Project or Steering Committee
Consumers may be involved as members of a larger project or steering committee to provide broad oversight and input from a lived experience perspective. This involvement may be for a government, professional body or organisation level committee, a board or board sub-committee or a research project. All committees should have a Terms of Reference that clearly state the purpose and structure of the committee, its objectives and scope, the roles and responsibilities of the members, the method of operation, as well as conflict of interest processes and confidentiality expectations. The role of the consumer will depend on the business of the committee and may include assisting with plain language summaries, reviewing project milestones, risks and threats, providing input and advice about the direction of a project including advocacy prior to and on completion of the project.
In a clinical trial looking at a new treatment for chronic kidney disease, two consumer representatives have been invited to sit on the project’s steering committee to ensure patient-centred decision making. The steering committee membership includes a person with lived experience, a carer, researchers, nephrologists and nurse specialists. Consumers played a key role in reviewing trial materials for recruitment, ensuring that flyers and documents were easy to understand and accessible. They also provided input on trial recruitment strategies, emphasising the need to reach underrepresented communities and provided access to their networks. Concerns about the burden of frequent hospital visits as part of the trial, led to the introduction of home-based monitoring and telehealth consultations. Consumers also helped to refine patient-reported outcome measures, making sure to capture quality of life impact as well as clinical markers. Their involvement led to improvement in trial accessibility and strengthened recruitment and retention of participants.
In a quality improvement initiative to improve patient satisfaction with hospital meals, a steering committee made up of two past patients, a carer, hospital senior management staff, dietitians and food service staff to guide the project was formed. Consumers shared their experiences with hospital meals, particularly around meal quality, variety, portion sizes and the temperature of the meals upon arrival. In discussion with other members of the steering committee, an expanded menu was developed to include culturally diverse and additional dietary-specific choices. Additionally meal delivery tracking and protected meal times were introduced and enforced to ensure meal freshness. These changes led to higher patient satisfaction scores, reduced food waste and improved nutrition intake.
Resources
For practical strategies on including consumers on an established project or steering committee and for detailed guidance on what being part of a committee may look like from a consumer representative’s perspective, please see the resources below: