1. Kupu Taurangi Hauora o Aotearoa

2. Health and Disability Consumer Representative Training MODULE TWO Experience base

3. Welcome and introductions Who you are Where you’re from What you want to get out of the training today

4. Inequities Research Clinical trials Leadership Co-design Peer support Your experience Roles & responsibilities Meetings The NZ health and disability environment Defining consumers Quality improvement Consumer engagement 1. Health and disability context 2. Experience base 3. Evidence base 4. Partnership

5. Experience base Your experience Roles & Responsibilities Meetings Health and disability context Experience base Evidence base Partnership

6. To understand how stories you have as a health and disability consumer contribute and are integral to service delivery improvement. To build on the knowledge and skills you have as a health and disability consumer representative. To describe the various levels of health and disability consumer participation. To increase your confidence and capability to participate as a health and disability representative. Goals for the day

7. Telling personal stories gives people the opportunity to share their experiences of the quality of the care they received – both positive and negative aspects. Personal experience stories acknowledge the expertise of the consumer. Patient stories can provide staff with a broader understanding of what it’s like to receive care in their service. Stories

8. Examples of stories www.breastcancer.org.nz/Share-your-story/web- videos www.likeminds.org.nz/resources/people-like-you/ www.hqsc.govt.nz/our-programmes/consumer- engagement/video-library/

9. Telling your story is a way to share the values that define who you are. As a lived experience around choice points – when you faced a challenge, made a choice and experienced an outcome. (Marshall Ganz 2011) Storytelling, or narratives, is how we share experiences with each other. Challenge: What was your initial response as a consumer and/or family/whānau member upon hearing the diagnosis? Choice: What choices were made about treatment? Outcome: How did the outcome feel? Why did it feel that way? Would you have preferred another outcome? Telling and using your story

10. Roles and responsibilities Consumer representation

11. Health and disability consumer representatives Support and promote people’s health care rights. Support health policy initiatives that focus on the availability, safety and quality of care. Work for positive change in the health and disability care system including improved access to treatment and care setting. Work to be inclusive and engaging.

12. To represent the broad views and experiences of people affected by ill health and disabilities, including those unable to represent themselves. To bring your own experience and those of others you know and/or network with. To seek improved access to health and disability services, information, support and coordinated care. Your role as a health and disability consumer representative

13. PartnerValued for significant knowledge as a consumer. ExpertRecognised for high quality level expertise. AdvisorProviding opinion and guidance from a consumer perspective to influence decisions. AdvocateRepresenting the views and experiences from those affected by cancer. Personal engagement Providing a personal perspective through narratives, surveys and focus groups. Adapted from the Australian National Framework for Consumer Involvement in Cancer Control, 2011 Types of consumer representative involvement

14. Elements of an effective consumer representative Passion. Building partnerships and alliances. Knowing how the system works. Acting as an antennae on issues. Being persistent, change takes time. Advocating for people affected.

15. As a committee member on a consumer group. As a consumer representative for a government or non-government agency. As a member of a project group to advise on specific issues and to guide the project from a consumer perspective. Participant in workshops or focus groups to share information and develop a shared approach to issues. Getting involved

16. Enablers and barriers Enablers Leadership Good knowledge of consumer groups Terms of reference Support and resourced Built in to policy Seeing ‘how it works’ Being open minded and having values about respect, dignity, trust Mentoring, networks Barriers Misunderstanding about contribution and role Lack of awareness Poor support and resources Fear that costs will escalate and power will devolve Not knowing how to access ‘suitable’ patients and consumers Previous bad experience on a group or committee

17. Where health and disability consumer representatives can participate Local consumer networks National and regional bodies Local health committees DHB committees Project groups Workshops Government agency meetings (eg, HQSC) Consumer forums

18. Meetings – the 3 Ps Prepare Participate Present

19. Planning a barrier-free meeting The room should be wheelchair usable, and allow access for participants with sensory, physical and communication disabilities. Participants be given, if requested, large print, assistive listening devices or sign language interpreters. Activities such as breaks, off-site tours, social activities, must be accessible to everyone. (Adapted from the North Carolina Office on Disability and Health, 2004)

20. Health Quality & Safety Commission Consumer Network

21. Be aware of any conflict of interest you may have to declare before or during the meeting. Be clear on the purpose of the meeting. Do your homework: review the agenda and clarify your understanding beforehand. Know what is expected of you. Find out who else will be attending. Gather and read all relevant background information. Prepare

22. Declare any conflict of interest if relevant. Be prepared with your contribution. Pay attention – listen actively to the discussion, ask questions and get involved. Be courteous but clear on your perspective. Make notes to give feedback to your group/organisation. Be aware of potential issues and provide possible solutions. Participate

23. Check minutes are accurate. Provide feedback to your organisation or group – including details of issues, decisions made, plans for follow-up. Keep in touch with other committee members – it helps build relationships and keeps you in touch with developments. Reflect on decisions made, your contributions, main discussion on particular issues, and decisions made. Debrief with mentor or other consumer representative/s present. Present

24. Understanding your consumer journey and being able to describe and reflect on it builds your expertise as a health and disability consumer representative. There are different levels of consumer involvement and at all levels consumer representatives need to be ‘sitting at the table at the time’ to contribute. Summary

25. Questions? Comments? Evaluation