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.
STARDIT ID:
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 ongoing
Start 2021-07-01
End 2025-12-31
Form updated 2024-11-29
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
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.
funding
Project funding
NHMRC GNT2000001, Australian Genomics Grant Program
time
3 years
Involve Australia Project Coordinator
time
3 years
Involve Australia Project Officer
funding
AUD $6000
Consumer payment (mid-2022 to 2023)
time
3 hours per quarter hours
Administrative tasks associated with consumer payments
Outputs and impacts
publication/report/document
State: Completed
Community Involvement Guidelines for Genomic Researchers
Impact: Guidelines will be piloted and evaluated 2024-2025.
This is a set of 17 recommendations divided into five overarching domains that describe key elements of good community involvement practice.
publication/report/document
State: Completed
Australian Genomics Consumer Honoraria and Reimbursement Policy
Impact: This policy is being used across several Australian Genomics priority projects and being used/adapted by partner projects.
This was developed to ensure Australian Genomics and its supported projects are provided with the appropriate guidance for community member payment.
publication/report/document
State: Completed
Stage: End of project - December 2023
Guidelines for Community Involvement in Genomic Research (link)
Stage: End of project - December 2023
Impact: Guidelines endorsed by multiple organisations
publication/report/document
State: Completed
Stage: End of project - December 2023
Guiding Questions for Researchers (link)
Stage: End of project - December 2023
A supporting document for the Guidelines for Community Involvement in Genomic Research
other
State: Completed
Stage: Mid-project
Response to feedback (link)
Stage: Mid-project
Impact: Feedback from the draft guidelines affected the final version of guidelines by making them more readable, useable and intuitive
Response to feedback for Involve Australia’s 'Guidelines for Community Involvement in Genomic Research'
publication/report/document
State: Ongoing
Start: 2023-01-04
A scoping review of community involvement in genomics research and current Australian guidelines
Start: 2023-01-04
knowledge translation
State: Prospective
Presentation at the Australian National Human Research Ethics Committees conference 2024
Focus on the ethics of public and community involvement in genomics research
publication/report/document
State: Prospective
Peer-reviewed article about development and evaluation
publication/report/document
State: Prospective
Peer-reviewed article about survey process and results
knowledge translation
State: Completed
Presentation at the 2024 Human Genetics Society of Australasia about the project
knowledge translation
State: Completed
Presentation at the 9th World RETT Syndrome Congress 2024 about the project
publication/report/document
State: Completed
Peer reviewed article about public perspectives on community involvement in health-related research activities (link)
Impact: informed the development of guidelines for genomic researchers to improve involvement
This research aimed to understand public perspectives on community involvement in health-related research activities, and to inform the development of guidelines for genomic researchers to improve this involvement.