Report to Council from the 2004 CHF / NHMRC Research Project

1. Report to Council from the 2004 CHF / NHMRC Research Project Beth Micklethwaite Consumers’ Health Forum of Australia

2. The Statement on Participation • Collaborating to improve quality • Effective partnerships of researchers and consumers shaping decisions about research priorities, questions and design • Informing any participants and the wider community about research results • Resources for consumer participation CHF / NHMRC Statement on Consumer and Community Participation in Health and Medical Research www.nhmrc.gov.au/publications/synopses/r22syn.htm

3. Attitudes of researchers and consumers • Researchers • Some sceptical of consumer participation • Some willing but unsure of how to do it • Wary of ‘militant’ consumers • Lack of time and funds • Consumers • Interested but not necessarily familiar with research • Wary of ‘arrogant’ researchers • Suspicious of tokenistic involvement

4. CHF / NHMRC Research Project • Implement the Statement on Participation at two pilot sites. • Model framework for consumer and community participation in research. • Resource pack to support consumer participation in research. • Promote the Statement on Participation to researchers and consumers • Progressive evaluation

5. Pilot Sites - QIMR • Queensland Institute of Medical Research • Starting point • Policy on consumer participation • Strong public relations • No real consumer input • Aiming for two-way communication

6. QIMR continued During the project • Consumer & Community Liaison Committee • Identifying consumers • Consumer workshop • Scientific Conference • Underlying concerns of researchers • Reflection on own practice

7. Pilot Sites - NARI National Ageing Research Institute Starting point • Volunteer Network • Tai-chi • Volunteer lunches • Consumer member on Board • National President of Council on the Ageing

8. NARI continued During the project • Consumer Participation & Priorities Workshop • Participation policy • Dissemination of results • Increased awareness of researchers

9. Model Framework & Resource Pack • Model Framework – for researchers • Resource Pack – for consumers • “I think it is all very constructive and there is nothing wrong in pointing out weaknesses in a constructive way, especially if you want something to come from a report, not just for it to be shelved!” Basic researcher

10. Raising Awareness • Articles in consumer and researcher newsletters • 10 articles about research in Issues 2 and 3 of The Australian Health Consumer , 2003 - 04 • Workshops – NARI, QIMR, CHF, Mental Health • Conferences – QIMR, INVOVLE, AHMRC • Webpage – www.chf.org.au/projects/research

11. Where to now? • Provide support for local partnerships • Build partnerships with active researchers at national level • CHF looks forward to renewing partnership with NHMRC in 2005 • Improve strategies for consumer participation in deciding national research priorities • Fund research into agreed priority areas

12. Key contributors Pilot Sites Queensland Institute of Medical Research National Ageing Research Institute Reference Group Christopher Newell Chair (CHF) Christopher Coyne AHEC Elizabeth Grant Research Committee Sophie Hill Health Advisory Committee Michele Kosky CHF Sue Pluck CHF