Consumers should feel valued and part of the organisation.
Their involvement ensures a measurable increase in knowledge and skill, enhances problem-solving, introduces new ways of looking at and doing things; and ultimately gives organisations greater adaptability in a changing environment.
There are some fundamental aspects to building a relationship with a consumer to enable them to be an effective member of your research team or project.
Download the top ten tips to share with early career researchers and to remind your project team some important starting points when creating consumer relationships.
An introduction pack is one way to start the engagement. A standard pack could include an introduction letter with relevant links, contact details of key people and an overview of the organisation or project. Other components may be added such as forms to manage aspects of organisational integrity and duty of care in case of an emergency.
Levels of involvement
Most organisations will have levels of involvement where consumers can contribute. The VCCC Model of Consumer Engagement outlines how engagement can be integrated into a program or project. It is worth investing time and resources into recruiting, matching and inducting consumers to specific projects. On commencement, they should be provided a clear outline of roles and responsibilities.
The more specific the detail you provide during recruitment increases your chances of finding consumer/s with the appropriate experience, skills and abilities to match your project.
The Request for Consumer Participation Form is purposefully designed to guide you through the elements of best practice engagement and assist you to think about and articulate a clear request.
Details for a specific project can be contained in an expression of interest form.
The example provided is from the Walter and Eliza Hall Institute; it enables consumers to respond to questions about disease experience, availability, previous training and involvement.
A role description helps to set the expectation of the role and the responsibilities of all involved in the working relationship.
Consumers can play an important role in assisting researchers, clinicians and educators to better understand the lived-experience of cancer.
From being involved in research to guiding decision-making, consumer perspectives provide a unique source of knowledge.
The Chair of a committee or working group plays a critical role in enabling effective consumer engagement.
This applies to the Chair’s commitment to the leadership they model through their own practice in engaging with consumer representatives, and through enabling a consumer voice and contribution within the actual meeting context.
Committee members share responsibility for the advocacy, leadership, evaluation and continuous improvement of consumer engagement practice.
Incumbents in this role may also choose to take on other consumer engagement roles as consumer representatives, consumer panel members or as members of the consumer network. This role description is specific to the consumer committee role.
Project managers play a critical role in supporting and enabling meaningful consumer engagement in projects.
This relates both to individual practice as well as how consumers are supported and feel safe in their contribution and leadership.
The responsibility for consumer engagement should sit at the most senior level of an organisation to be truly effective. This demonstrates an intent to support authentic collaboration. Ideally a designated role should be allocated to assist in supporting and enabling engagement practices.
The VCCC has a Cancer Consumer Advisory Committee, headed by an independent Chair, which reports into the Board - and is part of the VCCC distributed leadership team. The Consumer Engagement Manager role sits in the VCCC Strategic Initiatives and Quality team.
Financial acknowledgement for consumer representation is accepted as best practice and many health consumer organisations across Australia recommend remuneration for any meaningful contribution.
Standard practice is to cover all out-of-pocket expenses. Sitting fees for committee membership or hourly rate remuneration can be offered dependent on level of engagement.