La Trobe University - Lived Experience Diabetes Reference Group

Description: STARDIT report about study protocol 'Establishment of a research ready Consumer Reference Group. (1) Background: Type 2 diabetes (T2D) has been understood as a progressive, nonreversible condition. However, recent research has shown that it is possible for people with T2D to achieve a glycosylated haemoglobin A1c (HbA1c) of under 6.5% and sustain this level for at least three months, without the need for medication, which reflects the concept of “T2D remission’. Low carbohydrate diet (LCD) restricts the intake of carbohydrates to 5-10% of total calories and when compared to control diets, can lead to almost two-fold higher rates of T2D remission at 6 months. This is of importance since the current guidelines for General Practitioners (GPs) provide only general dietary recommendations for people with T2D. The above combined with the absence of initiatives that empower people with T2D actively engage in research that concerns them, led to the conceptualization of the proposed project. (2) Methods: This research project consists of four main phases. Phase-I will ensure appropriate governance of the project and establishment of an Interim Reference Group (IRG). Following an initial consultation with key stakeholders from Diabetes Australia, the Defeat Diabetes Program and Eastern Health Phase-II will invite community members with T2D to participate in a training workshop

Dates

State prospective
Start 2023-11-01
Form updated 2024-10-02

Report authors

Katerina Sarapis
0000-0002-3397-8588
Main report author

Jack Nunn
0000-0003-0316-3254
Supported with report writing

Yingting Cao
Supported with report writing

George Moschonis
Supported with report writing

Location

Australia

Aims

1. To identify people with lived experience in Type 2 Diabetes (T2D) (referred as “consumers”) and establish a research-ready “Consumer Reference Group” (CRG).

2. To empower consumers to actively engage in research that concerns them (i.e., train the CRG members on the research process and the co-design of consumer-led and other participatory research projects).

3. To understand consumer’s unmet needs as a means to increase their self-efficacy in the management of their health condition (i.e., T2D).

4. To explore consumers’ views and perceptions on barriers and facilitators of technology-enabled, low in carbohydrate diet interventions for tackling T2D.

Keywords

diabetes, co-design, personalised nutrition, participatory research

Category

research

Inputs

group of individuals

Academic Investigators (6)

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Task: Project design, ethics applications, planning and delivering co-design processes, analysing data from co-design activities, manuscript preparation.
Method: Formal investigator team, formal meetings and email discussions, commenting and editing documents.
Communication: Teleconferences, face-to-face meetings, emails, shared online documents.
Compensation: volunteer

organisation

Diabetes Australia, Defeat Diabetes and Eastern Health

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Task: Bridging between the consumers and academic investigators, contribute to all relevant activities, including consumer recruitment and key contact points for both consumers and the academic investigator team.
Method: Project Advocate Committee, formal meetings, email discussions, shared online documents.
Communication: Teleconferences, email discussions, shared online documents.
Compensation: volunteer

group of individuals

Lived Experience Diabetes Reference Group representatives and members (10)

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Task: Involved in the co-design of a consumer-led research project (i.e., review/provide feedback on project concepts, protocols, ethics applications preparation etc).
Method: Face-to-face and online events, training workshops, focus groups and other activities to involve people.
Recruitment: Invitation by partner Organisations (Diabetes Australia, Defeat Diabetes and Eastern Health)
Communication: Face-to-face, online meetings, emails, shared online documents.
Barriers: Availability/capacity will make involvement difficult.
Compensation: gift
Impact: Co-design and evaluation of the research protocol and research plan.

time

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A number of academic investigators volunteered their time co-creating this protocol. hours

time

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Key stakeholders and consumer representatives from Diabetes Australia, the Defeat Diabetes Program and Eastern Health volunteered their time in recruiting study participants/consumers and in other activities related to the project. hours

time

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Lived Experience Diabetes Reference Group representatives and community members volunteered their time to support the co-creation of this protocol. hours

funding

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Synergy scheme La Trobe

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The current protocol has received internal funding ($6,000 AUD)

Outputs and impacts

learning item

Identify and establish a Reference Group of people living with Type 2 Diabetes.

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Impact: Empower people with T2D to actively engage in research that concerns them

knowledge translation

Enhance the interaction and collaboration between people living with Type 2 Diabetes, health professionals and researchers

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Impact: Increase self-efficacy in managing T2D and promote well-being in the communities.

publication/report/document

Peer reviewed article describing the study design for the establishment of the Reference Group and the associated qualitative research

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Impact: Published protocol