Consumers can play a valuable role in project or steering committees by offering insights from a lived experience perspective. Their involvement may occur at various levels, including government, professional bodies, organisational boards or sub-committees, and research/healthcare improvement projects.
All committees should have a Terms of Reference (ToR) that clearly outlines: the committee’s purpose, structure, and scope; objectives and expected outcomes; roles and responsibilities of members; operational procedures; conflict of interest processes; and confidentiality expectations.
The role of the consumer will vary depending on the committee’s focus. It may include: contributing to plain language summaries; reviewing project milestones, risks, and challenges; providing feedback and advice; and advocating for the project’s direction and outcomes, both during and after its completion.
In a clinical trial exploring a new treatment for chronic kidney disease, two consumer representatives were invited to join the project’s steering committee to ensure patient-centred decision-making remained at the heart of the research.
The committee brought together a diverse group of stakeholders, including a person with lived experience, a carer, researchers, nephrologists, and nurse specialists.
Consumers played a key role in shaping the trial by:
- Reviewing recruitment materials to ensure flyers and documents were clear, accessible, and easy to understand.
- Advising on recruitment strategies, with a focus on reaching underrepresented communities and leveraging their own networks.
- Raising concerns about participant burden, which led to the introduction of home-based monitoring and telehealth consultations.
- Refining patient-reported outcome measures to capture not only clinical data but also the impact on quality of life.
Their involvement led to a more inclusive and accessible trial design, ultimately strengthening participant recruitment and retention.
As part of a quality improvement initiative to enhance patient satisfaction with hospital meals, a steering committee was formed comprising two former patients, a carer, senior hospital management, dietitians, and food service staff.
Consumers shared their personal experiences with hospital meals, highlighting concerns around meal quality, variety, portion sizes, and temperature at the time of delivery. In collaboration with the broader committee, several key improvements were introduced:
- Expanded menu options to include culturally diverse and dietary-specific meals
- Meal delivery tracking systems to ensure meals arrived fresh and on time
- Protected mealtimes to minimise interruptions and support a better dining experience
These changes led to measurable improvements, including higher patient satisfaction scores, reduced food waste, and better nutritional intake.
Resources
For practical strategies on how to include consumers in an existing project or steering committee, and for insights on consumer ‘representativeness’, explore the resources below: