This page describes methods to find and recruit consumers to involve in your research
Once you’ve decided how you want to involve consumers in your research, it’s time to find them. The content and format of your advertisement should all be tailored to your target audience. You should establish clear criteria before setting out to find consumers, and consider what support and training should be offered to those you plan to involve.
If you are a researcher, you should also contact your network or organisation directly as they may already have a pre-existing consumer advisory panel or patient-group. A consultation by Sydney Health Partners gathering consumer views on how to link consumer with researchers, suggested that more organisations could develop local consumer registers to be approached for involvement opportunities.
Some websites match consumers who would like to be involved with researchers and organisation with involvement opportunities (e.g. the Consumer and Community Health Research Network). You could also find out if there is an existing local or national consumer group related to your disease area or research topic. For rare conditions you may need a more far reaching approach by contacting a national or international support organisation. Rare Voices Australia keep a list of rare disease patient organisations.
Some consumer organisations may have established a research involvement network, which allows them to share important information and opportunities for involvement with those who have expressed an interest.
Clinician researchers are often able to take the direct approach by inviting patients from their clinics or with permission, displaying posters in point-of-care locations.
Local GPs may also be receptive to displaying posters in waiting rooms on your behalf.
It may be particularly challenging to find consumers to involve in research that explores sensitive and stigmatised issues. To be successful, you first need to determine how these groups like to be communicated with (e.g. through a network leader). You will also need to determine the most appropriate method (e.g. social media).
Involving People who are Hard to Reach
In the United States, the Patient-Centered Outcomes Research Institute (PCORI) provide guidance on engaging hard to reach populations and the PCORI Literature Explorer provides access to useful insights into how others have worked with hard to reach communities. You could work with an existing organisation or peer support group, relevant to the condition that you are researching, which may be a good approach when the people you are looking for may be difficult to recruit.
The Recruitment Process
Recruitment for one-off interviews or focus groups may be quite an informal process. It often starts with an advert directing consumers to a contact number so that you can provide respondents with a role profile. Recruitment may then simply be conducted over the phone. However, if you wish to have some control in selecting your consumers to ensure as diverse a group as possible, you may wish to use an expression of interest form to complete this process.
More formal groups will require a more formal selection process. This usually involves a process similar to a job application - such as an advert with a role description, an application form, a shortlist and selection through an interview process. Many useful templates can be found and adapted from the ANZCHOG/PICs Toolkit for Participation and Engagement.
- Consumer and Community Participation Fact Sheet P04: Identifying Appropriate Consumer and Community Members
- Guidance on the use of social media to actively involve people in research (INVOLVE)
- Case study for involvement: Process of seeking community input into grant applications
- Sydney Health Partners: Engaging Consumers in Health Research: Report of Initial Consultations (2017)