Consumer and Community Involvement

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Involving health consumers and the community in research design and conduct

Consumer involvement in research is fast-moving from nice to have, to must have. Since our formation, Sydney Health Partners has worked to improve the environment for consumer involvement through a number of state and national intiatives.

Consumer and Community Involvement Resources

We are developing and collecting resources to help researchers and clinicians engage in meaningful consumer and community involvement when conducting health and medical research. These resources include brochures to promote research, comprehensive toolkits, training modules, and reports on the current status of consumer and community involvement in Australia.

State Initiatives

Finding Out What Consumers Say

In 2016, Sydney Health Partners conducted focus group discussions with volunteers from our health service partners’ consumer networks. The purpose was to understand their views and preferences about being involved in health research, and determine how to ensure that the contributions of patients and consumers are better understood, respected and fully utilised.

SHP liaised with patient engagement staff in each of the three Local Health Districts (Sydney, Western Sydney and Northern Sydney) and the Sydney Children’s Hospitals Network (at Westmead) who assisted with identifying the volunteers.

This work resulted in a report and a journal publication, as well as informing next steps.

Capacity Building in NSW

Sydney Health Partners has established a strategic partnership with Health Consumers NSW (HCNSW). We are working together to increase the capacity of researchers and consumers to work together within health and medical research.

A scoping review and needs assessment of consumer and community involvement across Sydney Health Partners has informed a series of recommendations about how SHP can foster new connections to guide the development of infrastructure and resources that support wider consumer involvement in health research.

The partnership with HCNSW has also resulted in pilot training sessions for consumers and researchers alike to improve collaboration and better equip both groups to support consumer involvement in health research.

Encouraging Consumer Interest in Research

Working with our LHD partners and consumer advisory groups, Sydney Health Partners coordinated the development of an information brochure which promotes consumer involvement in research. Importantly, the brochure was developed by consumers as well as for consumers.

The brochure encourages members of the public to think more broadly about the ways they can be involved in health and medical research - and includes quotes from consumers who have done so.

National Initiatives

Sydney Health Partners co-leads the national initiative of the Australian Health Research Alliance (AHRA) to improve consumer and community involvement.

Together with the Western Australian Health Translation Network (WAHTN), Sydney Health Partners is working with several regional, state, territory and national organisations to develop a more coordinated and consistent approach to fostering consumer and community involvement in research.

In 2018, Sydney Health Partners coordinated a national survey of all AHRA Centres to assess current consumer involvement activities, which led to four major recommendations for AHRA that are the focus of current AHRA work:

  • Develop minimum standards for good practice in consumer and community involvement in research (Handbook)
  • Facilitate access to, and sharing of, tools and resources (Knowledge Hub)
  • Develop frameworks to evaluate effect of consumer involvement on research (Evaluation Framework)
  • Establish formal alliances with leading international agencies promoting consumer and community involvement in research (International Alliances).

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