About consumer involvement in cancer care


Consumer involvement in all aspects of cancer control is crucial to creating positive outcomes for organisations and consumers. Consumers can become involved in:

  • cancer care, including the patient journey
  • research, including clinical trials
  • service delivery
  • policy-making.

For practical information about the implementation of the framework, see Getting started.

Why involve consumers

Involving consumers brings benefits to your organisation, such as:

  • a better understanding of your consumers
  • better consumer understanding of your organisation
  • better patient experience
  • better quality and safety through patient-centred care
  • more informed consumers and communities
  • evidence and best practice that is influenced by consumer needs
  • better accountability and transparency.

Involving consumers also benefits consumers themselves because it results in:

  • health services that are more responsive to their needs and issues
  • improved quality and safety in a service
  • patient empowerment, which brings improved health outcomes
  • peer support and connection among consumers
  • skills, knowledge and satisfaction, because they are helping to make a positive change.

Involving consumers is an essential requirement of accreditation and reporting at the state and national levels, and is included in the National Safety and Quality Health Service (NSQHS) Standards (Partnering with Consumers Standard). Consumer involvement in their own health care is also a part of the Australian Charter of Healthcare Rights.

Framework elements

The framework identifies 4 key elements that are essential for effective consumer involvement – committed organisations, capable consumers, inclusive groups and a shared focus.

Committed organisations

Committed organisations are those that:

  • show their commitment to meaningful consumer engagement by integrating consumer involvement in all aspects of organisational practice, processes and systems
  • have a governance structure that incorporates principles, values and elements of consumer participation
  • actively respect people’s cultural needs, and target culturally diverse communities whose outcomes are poorer
  • have terms of reference, policies and procedures that outline clear objectives of consumer involvement
  • have the appropriate resources and support consumers to be effectively engaged
  • train consumers and provide them with development opportunities
  • train staff to strengthen their understanding of the benefits of consumer involvement
  • facilitate and coordinate consumer involvement activities, including consumer feedback and participation in organisational strategies
  • research and evaluate consumer involvement activities for quality improvement and benchmarking.

Capable consumers

Capable consumers are trained and prepared to look beyond their personal experience and provide a broad consumer perspective. They can also effectively represent the views of those unable to represent themselves or those with poor outcomes.

Capable consumers:

  • have an experience of cancer either as a patient, carer, family member or survivor
  • are motivated to participate in a largely voluntary role to improve outcomes for others
  • can develop their skills and capabilities to meet the requirements of the role
  • can understand of the health context where they are involved, and the different levels of consumer involvement
  • undertake learning and development opportunities, including conference and forum attendance and co-authoring journal articles, to build their expertise in consumer participation
  • seek support through connections with consumer organisations, networks and support groups
  • encourage and support other consumers to actively participate and develop in the role of consumer representative.

Inclusive groups

Inclusive groups understand the value of each member and the contribution each member makes. Inclusive groups are led by champions who value the voice and expertise of the consumer experience. To achieve success, all members of the team are respected and engaged equally, and work together to achieve the same goals.

Organisation leaders can help by promoting the benefits of consumer engagement and by involving consumers as respected, equal members of the team. This will encourage well-developed, mature and effective groups.

Inclusive groups have:

  • leaders within the organisation who promote the benefits of consumer involvement
  • mutual respect, so that consumers are respected and valued for their contribution. Their views are actively sought, listened to and considered
  • equality between consumers and the rest of the team
  • opportunities for professionals and consumers to undertake professional development, and opportunities to work together to learn from each other’s knowledge and experience
  • a way to communicate that that builds knowledge, understanding and mutual respect.

Shared focus

This element draws all elements together to focus on outcomes. A shared focus element means that consumers are active participants, actively supported by organisational systems and processes, working as members of a team to achieve objectives.

To have a shared focus, consumers may:

  • work with professionals to develop accessible information and support for people affected by cancer
  • team with health professionals to ensure the delivery of safe and high-quality cancer services based on best practice
  • be involved in the design, conduct, translation and evaluation of research
  • participate in policy development to improve cancer outcomes
  • develop performance measures with professionals, to help determine the effectiveness of consumer involvement and facilitate benchmarking opportunities for quality improvement.