About involvement and engagement
This page clarifies some of the key terminology and conventions used throughout the Toolkit
The terminology used in this area can be confusing. 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 representatives 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
- making trials more attractive to potential participants
- analysing research findings
- ensuring a balanced assessment of research findings
- helping design and deliver further involvement/engagement 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:
- sharing research findings
- consumer training on product or protocol development
- research open days
- sharing information through public talks and lectures
- using social media to highlight trials/trial topics
Clinical trials are conducted for many reasons. For example, they may:
- test whether new treatments are better than existing ones,
- test whether existing treatments used for a disease condition are effective in other conditions or patient populations
- compare the existing treatments used for a disease condition to find out which work best.
Participation is where patients or healthy volunteers take part in clinical trials.
Clinical research aims to discover whether proposed new treatments are better than existing ones or alternatively, which of a number of existing treatments commonly used for a disease condition is best.
Some examples of consumer participation include:
- being recruited to take part in a clinical trial
- completing a questionnaire or attending a discussion group as part of a research study
- providing data or tissue that is analysed as part of a research study
Many terms are used to describe those who partner with researchers and research organisations to conduct clinical research. We use the following:
Consumers: Patients and potential patients, carers, and 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 representative: 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/or the community.
** Although the term consumer representative is adopted within the Toolkit, the individuals you work with may prefer an alternative title such as - consumer advocate, patient partner, consumer member.