of funding can be a significant barrier to effective consumer involvement. Consumer participation in clinical research requires careful planning, training and adequate support to enable participants to meaningfully and safely participate. Remuneration for consumers time and expertise also needs to be budgeted for, alongside other out of pocket expenses such as travel costs to attend meetings.