About involvement and engagement
This page clarifies some of the key terminology and conventions used throughout the Toolkit
We have adopted the definitions below to describe the three distinct ways that researchers and research organisations interact with consumers and the community.
Involvement is where consumers and community members actively work with researchers and research organisations to help shape decisions about health research priorities, policy and practice.
Some examples of consumer involvement include:
- defining research questions
- identifying outcomes of interest
- helping design and deliver the research projects
- improving the content and readability of participant information
- identifying ways to make trials more inclusive and less burdensome
- co-designing and sharing information about trials to assist with recruitment and dissemination of results
- assisting in data collection and publication
- analysing research findings
- developing plain language resources (e.g. protocol summaries, research communications/progress updates and result summaries)
- co-designing translation and implementation strategies/activities.
Engagement is where information and knowledge about research is shared with consumers and the community so that they are better informed on why, how, where, and by whom research is conducted.
Engagement is about creating a dialogue with consumers and the community to improve research literacy and increase trial awareness to encourage trial participation as a routine care option.
Some examples of consumer engagement include:
- information-sharing in webinars, events, public gatherings, social media platforms, and similar channels
- dissemination of printed educational materials
- research open days
- focus groups and surveys
- communication tools such as newsletters, blogs, articles, other publications and podcasts
- presenting at conferences.
Participation is where patients or healthy volunteers consent to take part in clinical trials.
Some examples of consumer participation include:
- consenting to take part in a clinical trial and completing all trial related visits and requirements
- completing surveys, interviews, or focus groups for a research project
- providing blood, other tissue, or data to a research study
Many terms are used to describe people in the community with lived health experiences or those advocating for and representing them. Within this toolkit the following terminology is used, in alignment with the 2016 National Health and Medical Research Council (NHMRC) and Consumers Health Forum of Australia (CHF)’s ‘Statement on community and consumer involvement in health and medical research’. However, it is best practice for researchers to ask those they are partnering with how they would prefer to be referred to (e.g., lived experience expert, patient representative, patient advocate, consumer partner, citizen scientist, etc.).
Consumers: Patients and potential patients, carers, and other people who use health care services.
Community: A group of people sharing a common interest (e.g. cultural, social, political, health, economic interests), but not necessarily a particular geographic association. Different types of communities are likely to have different perspectives and approaches to their involvement in research.
Consumer member: Someone who voices consumer perspectives on behalf of consumers.
Note:
* For brevity, the term consumer is often used within the Toolkit to mean both consumers and the community.
** Although the term consumer member is adopted within the Toolkit, the individuals you work with may prefer an alternative title, such as consumer advocate or patient partner. The best way to determine this is to ask them.