Our Consumer and Community Participation Policy covers all research projects undertaken at the School.
Each research project is unique and there are varying levels of consumer and community participation.
The University of Western Australia School Population Health (the School) and the Telethon Kids Institute (the Institute) recognise the central role of health consumers and community members in its research. Our aim is to build partnerships in which consumers, community members and researchers work together to make decisions about research priorities, goals, methodologies, questions, and dissemination of results.
This aim is aligned with the Memorandum of Understanding between the School and the Institute and the National Health and Medical Research Council (NHMRC) and Consumers Health Forum’s Statement on Consumer and Community Participation in Health and Medical Research.
This policy covers all research undertaken at the School and the Institute. It is acknowledged that each research project is unique and there will be varying levels of consumer and community participation depending on the research project.
The National Health and Medical Research Council / Consumer Health Forum Statement provide the following definistions:
- Patients and potential patients
- Organisations representing consumers’ interests
- Members of the public who are targets of health promotion programs
- Groups asking for research because they believe that they have been exposed to potentially harmful circumstances, products or services.
- A group of people sharing a common interest – for example, cultural, social, political, health, economic interests – but not necessarily a particular geographical association.
- Consumers and the community will be acknowledged as a key stakeholder in all research undertaken at the School and the Institute.
- Consumers, the community and researchers will work together to add value to research at the School and the Institute.
- Partnerships between consumers, the community and researchers will be based on mutual respect for one another’s different knowledge and experience.
- Partnership roles will be decided by consultation between consumers, community and researchers.
- Consumers and community members will be provided with all information related to fulfilling these roles.
- Consumers and community members will be required to comply with following policies:
- Consumers and community members will be offered remuneration for the contributions they make to the partnership.
- Consumer and community participation will be evaluated in consultation with consumers, community members and researchers, and made available to the public.
Governance and Ethics
- The Consumer and Community Advisory Councils will be supported by the Participation Unit.
- The Consumer Advocate will provide regular reports on the activities of the corresponding Council to the Head of School and the Director of the Institute.
- Consumer and Community Advisory Council membership and Terms of Reference will be reviewed every two years.
The establishment of effective partnerships between consumers, the community and researchers will:
- Add value to evidence based research at the School and the Institute.
- Facilitate and enhance understanding of consumer and community priorities, perspectives and issues.
- Enhance the planning, conduct and analysis of the School’s and the Institute's research programs.
- Enhance the dissemination of research findings and increase translation into policy and practice.
- Provide increased opportunities to obtain funding for research which addresses the needs and priorities of the community.