0202312040033

Involve Australia Guidelines for Community Involvement in Genomic Research development and pilot Description: Involve Australia has engaged with the public to develop community involvement guidelines for genomic researchers. The project partnered with patient support and advocacy groups, patients and carers, people who involve community in their research, interested members of the public, genomic researchers and healthcare professionals.

The project investigated the public and community involvement landscape in Australian healthcare research and used existing resources to aid the development of guidelines specifically for genomic research.

Unlike many guidelines, Involve Australia built its guidelines from the community member perspective. This allowed community members to highlight what they need if they are to continue to be involved in research. Ensuring their needs are built into genomic researchers’ involvement strategies before projects begin provides a standard for other fields of healthcare research. Ultimately, this will improve patients’ journeys towards better health.
STARDIT ID: 0202312040033

Dates

State completed
Start 2021-07-01
End 2025-06-30
Form updated 2025-08-06

Location

Australia

URL

australiangenomics.org.au/projects/involve-australia-public-involvement-in-genomic-research/

Aims

To develop a set of community involvement guidelines for genomic researchers, prioritising the voice of community members.

To pilot and evaluate the community involvement guidelines to ensure they are implementable and fit for purpose.

Keywords

health consumer

community member

genomics

guidelines

citizen science

patient involvement

public involvement

consumer involvement

community involvement

research

health research

genomic research

learning

education

impact

researcher

professional development

Category

research

Inputs

organisation

Australian Genomics (link)

Task: coordinated project | provided funding staff

group of individuals

Involve Australia Working Group (8)

Task: Scoping review: • Provided feedback on what types of data should be extracted. • Provided resources for inclusion in review. • Undertook data extraction for cross-checking purposes. • Several working group members will review | Health perceptions survey: • Provided feedback on survey questions and data to be collected. • Testing survey. • Assisted with survey data analysis (quantitative and qualitative). • Assisted with recruitment by emailing survey invitations to their networks. | Key informant interviews: • Provided feedback on interview questions. • Assisted with recruitment by emailing interview invitations to their networks. | Working group discussions and meetings: • Members attended monthly formal working group meetings via videoconferencing • Informed of project updates • Provided feedback on key documents and outputs of the project.

Other tasks: • Working group members co-presented to researcher network meetings
Method: Monthly formal working group meetings with project updates and time for discussion and feedback on key documents.
Communication: Online synchronous meetings (video/tele conference) | Online shared documents | Online asynchronous discussion | Tracked changes and comments in static documents
Compensation: honourarium
Impact: Original timeline stated that we would develop, evaluate and pilot the guidelines within the three-year grant. Involving community members lengthened this process, however it ensured there was a rigorous public consultation process to ensure the guidelines being developed were as useful to stakeholders as possible | Additional community member review of the community involvement guidelines allowed us to ensure that the community voice can still be heard throughout the document | Development of a remuneration policy, which we didn’t originally plan to do. After discussions with the working group and research into the scoping review, it was noted how important offering payment to community members is. A policy was developed and made available online for us by Australian Genomics and Australian Genomics-supported projects.

individual

Monica Ferrie

Task: Project lead, member of working group
Compensation: paid

individual

Sean Murray

Task: Project lead
Compensation: paid

individual

Anne McKenzie

Task: Project lead
Compensation: paid

individual

Tiffany Boughtwood