Welcome to

Consumer and Community Involvement

Thank you for committing to learn more about Consumer and Community Involvement and how it can make a difference to your projects.

Monash Partners fully supports the involvement of healthcare consumers and the community in research, healthcare improvement and innovation. Our philosophy is research and innovation in partnership with the community, rather than for the community.

Consumer and Community Involvement is a series of six self-paced online modules, providing general and practical information and strategies to meaningfully conduct and embed consumer and community involvement in research and healthcare improvement projects. Significant work has already been undertaken nationally and internationally in this area, and many of these links are referenced in the website. This website is available to anyone interested in consumer and community involvement but is primarily designed to support the needs of researchers and healthcare workers less familiar with this. We hope the website also provides some insights for consumers and community members.

Our Executive Director, Professor Helena Teede,  explains how Monash Partners fit into Australia's healthcare system.

The community are the funders and beneficiaries of healthcare, and health and medical research. We are all the collective custodians of our health and research systems. We must work together through research and healthcare improvement, to shape our health system to best serve our community.

Professor Helena Teede
Executive Director
Monash Partners


Modules

This Module presents the values and principles that underpin effective consumer and community involvement and the benefits of involving consumers in projects.

Upcoming Training

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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.

Reimbursement information to cover any out-of-pocket expenses
Covers the costs your consumers may incur.

Consumer and Community Involvement Advice Form
Helps to register your project and need for support.

Consumer and Community Involvement in Health Research Position Statement
Provides guiding principles for involving consumers and community members in health research. Developed by the Australian Health Research Alliance (AHRA) and the Consumers Health Forum of Australia (CHF).

COVID-19/chronic condition information sheets
Covers chronic conditions such as arthritis, asthma, cardiovascular health, diabetes and stroke in English as well as translated fact sheets in Arabic, Chinese (Simplified and Standard), Greek, Italian and Vietnamese.

Consumer and Community Involvement Infographic
Helps outline ways to work with consumers.

Consumer and Community Involvement Tip Sheets
Explaining how to best communicate to consumers included in your research.

Glossary

Carer­ – Carers are people who provide unpaid care and support to family members and friends who have a disability, mental illness, chronic condition, terminal illness, an alcohol or other drug issue or who are frail aged.

Community – a group of people sharing a common interest (e.g. cultural, social, political, health, economic interests) but not necessarily a particular geographic association. Different types of communities are likely to have different perspectives and approaches to their involvement in research.

Community member – a member of a community.

Consumer – patients and potential patients, carers, family members, support people and people who use health care services. Collectively, ‘consumers’ and ‘community members’ may be referred to as ‘the public’.

Consumer representative – someone who voices consumer perspectives and takes part in the decision-making process on behalf of consumers. This person may be nominated by, and may be accountable to, an organisation of consumers. This consumer representative, however, may have a narrower view as they are speaking on behalf of their organisation and not necessarily that of the wider community.

Consumer engagement reflects an approach involving the development of meaningful relationships with a shared focus. Consumer engagement is underpinned by trust and mutual respect, a commitment by all involved and active two-way dialogue. The term consumer engagement indicates that action is more than simply taking part. 

Consumer advocate – consumer representatives may be trained or may undergo training and be supported to advocate for consumer-centred health care.

Consumer and community involvement – the active partnership between consumers and/ or the community in research and healthcare improvement projects.

Research – an original investigation undertaken to gain knowledge, understanding and insight.

Health and medical research – research with a human health focus.

Healthcare improvement  – continuous and ongoing effort to measurably improve the efficiency, effectiveness, performance, accountability, outcomes, and other indicators of quality in healthcare.

Research process – the planning, funding and conduct of an individual piece of research in addition to the implementation of research and publication of research findings.

Internationally, consumer and community involvement is referred to with different terms. Some of the most common ones include:

Patient and Public Involvement (PPI) - This term is used in the UK to refer to Consumer and community involvement. Public involvement in research is defined as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.

Patient-Orientated Research (POR) – This term is used in Canada and US to refer to a continuum of research by multidisciplinary teams. POR engages with patients as partners, focuses on patient-identified priorities, and seeks to improve patient outcomes.

For definitions of consumer and research/study terms, see Jargon Buster at CIHR (Canada)