Organisations need to be clear [about] what they want from a consumer and spell out exactly what the consumer’s role is. There has to be a complete alignment between what is expected and what can be delivered.
—David Sandoe, consumer, Chair Prostate Cancer Foundation of Australia
The Framework provides examples of activities for involving consumers. A significant part of consumer engagement is understanding and being explicit about the role consumers are expected to fulfil.
Evidence suggests that the higher the level of consumer involvement (from informing through to community-led) the greater the impact on health outcomes; this is a clear incentive for organisations committed to making a difference.
Examples of consumer involvement:
- service planning
- improving patient care throughout the cancer pathway
- education and information
- service measurement and evaluation
- participation in the research cycle
- policy planning and development
- priority setting.
All levels of consumer engagement are essential for effective consumer involvement – from building health literacy and community awareness through to incorporating consumer input into organisational strategic planning and priority setting. Engaging at every level will depend not only on the consumer’s knowledge, skills and experience, but the organisation’s capacity to resource, train, support and engage them.
What can consumers expect from organisations?
Consumers participating in your organisation can expect to be considered part of the team, to have their views listened to and taken into account. They will be respected for the knowledge, skills and experience they bring to the table. Consumers will be involved in your organisational board and working groups, and your policies and systems will support both consumers and your staff in effective consumer engagement.
As any other member of the team would be fully informed, consumers also will be kept up-to-date about any relevant practical information regarding meetings or changes (time, date and location) and can expect to receive reasonable lead-time on any pre-reading.
Consumers can also expect to have a support person or mentor from within the organisation available for briefings before and after meetings, as necessary. Here is a list of some examples to guide your consumer implementation plan.
What about leadership?
Engaging consumers within the organisation requires leadership and some administrative work and management of a system which will make it easier for you and consumers to participate effectively. Think about the best person in your organisation to facilitate, and allocate resources accordingly.
At what stage of the pathway should I be involving consumers?
Consumers may be involved at every stage of the cancer pathway, including: prevention, screening, early diagnosis, treatment, supportive care, survival and palliative care, research, policy, planning and service development. Determining consumer readiness for involvement is an important issue regardless of where the consumer is along the cancer pathway. Several consumer self-assessment resources may prove particularly helpful:
What are the types of consumer roles?
I’d like to see more of a critical mass for consumer paticipation, so organisations don’t keep relying on all the same people. When I first became involved, it was a new concept to involve consumers. Nowadays it’s more common. But I think people think they just have to snap their fingers and they’ll have consumers. Instead it’s important to take the time to find the right consumers for the right roles.
—Nicola Bruce, consumer researcher
The Framework summarises consumer roles into five key types. As consumers develop their engagement capability they are called upon to advocate for others and provide advice. The highest levels of consumer involvement include consumer-led, partnering or co-design. Building consumer capability that will lead to achieving long term change is dependent on organisational capacity and support.
There are five main types of consumer involvement:
- Personal engagement
Click on a type for more information
For consumer involvement to succeed each of the roles are required. The important issue is to recognise which approach is best suited to your purpose. Whether this is involving consumers in improving their own health literacy, giving feedback on printed material or working in small project groups, then you will probably be looking primarily at personal engagement, advocates and advisors.
If you are keen to place consumers on high-level committees or involve them in strategic planning, then you are going to need to begin recruiting consumers who have skills that allow them to participate as experts and partners.
Case studies of consumer involvement
Hear from experienced health professionals on approaches they have taken to engage consumers effectively.
What knowledge, skills and experience do consumers need?
The answer to this question will depend on the purpose of the organisation or activity and the roles expected of consumers. The following tools will assist in matching consumer skills to organisational goals.
- Consumer knowledge, skills and experience (for organisations)
- Consumer knowledge, skills and experience (for consumers)
Additional tools that may also be helpful.
- Capable consumer checklist
- Consumer storytelling for health services
- Tips for consumers working on committees
Consumer recruitment and support
There are many approaches to selecting consumers to participate in activities. These include:
- A request to consumer organisations for a nomination
- Advertising and recruiting consumers based on selection criteria for a specific project or purpose
- Selecting consumers through clinical, policy or research networks.
Tools for engaging consumers
Once you know what type of consumer involvement roles you need, then orientating and training consumers in the goals of your organisation and the contribution consumers will make will sustain your approach. Below are some tools and resources to support your training needs.
Below are some practical tools for recruitment, selection and support of consumers:
- position description for a community advisory member
- position description for a community representative
- consumer orientation workshop
- principles of training
- consumer recruitment process guide
- consumer interview template
- reimbursement protocol
Once you have your consumers, think about these three key pillars of success:
Supporting consumers to be involved in your activity will enable a broader range of consumer participation. Enabling consumers to fulfil their role effectively will be met by providing out of pocket expenses, accommodation and travel and sitting fees as appropriate.
For networking and mentoring, organise an annual networking meeting for all consumers involved in your organisation or enable your consumers to meet with consumers from other organisations.
Alternatively, consumers and networks can learn from each other, and benefit from a mentoring program where they are supported by experienced consumers.
A further benefit for your consumers will come from attending workshops and conferences, including presenting their work.
Tools for engaging consumers at the broader levels of participation:
You may choose to engage consumers in your organisation’s activities through inviting consumer feedback about service provision or organisational planning, or by running a one-off consultation about a specific issue or project. Informing and consulting based involvement is considered to be on the broader levels of engagement. It is expected, though, that through these consultation methods you will begin establishing relationships with your consumers who will, over time, move to greater levels of engagement.
There are many methods of consultation. Some of the most commonly used are:
- focus groups: Conducting focus groups