A Pathway to Precision Medicine for Aboriginal Australians: A Study Protocol
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Task: Project design, ethics applications, planning and delivering co-design processes analysing data from co-design activities
Method: formal investigator team, Project Advisory Committee, formal meetings, email discussions, commenting and editing documents, teleconferences, face to face meetings (when required)
Recruitment: invitation by Poche Centre staff and Aboriginal community representatives
Communication: face to face meetings, online meetings, emails, shared online documents
Barriers: Geographic isolation and COVID restrictions will make face to face meetings difficult
Compensation: other(Academic investigators were a mixture of paid and volunteer)
Impact: changes to the study design, research protocol and research plan
Task: Project design, ethics applications, planning and delivering co-design processes analysing data from co-design activities
Method: formal investigator team, Project Advisory Committee, formal meetings, email discussions, commenting and editing documents, teleconferences, face to face meetings (when required)
Recruitment: invitation by Poche Centre staff and Aboriginal community representatives
Communication: face to face meetings, online meetings, emails, shared online documents
Barriers: Geographic isolation and COVID restrictions will make face to face meetings difficult.
Compensation: volunteer
Impact: changes to the study design, research protocol and research plan, including changes to sampling protocol and data analysis protocol
Task: participate in face to face and online events, consultation processes, feedback on protocol, checking learning resources, completing survey about planned research
Method: Face to face and online events, co-design workshops and other activities to involve people
Recruitment: invitation, word of mouth, adverts in shop windows, adverts in local newspaper, social media
Communication: face to face meetings, online meetings, emails, shared online documents
Barriers: Geographic isolation and COVID restrictions will make face to face meetings difficult.
Compensation: volunteer
Impact: changes to the study design, research protocol and research plan, including changes to sampling protocol and data analysis protocol
Alex Brown is supported by the NHMRC Fellowship (GNT1137563) and The Hospital Research Foundation (SA)
Kylie Gwynne is supported by Australian Genomics for work associated with Mackenzie’s mission
Australian Genomics is supported by the NHMRC (GNT1113531, GNT2000001) and the Australian Government’s Medical Research Futures Fund
The current protocol has not received any external funding. Stated above are fundings for individual investigators for related work
A number of academic investigators volunteered their time coc-reating this protocol, this an estimate of that time
Aboriginal community representatives and community members volunteered their time to support the co-creation of this protocol, this is an estimate
This study protocol represents a crucial first step to ensure that PM research is relevant and acceptable to Aboriginal Australians.
Description: STARDIT report about study protocol 'A Pathway to Precision Medicine for Aboriginal Australians
Background: Genomic precision medicine (PM) utilises people’s genomic data to inform the delivery of preventive and therapeutic health care. PM has not been well-established for use with people of Aboriginal and Torres Strait Islander ancestry due to the paucity of genomic data from these communities. We report the development of a new protocol using co-design methods to enhance the potential use of PM for Aboriginal Australians. (2) Methods: This iterative qualitative study consists of five main phases. Phase-I will ensure appropriate governance of the project and establishment of a Project Advisory Committee. Following an initial consultation with the Aboriginal community, Phase-II will invite community members to participate in co-design workshops. In Phase-III, the Chief Investigators will participate in co-design workshops and document generated ideas. The notes shall be analysed thematically in Phase-IV with Aboriginal community representatives, and the summary will be disseminated to the communities. In Phase-V, we will evaluate the co-design process and adapt our protocol for the use in partnership with other communities. (3) Discussion: This study protocol represents a crucial first step to ensure that PM research is relevant and acceptable to Aboriginal Australians. Without fair access to PM, the gap in health outcome between Aboriginal and non-Aboriginal Australians wil
Dates
State ongoing
Start 2019-01-02
Form updated 2021-11-15
Report authors
Location
New South Wales, Australia
Other IDs
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Aims
The development of a new protocol using co-design methods to enhance the potential use of Precision Medicine for Aboriginal Australians.
improving research and service design
health services designed for and with Aboriginal people
develop Aboriginal health workforce development strategies to deliver health care in a culturally safe manner.
closing the health gap for Aboriginal Australians
Keywords
co-design
precision medicine
personalised medicine
Aboriginal health
participatory research
genomics
Aboriginal and Torres Strait Islanders
Australian
Category
research
Inputs
group of individuals
Stage: initial co-design stage, pre protocol publication
Start: 2019-01-02
End 2021-05-22
Academic investigators (10) (link)
Start: 2019-01-02
End 2021-05-22
Task: Project design, ethics applications, planning and delivering co-design processes analysing data from co-design activities
Method: formal investigator team, Project Advisory Committee, formal meetings, email discussions, commenting and editing documents, teleconferences, face to face meetings (when required)
Recruitment: invitation by Poche Centre staff and Aboriginal community representatives
Communication: face to face meetings, online meetings, emails, shared online documents
Barriers: Geographic isolation and COVID restrictions will make face to face meetings difficult
Compensation: other(Academic investigators were a mixture of paid and volunteer)
Impact: changes to the study design, research protocol and research plan
group of individuals
Start: 2019-01-02
End 2021-05-22
Aboriginal community representatives (5) (link)
End 2021-05-22
Task: Project design, ethics applications, planning and delivering co-design processes analysing data from co-design activities
Method: formal investigator team, Project Advisory Committee, formal meetings, email discussions, commenting and editing documents, teleconferences, face to face meetings (when required)
Recruitment: invitation by Poche Centre staff and Aboriginal community representatives
Communication: face to face meetings, online meetings, emails, shared online documents
Barriers: Geographic isolation and COVID restrictions will make face to face meetings difficult.
Compensation: volunteer
Impact: changes to the study design, research protocol and research plan, including changes to sampling protocol and data analysis protocol
group of individuals
Start: 2019-01-02
End 2021-05-22
Aboriginal community members involved in co-design and consultation activities (20) (link)
End 2021-05-22
Task: participate in face to face and online events, consultation processes, feedback on protocol, checking learning resources, completing survey about planned research
Method: Face to face and online events, co-design workshops and other activities to involve people
Recruitment: invitation, word of mouth, adverts in shop windows, adverts in local newspaper, social media
Communication: face to face meetings, online meetings, emails, shared online documents
Barriers: Geographic isolation and COVID restrictions will make face to face meetings difficult.
Compensation: volunteer
Impact: changes to the study design, research protocol and research plan, including changes to sampling protocol and data analysis protocol
funding
Funding
Alex Brown is supported by the NHMRC Fellowship (GNT1137563) and The Hospital Research Foundation (SA)
funding
Funding
Kylie Gwynne is supported by Australian Genomics for work associated with Mackenzie’s mission
funding
Funding
Australian Genomics is supported by the NHMRC (GNT1113531, GNT2000001) and the Australian Government’s Medical Research Futures Fund
other resources
The current protocol has not received any external funding. Stated above are fundings for individual investigators for related work
time
70 volunteer hours of academic investigator time hours
A number of academic investigators volunteered their time coc-reating this protocol, this an estimate of that time
time
70 hours hours
Aboriginal community representatives and community members volunteered their time to support the co-creation of this protocol, this is an estimate
Outputs and impacts
publication/report/document
"A Pathway to Precision Medicine for Aboriginal Australians: A Study Protocol" (link)
Impact: published protocol
This study protocol represents a crucial first step to ensure that PM research is relevant and acceptable to Aboriginal Australians.