Consumer and Community Involvement

COVID-19 and Consumer and Community Involvement

The COVID-19 pandemic is impacting the lives of Australians. Research projects and changes to healthcare are being developed rapidly. Consumers and communities are a critical partner in this crisis and we need to ensure their voices are being heard in our COVID-19 healthcare and research efforts.

Monash Partners has formed a COVID-19 Consumer Advisory Committee. If you would like to speak to someone or engage with members of this committee, you can contact Dr Darshini Ayton or Dr Sandra Braaf. Or view our infographic, HERE.

Resources

We understand that consumers are busy too and we appreciate their commitment to our projects. If you plan to include consumers in your research, below you will find some resources to assist.

Forms

Here are some tips  and forms to help you and how to best work with your consumers.

You can complete this Consumer and Community Involvement Advice Form to register your project and need for support.

You will also find reimbursement information to cover any out-of-pocket expenses your consumers may incur, HERE.

Tip sheets

If you plan to include consumers in your research, below you will find some tip sheets to help you decide how to best communicate.

What is Consumer and Community Involvement?

Monash Partners fully supports the engagement and participation of healthcare consumers and the community in research and health care innovation and improvement. Our philosophy is research and innovation in partnership with the community, rather than for the community (i.e. nothing about us without us).

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      We believe that collaborative partnerships between consumers, community, consumer representatives, stakeholders and researchers are vital to enhancing public confidence in research and ensuring research is relevant and translated for improved health outcomes.

      Consumer and community involvement (CCI) is about researchers working in partnership with consumers and community members throughout the research cycle. This ensures that the community are actively involved in developing potential research questions as well as advising on research priorities, practices and policies.

      A consumer is a person who may indirectly or directly use a health service, such as a patient, carer or potential patient. Community is a group of people with a common interest. A researcher is somebody conducting an organised and systematic investigation of a subject.

      Benefits of consumer and community involvement in research have been recognised by the National Health and Medical Research Council (NHMRC) and the Consumer Health Forum of Australia and outlined in the Statement on Consumer and Community Involvement in Health and Medical Research 2016.

      Consumer and Community Involvement

      Spend five minutes finding out how two Australian mums feel about CCI. Below, Professor Helena Teede explains how much better our health care could be if we involved our community, our patients and their carers.

      “IT WAS ABOUT PEOPLE LIKE ME, AND IT WAS TO HELP PEOPLE LIKE ME. IT WAS A DELIGHTFUL EXPERIENCE TO ACTUALLY HAVE SOME INFLUENCE OVER THE DIRECTION IN WHICH THE RESEARCH SHOULD HEAD.” Susan, a Monash Partners CCI advocate.

      Why do we need community and consumers involved?

      Consumer and community involvement in research requires planning and a clear understanding of everybody’s role. The Consumer voice may be included through consumer focus/steering groups, consumer advisory committees, community conversations, research buddy programs, surveys, research priority setting partnerships, reviewing grant applications or laymen summary reviews. It is important that the consumer involvement process is defined for each project and that both consumers and researchers have adequate training.

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      Consumer and community involvement is a priority for the Australian Health Research Alliance (AHRA), comprising the Advanced Health Research and Translation Centres (AHRTCs) and the Centres for Innovation in Regional Health (CIRH) recognised by the National Health and Medical Research Council (NHMRC).

      Monash Partners is a member of the AHRA CCI steering committee with initial priorities being to:

      • Facilitate consumer and community representation on other AHRA steering committees that oversee joint national initiatives
      • Map existing CCI activities among AHRA members, including resources and training materials and make recommendations to AHRA on strategies to increase CCI
      • Develop, implement and evaluate such strategie
      • Develop an agreed national framework to coordinate and advance CCI across the AHRA.

      Australians are already benefitting from CCI

      Australian achievements in Consumer and Community Involvement are evident through enabling networks such as the:

      Internationally, the National Institute of Health Research in the United Kingdom recognised the need for public involvement in research and set it as a strategic priority in 2006. Significant achievements have been observed in public involvement activities including:

      • Public reviewing of NIHR applications
      • James Lind Alliance Priority Setting Partnerships (JLA PSPs) which bring together patients, carers and clinicians to identify research priorities in a range of disease areas
      • INVOLVE: a national advisory group bringing together expertise, insight and experience in the field of public involvement in research.

      Check out what resources are available, here.