Kupu Taurangi Hauora o Aotearoa
Health and Disability Consumer
Representative Training
Welcome and introductions
Who you are
Where you’re from
What you want to get out of the training today
• The NZ health and
• Defining consumers
• Quality improvement
• Consumer
• Leadership
• Co-design
• Peer support
• Your experience
• Roles &
• Meetings
Health and
• Inequities
• Research
• Clinical trials
Health and
• Leadership
• Co-design
• Peer support
Goals for the day
• To understand what it means to be a leader
and provide leadership as a health and
disability consumer representative.
• To have an understanding of co-design and
how you can use it.
• To have an understanding of what peer
support means and how this can work for
‘Leadership is one of the most widely
researched phenomena in the social sciences
with no agreement on a single definition and
has come to mean all things to all people.’
Consumer Leadership: A Literature Review (2007)
‘If leaders want to alter the perception
that they alone have all the answers,
hashed out in some corner office, they
must become a regular, approachable,
and authentic presence throughout the
organization. Discussions in the hallways
talking with staff, and learning from
patients and patient stories, need to
become the norm.’
Gary, Yates, Sacks, Feeley, Kabcenell (2013)
Leadership defined
• A leader is a person with the ability to inspire,
motivate, lead or influence others.
• Leaders stir people’s emotions, raise their
expectations and take them in new directions.
• ‘Leadership is about setting a strategic direction
or vision, concern with changing the status quo,
and energizing of others to act.’
Consumer Leadership: A Literature Review (2007)
Fifteen Personal Qualities Essential for Leadership
(NHS Leadership Qualities Framework, 2006)
1. Setting direction:
• seizing the future
• intellectual flexibility
• broad scanning
• political astuteness
• drive for results.
2. Delivering the service:
• leading change through people
• holding to account
• empowering others
• effective and strategic influencing
• collaborative working.
3. Personal qualities:
• self-belief
• self-awareness
• self-management
• drive for improvement
• personal integrity.
• Consumer leadership in health can be inherent
in many people, and can emerge and be
developed given the right combination of an
enabling environment and appropriate support,
including training.
• Consumer leadership requires support and
mentors from all sectors to guide effective
change and build leadership skills.
Enablers and barriers to consumer leadership
1. Health professionals value the
consumer leader’s knowledge and
1. Health professionals view
participation as seeking information
from consumers vs a partnership to
2. Health professionals work in
partnership with the consumer
2. Communication may not be
3. Developing consumer
participation is a continuous
3. Lack of understanding/resistance
to partnering with consumers.
4. Consumer focused throughout
the organisation.
4. Difficulty locating or recruiting
consumer representatives.
Te Pou consumer leadership
development grant
• Consumer leadership development grants are
available to assist consumer participation in
leadership development.
• Any organisation funded by the disability support
service group of the Ministry of Health can apply,
either on behalf of a consumer or in sponsorship
of others.
(email: [email protected] for an application form or go to:
Group exercise
What are the skills, knowledge and
experience needed to be a
consumer leader?
What is health service co-design?
• Capturing and understanding consumer, family/
whānau and health care providers’ experiences of
the health care system and then working together
to improve them.
• Working together in equal partnership to identify
issues and improvement opportunities.
• Working together on designing and developing real
projects to improve the service.
Co-design principles
Equity: an equal relationship with consumers
throughout the improvement process.
Understanding: engaging with, listening to
and understanding consumer experiences.
Improving: using co-research and design
methods to improve services.
(Bate & Robert 2006)
Six phases of co-design
Co-design practices
Prioritise the consumer experience: Keep the
consumer central and support their contributions
Trust the process: The results of collaboration make
it well worth stepping outside your comfort zone.
Be sustainable: Ensure your project is fully supported
over time.
Be ethical: Address ethics committee requirements
and use informed consent.
(Bate & Robert 2006)
Co-design partnership
The value of having consumers and their
families involved in improvement initiatives
can make service design safer, quality more
effective and satisfaction more reliable.
Adapted from Patient and family advisors:
Getting the most out of your partnership
Useful websites
Online library of quality and service improvement tools:
A 2013 revised and extended free-to-access online EBCD
Information about experience-based design:
Working with patients to improve health care:
Peer support:
What does this mean?
Peer support is a system of giving and
receiving help founded on key principles of
respect, shared responsibility and mutual
agreement of what is, or can be, helpful.
Peer support, supervision, mentoring,
counselling: What’s the difference?
A structural relationship where a practitioner
reflects critically on their work and receives
feedback/guidance from a trained supervisor in
order to provide the best service to consumers.
A developmental partnership where one
person shares knowledge, skills,
information and perspectives to foster
personal and professional growth of the
other. It is a two-way relationship.
A therapeutic relationship where a trained
counsellor gives guidance on personal or
psychological problems using trained
methods and techniques to help people with
their problems. It is not an equal relationship
nor reciprocal.
Cultural supervision
A professional relationship between members
of the same culture to ensure the supervisee
is practising according to the values,
protocols and practices of that particular
culture. It is about accountability and cultural
(Eruera 2005)
Kaupapa Māori supervision
An agreed supervision relationship between
Māori for Māori, to enable the supervisee to
achieve safe and accountable professional
practice, cultural development and self-care
according to the philosophy, principles and
practices from a Māori world view.
(Eruera, 2005)
Peer support embodies:
• reliance on the expertise of shared experience
• recovery in the sense of wellbeing and
• self-care and self-determination
• a life well lived even with the limitations of illhealth
• talking to somebody who understands the
language they use to describe their feelings – the
‘ah-ha’ moment
• using personal experience to help others.
How peer support can work for you
• Helps improve coping skills.
• Gives reassurance and a sense of normalcy.
• Reduces isolation, particularly for those
consumers on their own in a working group.
• Provides opportunities to share information.
• Improves understanding of the experience.
• Gives greater confidence in talking to health
A peer support ‘contract’
• Mutually agreed time to meet and talk – how
• Give feedback on issues discussed.
• Maintain confidentiality.
• Others? Group to include.
• Leadership has many meanings and is particular
to each individual but requires group
participation with a shared vision.
• Co-design is about working together
collaboratively as equal partners to improve the
health care system.
• Peer support is essential for self-care and
self-determination – and a shared experience.
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