Kupu Taurangi Hauora o Aotearoa
Health and Disability Consumer
Representative Training
MODULE TWO
Experience base
Welcome and introductions
Who you are
Where you’re from
What you want to get out of the training today
• The NZ health and
disability environment
• Defining consumers
• Quality improvement
• Consumer
engagement
• Leadership
• Co-design
• Peer support
• Your experience
• Roles &
responsibilities
• Meetings
1.
Health and
disability context
2.
Experience
base
4.
Partnership
3.
Evidence base
• Inequities
• Research
• Clinical trials
Experience base
• Your experience
• Roles &
Responsibilities
• Meetings
Health and
disability
context
Experience
base
Partnership
Evidence
base
Goals for the day
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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.
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.
Examples of stories
www.breastcancer.org.nz/Share-your-story/webvideos
www.likeminds.org.nz/resources/people-like-you/
www.hqsc.govt.nz/our-programmes/consumerengagement/video-library/
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, 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?
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Outcome: How did the outcome feel? Why did it feel that way?
Would you have preferred another outcome?
Consumer representation
Roles and responsibilities
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.
Your role as a health and disability
consumer representative
• 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.
Types of consumer
representative involvement
Partner
Valued for significant knowledge as a consumer.
Expert
Recognised for high quality level expertise.
Advisor
Providing opinion and guidance from a
consumer perspective to influence decisions.
Advocate
Representing 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
Elements of an effective
consumer representative
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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.
Getting involved
• 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.
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
• 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
Where health and disability consumer
representatives can participate
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Local consumer networks
National and regional bodies
Local health committees
DHB committees
Project groups
Workshops
Government agency meetings (eg, HQSC)
Consumer forums
Meetings – the 3 Ps
Prepare
Participate
Present
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)
Health Quality & Safety
Commission Consumer Network
Prepare
• 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.
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.
Present
• 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.
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.
Questions?
Comments?
Evaluation