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

2. Welcome and introductions
Who you are
Where you’re from
What you want to get out of the training today
Allow time for each participant to introduce themselves and what their expectations are of the day including what they hope to get out of the training.
If participants have not attended Module One, introduce yourself and give some background to your own involvement in health.
Explain the housekeeping points such as where the fire exit/s are, the location of toilets, when morning and afternoon tea and lunch will be.
Establish ground rules – ask participants to give you any they have but include, confidentiality and respecting each others views.

3. Health and disability context
The NZ health and disability environment
Defining consumers
Quality improvement
Consumer engagement
Your experience
Roles & responsibilities
Meetings
Health and disability context 1
Experience
base 2
Partnership 4
Evidence base 3
Leadership
Co-design
Peer support
Inequities
Research
Clinical trials
Again, if participants were not at the first module explain the modular framework and the individual module content.

4. Health and disability context
Your experience
Roles & responsibilities
Meetings
Health and disability context 1
Experience
base 2
Partnership 4
Evidence base 3
Explain that today’s module is about experience based health and disability that includes:
Your experience
Roles and responsibilities
Meetings

5. Goals for the day
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.

6. Stories
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.
It is important to note that people are prepared for situations where not everyone will validate their experience or question them about it. It would be useful to get some discussion on this to gain different views.
The following slide gives examples of comments from clinicians and consumers and their family members of telling their story from their perspective and how the consumer is seen as an equal partner in the clinical setting.

7. Examples of stories
care/video-library/
and-safety-challenge-2012/projects/patient-stories/
You can show these videos now or through the lunch break, or show one and the others later in the day.
Explain these are examples of narratives, or stories (watch these first before the day to ensure you have an understanding of them).
The breast cancer videos are an example of how health professionals and consumers worked together to produce a resource about breast cancer.
The HQSC videos are organised into videos of:
Commission consumer network members
Commission consumer representatives
Maori responsiveness
Patient, consumer and family/whānau stories
Provider stories
Show & Tell symposia
For the purposes of this module it would be best to choose ones from the patient, consumer and family/whānau and provider list. Refer to the Facilitator’s Guide.
After viewing all or an example of the previous videos, discuss with the participants what impact these stories have made on them.

8. Telling and using your story
‘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 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?
Storytelling, or narratives, is how we share experiences with each other.
The purpose of this exercise is to enable participants to think about a critical time in their health (often at diagnosis of a serious illness, but can be another time) and how this shaped their views about services. For some people with disabilities this may be different. For example, a hospital admission where their pre-existing condition (disability) is not taken into account, or conversely, seen as a ‘health issue’.
Group Work:
Split the participants into 3 groups and ask them to discuss and give examples of their various challenges, choices and outcomes. See Facilitator’s Guide.
Have a break after this exercise.
(Marshall Ganz is a senior lecturer in public policy at the Kennedy School of Government, where he teaches, researches, and writes on leadership, organization, and strategy in social movements, civic associations, and politics. He has published in the American Journal of Sociology, American Political Science Review, American Prospect, Washington Post, Los Angeles Times and elsewhere.)

9. Roles and responsibilities
What is the role of a consumer representative?
How does a consumer representative carry out their role?
What different ways can consumers be involved?
Introduce this as the next topic and what it will be covering – what it means, getting involved and different types of consumer representation.

10. The role of a consumer representative
Represent the broad views and experiences of people affected by ill health and disabilities, including those unable to represent themselves.
Bring your own experience – and those of others you know and/or network with.
Seek improved access to health and disability services, information, support and coordinated care.
Invite a guest speaker such as a consumer representative to talk to this and the next slide. Or, speak to the slides yourself, giving examples from your own experience if relevant.
As a health and disability consumer representative, your role is to:
represent the broad views and experiences of people affected by ill health and disabilities, including those unable to represent themselves.
bring your own experience and those of others you know and/or network with.
seek improved access to health and disability services, information, support and coordinated care.

11. How consumer representatives make a difference
Supporting and promoting people’s health care rights.
Supporting health policy initiatives that focus on the availability, safety and quality of care.
Working for positive change in the health and disability sector, including improved access to treatment and care setting.
Working to ensure systems are inclusive and engaging.
Group exercise: Ask participants to share in pairs how they have been involved in supporting others, or know someone who has. Share feedback – giving examples.
Hand out a sample position description – (Note this is being updated – July 2017)

12. Types of consumer representatives
Experience-based consumers: Currently receiving or have received treatment and care.
Representative/advisor consumers: Represent health and disability groups/networks.
Carers: Provide support and/or care to a consumer on a voluntary basis and will speak on their behalf, if needed.
Family/whānau and aiga: Those who consumers want to be engaged with in their ongoing support, treatment and care.
Consumer group or organisation: Can be any type of consumers, or a mix of types.
The Commission has adopted these definitions for the purposes of the Partners in Care programme.
Experience-based consumers: Individuals who are currently receiving or have received treatment and care for an illness or disability (eg, a patient, client, service user, resident or disability consumer). Their insights and experience are important for health providers to understand when designing and improving services.
Representative/advisor consumers: Experience-based consumers who represent health and disability groups or networks.
Carers: People who provide support and/or care to a consumer on a voluntary basis and will speak on behalf of those receiving care, if they are unable to speak for themselves.
Family/whānau and aiga: Family/whānau and aiga are usually identified by consumers as people who they want to be engaged with in their on-going support, treatment and care.
Family/whānau, aiga and carers can offer valuable insights that influence the health experience for the consumer. Their involvement with experience based consumers sometimes has a significant impact on their own lives and the relationships they have with the consumer and health providers.
Consumer group or organisation: Can be made up of experience based consumers, family/whānau and aiga, or a mix of all types of consumers

13. Ways to be involved
Cancer Australia and Cancer Voices Australia Types of consumer involvement, excerpt from Australian National Framework for Consumer Involvement in Cancer Control.
framework-consumer-involvement-cancer-control
Explain that this is not necessarily hierarchical but does show the different levels where consumers can be involved. Ask participants where they might see these roles being applied. For example, there are consumer roles that are contracted or directly employed by District Health Boards and NGOs.
(from Australian National Framework for Consumer Involvement in Cancer Control

14. Getting involved As a committee member for consumer groups/networks.
As a consumer representative at meetings, eg:
Health Quality & Safety Commission
DHB committees
ACC
local health committees
national or regional bodies.
As a member of a project group, advising on specific issues, or helping to design new or improved services/resources.
As a participant in workshops or focus groups, sharing. information and developing a shared approach to issues.
As a committee member for:
consumer groups
local consumer networks
As a consumer representative at meetings for government and non-government agencies, such as:
Health Quality & Safety Commission
DHB committees
ACC
local health committees
national or regional bodies
As a member of a project group:
guiding the project from a consumer’s perspective
advising on specific issues
helping to design new or improved services (such as an in-patient booking system)
Helping to design new resources (such as a patient information brochure)
As a participant in workshops or focus groups:
sharing information
developing a shared approach to issues

15. Resources supporting consumer engagement
(co-designed by us with consumers and providers)
Some examples of resources that the Commission has produced with consumers’ help, which were used for Patient Safety Week

16. Skills and attributes
Passion – a desire to make things better for others.
Self-reflection – using your own health experiences.
Networking – building partnerships and alliances.
Knowledge – understanding the system, researching, analysing.
Collaboration – working collectively to find solutions.
Courage – to speak up and give your opinion.
Persistence – change takes time!
There are specific skills and attributes required to be effective as a consumer representative:
Passion – a desire to make things better for others. Acting as an advocate for people who aren’t in a position to advocate for themselves.
Self-reflection – using your own health experiences (or those of your family, or people you provide care for) to form your perspectives.
Networking – building partnerships and alliances, working with communities and/or consumer groups to gain a broader perspective on issues (eg being part of a peer-support network where people they can articulate and share new information and discuss ways to improve services).
Knowledge – understanding how the system works, reading, researching and analysing information. Acting as an antennae on issues to be aware of what’s happening in the sector.
Collaboration – striving to improve your ability to work collectively to find solutions to issues or problems.
Courage – to speak up and give your opinion, even though it might feel uncomfortable sometimes.
Persistence – change takes time!

17. Enablers and barriers Enablers Barriers 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
Ask participants to work in pairs for 5 minutes and make a list of what they see are enablers and barriers to working as a consumer representative.
2. After their feedback, provide participants with a copy of the paper “Consumer Representation – Enablers and Barriers” adapted from a presentation by Jo Innes, project manager TAS, presenting to the Central Cancer Network consumer representative group regional forum (2009).

18. Meetings – the 3 Ps 1. Prepare 2. Participate 3. Present
Suggest leave this up and have a break before starting on the rest of the programme.
Note: The Health, Quality and Safety Commission has a series of videos with consumer representatives sharing their experiences of being involved in the Commission’s work programmes. These are useful and informative and will help to provide insight to this topic of Meetings – programmes/partners-in-care/video-library/

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.
It is important to note that in preparing for a meeting, from the participants perspective, there needs to be consideration for the needs of individuals with various disabilities. So not only what the participant needs to prepare for but also the facilitator for the meeting.
Adapted from “Removing Barriers: Planning Meetings That Are Accessible to All Participants”, North Carolina Office on Disability and Health, 2005
(Adapted from “Removing Barriers: Planning Meetings That Are Accessible to All Participants”, North Carolina Office on Disability and Health, 2005)

20. Health Quality & Safety Commission Consumer Network
There are different types of meetings – informal and formal – and can be held at different places. This is a meeting of the Health Quality and Safety Commission’s Consumer Network where Arawhetu Gray, Maori advisor for the Commission was presenting (2014).
Information about the network can be found on the Commission’s website at -

21. Martine Abel (2014–present)
Courtenay Mihinui (2015)
Renee Greaves (2015)
Marj Allan (2015)
Shaun McNeil (2015)
Shreya Rao (2015)
Ezekiel Robson (2015)
Te Rina Ruru (2014–present)
Traci Stanbury (2015)

22. 1. Prepare
Be aware of any conflict of interest you may have to declare.
Be clear on the purpose of the meeting.
Do your homework: review the agenda and clarify your understanding.
Know what is expected of you.
Find out who else will be attending.
Gather and read all relevant background information.
Speak to these next three slides.
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.

23. 2. Participate 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.

24. 3. Present Check minutes are accurate.
Provide feedback to your organisation or group.
Keep in touch with other committee members.
Reflect on decisions made, and your contributions.
Debrief with mentor or other consumer representative/s.
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.

25. Summary
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.

26. Questions? Comments? Evaluation
Hand out the Evaluation sheet to all the participants and ask them to fill it in. Explain that this can be helpful for future programme developments.

27. Kupu Taurangi Hauora o Aotearoa