1. SCHOOL OF PUBLIC HEALTH & COMMUNITY MEDICINE  THE UNIVERSITY OF NEW SOUTH WALES  SYDNEY  AUSTRALIA Consumer & community participation in research Sally Nathan

2. Background to framework  Developed by NHMRC & CHF  Began with Statement published in 2001  Then developed framework and resource pack published in 2004 which was piloted at two sites  Currently being implemented by NHMRC

3. The vision  Consumers and researchers will collaborate drawing on each others knowledge to strengthen research quality  The partnership will shape research priorities, research questions and study design in a way that recognises rights of all voices to be heard  To supports rights of research participants to their own results and accountability to them in disseminating results

4. Why?  Research is a powerful tool and can have a profound effect on the lives of consumers and communities – they therefore have a right to participate in its development  Accountability back to the community for research that is funded primarily through public dollars  Increased relevance of research to those who may benefit and more likely to be taken up!  Consumers/communities better understand value of research and become advocates for funding

5. Some more specific benefits  Research questions include issues that matter to consumers/ communities (involve them in grant development process)  Methods used are more appropriate and acceptable to participants  More accessible information for participants eg. lay summaries  Assistance with recruitment of participants  Assistance with data collection

6. Audience for the framework ?  A research organisation eg. Garvan, CCGRH  A research team eg. focused on refugee health  Individual researchers  Consumer and community organisations  Funding agencies  Ethics committees

7. How to involve?  Deciding what to research  Deciding how to do it  Doing it  Letting people know the results  Deciding what to research next

8. First steps  Audit current level of participation  Consider barriers and enablers  Identify consumer or community groups who might want to participate  Hold a workshop or meeting with these groups eg. meeting in SSW with consumer reps  Consumer and staff training

9. Some possible approaches  An Advisory Committee (eg. Consumer Advisory Panel for accreditation research)  Involving a community organisation/ consumer group as a partner in a specific area of research eg. Asthma groups  Keeping relevant stakeholders informed and work with them in disseminating results

10. Over to you!  What partnerships currently exist within the school with consumer and community groups? How do they operate?  Are there other areas of research where consumer/community partnerships are possible/ would be valuable?  How can we increase the engagement of the School and associated Centres with the community?