Consumer & Community Involvement in Research: Partnering with different demographics

Effective research starts with meaningful engagement. Reaching and working alongside people from diverse backgrounds requires intentional strategies, trusted partnerships, and an understanding of community priorities. The resources below showcase organisations, initiatives, and evidence that can help researchers connect with and involve older adults, people with disability, culturally and linguistically diverse communities, and young people in ways that are respectful, inclusive, and impactful.

Older people

• Co- researching with older adults toolkit: This toolkit provides practical guidance, tools, and real-world examples to help researchers work in genuine partnership with older adults as co-researchers, ensuring their expertise and perspectives shape every stage of the research process. https://pure.hw.ac.uk/ws/portalfiles/portal/150274764/Co-researching_with_older_adults_May22-compressed.pdf

• National Seniors Australia offers a research service whereby their team can connect to a network of over 240, 000 member. Their role includes promoting research to the network and connecting researchers to the community through large-scale data or focus groups. Their networks consists of older people across multiple socio-demographic characteristics. https://nationalseniors.com.au/research/research-services 

• The Plug-In: COTA SA’s social enterprise The Plug-in, is a specialist market insights operation which connects older people with business, industry and researchers. They provide older people an influential voice and enable clients to innovate and improve products, services and policies for the growing 50+ market. https://theplugin.com.au/ 

People with disabilities and who are frail, bedbound and homebound

• The South Australian Council on Intellectual Disability (SACID) is a not-for-profit organisation that advocates with and for people with intellectual disability, providing resources, programs, and opportunities to promote inclusion, rights, and community participation. SACID offers inclusion services, which are all co-designed and co-facilitated by people with intellectual disability, giving you valuable insight from their lived experience. https://sacid.org.au/ 

• Drawing on data from 2,245 participants across 10 studies, the below research highlights that telehealth is a viable, effective alternative to in-person care with the potential to advance equity and access for some of the most underserved groups in our communities.
  https://onlinelibrary.wiley.com/doi/10.1155/hsc/7224151

• This study published in Sexuality and Disability demonstrates how people with intellectual disability can meaningfully lead and shape research when engaged through participatory action research (PAR). The team co-developed inclusive sex education resources with people with intellectual disability, centering their lived experience and expertise. The result? Resources that are accessible, relevant, and affirming while challenging assumptions about who gets to participate in knowledge creation. https://link.springer.com/article/10.1007/s11195-024-09886-3

Culturally and Linguistically Diverse Communities

• A new health initiative called Taking Care of Me is being launched in northern Adelaide with a focus on health and wellbeing for men from culturally and linguistically diverse (CALD) backgrounds. Led by the Multicultural Communities Council of SA (MCCSA), in partnership with Preventive Health SA and The Hospital Research Foundation Group, the two-year project will work directly with six communities to improve health literacy, access to preventive health initiatives, promote early engagement with primary health services, and reduce preventable diseases. https://hospitalresearch.org.au/news/latest-news/empowering-men-from-CALD-communities/

• The New Mainstream is MCCSA’s multicultural market research, insight and advisory service. We connect businesses, industries, and researchers with culturally and linguistically diverse (CALD) communities across Australia. https://mccsa.org.au/the-new-mainstream/

• CulturalQ training by the Multicultural Communities Council of SA equips organisations and individuals with the knowledge and skills to engage effectively and respectfully with culturally and linguistically diverse communities, fostering inclusion and cultural competence. https://mccsa.org.au/culturalq/

Youth

• This 2023 publication in the Medical Journal of Australia highlights critical reflections on the systemic barriers that limit their genuine participation in shaping public health policies and decisions that affect them. https://onlinelibrary.wiley.com/doi/full/10.5694/mja2.52147

• The Adolescent Transition Care SCN aims for young people from all backgrounds and walks of life, to have a healthcare system which works with them and for them to meet their needs and fulfill their potential, enabling equitable outcomes for all. https://ceih.sa.gov.au/partnerships-and-collaboration/statewide-clinical-networks/adolescent-transition-care-scn

• This article offers practical, evidence-based recommendations to help researchers meaningfully engage youth as partners in academic research, ensuring their contributions are valued, roles are clear, and processes are adapted to avoid tokenism and enhance impact. https://pmc.ncbi.nlm.nih.gov/articles/PMC6250868/