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

Experience base

• 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

• 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

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/

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

Roles and responsibilities

Consumer representation

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.

• 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

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

Types of consumer representative involvement

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.

• 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

Enablers and barriersEnablers• 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

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

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

• 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

• 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

• 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

• 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

Questions?

Comments?

Evaluation