Embedding Consumer Engagement

Co-Design and person-centred care involve health professionals shifting their thinking to actively engage with carers and consumers. But why is it so important to make this shift? Why engage carers and consumers in the process of refining and developing health services?

embedding By listening to the stories of consumers and carers, health professionals can deepen their understanding of their clients’ needs and work to improve their experience in meaningful ways.

“Sometimes what I’m talking about is just my real life. I’ve had doctors say to me ‘Wow that was amazing what you just said’, but I don’t even recall what it was. To me it’s just common sense; it’s not rocket science. For that [insight] to be acknowledged by professionals is quite rewarding, you feel like you’re telling them something really basic and yet they treat it like amazing information.” – Anne Funke, Carer’s Advocate

To ensure that consumers’ voices are heard it is important that clear structures are put in place to formalise this process. This makes a strong statement about the value placed on consumers’ involvement in decision-making and ensures consumer input is cemented into the development and delivery of health services in consistent and sustainable ways.

Boards and Management Teams

The management of a health service is often the responsibility of a board or team of senior staff members. This team considers all aspects of the running and operation of the service and strategic planning about the service’s future for development and expansion.

Involving consumers or carers at board level can be a way of ensuring that the interests of the service’s clients are properly represented throughout all planning and review processes. This is also a requirement of the National Safety and Quality Health Service Standards, standard #2: Partnering with Consumers.

Consumers or carers involved on boards or management committees are active participants who have an equal say in decision-making processes.

An individual who has had experience of receiving care or advice from the service may be invited to join the board, or to act as consultant/s to the management team. A representative from a consumer support group may be appointed to serve on the board and act as a conduit between the group members and the health service.

Where a health service is working in active partnership with a consumer support group a reciprocal or complementary arrangement may be appropriate, so that a health professional is involved as a consultant or adviser to the support group committee. This has obvious benefits for both parties, as they both remain continuously up-to-date with each other’s interests and concerns.

Working Parties and Service Development Committees

Working parties or service development committees may be formed to provide advice to a health service on an ongoing basis, or may be formed as necessary to manage a specific review or project. Consumers and health professionals work side-by-side to provide a practical structure for review of consumer feedback (e.g. from surveys or focus groups).

With a clear objective, the committee can draw on their collective pool of expertise to identify priorities, issues of concern, strategies for development and issues affecting their implementation.

Consumer Advocates

In some instances it may be particularly valuable and worthwhile for a health service to consider employing a consumer or carer advocate as a member of staff.
Involving an advocate in the day-to-day delivery of services to clients ensures that the client perspective is always kept clearly in mind, and that there is someone for the clinicians to consult with to ensure the clients’ perspective has been properly taken into account.

Consumer advocates can also make a significant contribution by bringing service failures or areas for improvement to the attention of health service staff and management. Practical considerations that may be obvious to a consumer advocate (how difficult it is to organise reliable transport, for example) may not be obvious to other staff members and may reinforce the need for flexibility or require the provision of additional support to families.

A vital part of any consumer or carer advocate’s role is providing active support and encouragement to families as they interact and work with the service’s health professionals. This may mean joining them in clinic consultations to ensure they are given every opportunity to communicate their needs. It may mean helping them to complete questionnaires and forms, offering ongoing help and support, directing them to resources or facilitating connections to other support networks (e.g. consumer support groups).

Building Capacity

Health services have an important role to play in building capacity among carers and consumers, in educating and supporting them to advocate for their needs and to take on larger roles, e.g. in committees or consumer support groups.

Health professionals who are accustomed to working in active partnership with consumers and carers are usually open to learning from them. Professionals can play a role in building consumers’ confidence to become educators themselves (e.g. through invitations to present at medical seminars or conferences). Such invitations from professionals result in invaluable opportunities to gain a depth of knowledge of the lived experience of their clients, leading to better standards of care and consumer satisfaction.

Enabling Active Participation

The experience of working together in partnership may feel unfamiliar for both health professionals and consumers and carers. To give this process every chance of success, consumers should be provided with whatever support is necessary to ensure they can participate equally and fully. It’s important to value and acknowledge the consumer’s input to ensure their opinions are valued and respected.

Support may include ensuring that:

The foundation principles of Co-Design are explained and understood.
Clear, consistent processes, procedures and accountabilities are in place, understood and respected by all.
Training and professional development is provided to consumers, as necessary, to increase and build their capacity to participate to their utmost potential.
Information is circulated as far in advance of meetings as possible to allow full participation (consumers and carers often have considerable demands on their time).
Reports and other documentation are presented in easily understood and jargon-free language.
Consumers’ participation is properly resourced – financial compensation may be necessary to enable consumers or carers to participate on boards or committees (e.g. to cover the costs of transport, parking and after-hours child care).

Australian Commission on Safety and Quality in Health Care. Safety and Quality Improvement Guide Standard 2: Partnering with Consumers (October 2012). Sydney.