Involve and engage
Before you begin, you may benefit from engaging with work already undertaken.
This vision statement guides the consumer voice in all that we do.
When we embarked on the development of a VCCC Alliance framework for consumer engagement, the Cancer Australia National Framework for Consumer Involvement in Cancer Control (2011) formed the foundation for our engagement strategy. We considered the Cancer Australia framework to be the best practice guidance to inform our approach and we elected to keep the five tiers of participation from their model, described as:
The Consumer Engagement Toolkit is the result of consultation with consumers and alliance members who identified a need for guiding documents to support effective engagement.
The Toolkit provides real-life examples of consumer engagement and associated resources for all to use. Templates can be downloaded, branded and customised for your own purpose.
The content produced is engaging and dynamic, and by publishing online, we saved some trees! We recommend retaining the information regarding the origin of the document when you download and re-use any of our examples. Our organisations are specifically involved in cancer research, education and clinical care, nonetheless, much of the content in these pages can be adapted more broadly.
Most importantly, consumer engagement is a working relationship. Like any professional association, it is important that everyone understands the other person’s perspective. We encourage you to explore the content and find what is relevant for you.
It is a work in progress and constantly evolving. Significant updates will be advised via the VCCC Alliance E-Link newsletter - subscribe for regular information.
Here, you can learn more from the VCCC Alliance Cancer Consumer Advisory Committee Chair, Ms Sophy Athan, from her presentation at the 2020 Clinical Oncology Society of Australia Annual Scientific Meeting. Sophy speaks about the VCCC development and implementation of a consumer engagement framework for cancer.
In Australia the phrase consumer and community involvement (CCI) is used consistently by governing and funding bodies to refer to people participation. In the UK, US and Canada, the phrase patient and public involvement (PPI) refers to the same thing.
Language is important and not everyone associates with the term ‘consumer’ or ‘patient’. Do not assume that a person will respond to the title ‘consumer’. Be respectful in conversation and ask for the individual’s preference and maintain this language throughout the working relationship. It may seem like a minor difference to some, but for others it can be contentious and this depends entirely on personal choice. Try not to let the terminology overshadow the purpose of what you are trying to achieve.
Definitions are of terms used in the toolkit:
Consumer or health consumers are people who use health services, patients, families, carers and other support people. This includes those who have used a health service in the past or potential users of the service.
Consumer representative is someone who voices consumer perspectives and takes part in the decision-making process on behalf of consumers. This person may be appropriately trained, have experience, undergo training and be supported to advocate for consumers. Alternatively, a consumer representative may be accountable to an organisation or association and represent a certain viewpoint.
Consumer engagement is used to reflect an approach that involves the development of meaningful relationships with a shared focus. This is underpinned by trust and mutual respect, a commitment by all involved and active two-way dialogue. The term consumer engagement indicates action that is more than simply taking part.
Community is a group of people sharing a common interest (e.g. cultural, social, political, health, economic interests) but not necessarily a geographic association. Different types of communities are likely to have different perspectives and approaches to their involvement in research.
Community member is a member of a community.
Health care describes services provided to individuals or communities to promote, maintain, monitor, or restore health. The health care system has multiple components including health promotion, primary health care, specialist services and hospitals.
Public can be used to collectively refer to consumers and community members.
Research is an original investigation undertaken to gain knowledge, understanding and insight.
Research participation refers to people who partake in a research project such as clinical trials, surveys and focus groups. Ethics and individual consent is required before participation starts.