1. So What Do The Consumers Think? Developing a Model of Paediatric Asthma Education Mr Craig Moore Paediatric Asthma Educator Dr Claire Harris Project Manager Ms Fiona Wilkinson Senior Project Officer

2. Partnership for clinical effectiveness Academic and hospital Community and local government General Practitioners State government Advocacy groups Research

3. Health for Kids in the South East To improve health outcomes for children and young people in the Southern Health catchment through Best practice Partnerships

4. Strategies HFKSE GP Integration Strategy Cuture of Clinical Effectiveness Strategy Innovative Hospital Services Strategy Clinical Practice Guidelines and Pathways Strategy Community Health Strategy Community Asthma Education Service Consumer Representation

5. Community Asthma Education Service To provide health education to children with asthma and their families To link with and enhance existing health promotion activities in the community, school and early childhood settings in partnership with the Asthma Foundation of Victoria To provide education to GPs, MCHNs, pharmacists and other community health providers so that patients receive consistent information

6. A History Lesson 1982: Victorian Mental Illness Awareness Council 1991: Mental Health Statement of Rights and Responsibilities 2001: Southern Health Consumer Advisory Committee established 2006: DHS launched ‘Doing it with us not for us’

7. How We Did It Plan Recruit Educate Support Involve Value Review

8. Plan Recruit Educate Support Involve Value Review

9. Plan Existing structures – Asthma Foundation of Victoria – Australian Association for the Wellbeing of Children in Healtcare (AWCH) Literature review of resources – ‘Improving Health Services through Consumer Participation: a resource guide for organisations’ (Dept of Health and Ageing) Health for Kids Consumer Participation Plan – Key practical strategies in rolling out a Consumer Participation program across the program

10. Plan

11. Inclusion Criteria – Must have asthma – Or care for a child with asthma – Live in Melbourne’s SE suburbs Exclusion Criteria – Requires an interpreter – Had other agenda

12. Plan Recruit Educate Support Involve Value Review

13. Recruit Advertise with posters – Maternal and Child Health Centres – Outpatients – Wards – Emergency Department – Community Health Centres – Libraries Media release Targeted recruitment

14. Recruit

15. Plan Recruit Educate Support Involve Value Review

16. Educate Introductory meeting Facilitator Explain role Manage expectations Set ground rules around feedback

17. Plan Recruit Educate Support Involve Value Review

18. Support Reimburse expenses – Childcare – Carparking – Travel costs – Meals Debrief Champion role to others Refusal to participate – is ok!

19. Plan Recruit Educate Support Involve Value Review

20. Involve Format: – Steering Committees – Project Management Group – Casey Asthma Working Group – Forums – Service reviews – Survey design – Consultation sessions Information overload? Fax, email, post, face-face, etc Hands-on tours

21. Plan Recruit Educate Support Involve Value Review

22. Value Feedback forums – Tell Consumer Representatives what they have done – Demonstrate how they assisted the project Overtly value the consumer perspective as being equal to others

23. Plan Recruit Educate Support Involve Value Review

24. Outcome of involvement Feedback on the role Evaluation of process Mainstream into wider healthcare program – “core business”

25. The Future Include the consumer perspective in everything we do Advocate for the inclusion of participation around public policy in the tertiary education of health professionals Mandate consumer participation activities in PDs Include a consumer on job interview panels View complaints by consumers as a gift