Consumer and Community Involvement

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

Monash Partners is a partnership between leading health service, teaching and research organisations focused on innovating for better health.

Our partners include: Alfred Health, Monash Health, Monash University, Peninsula Health, Eastern Health, Cabrini Health, Epworth HealthCare, Burnet Institute, Hudson Institute, and Baker Heart and Diabetes Institute. Our associate members are La Trobe University and Latrobe Regional Hospital.

The purpose of Monash Partners is to connect researchers, clinicians and the community to innovate for better health for around three million Australians, and beyond. Monash Partners is one of seven NHMRC-accredited Advanced Health Research Translation Centres whose aim it is to enable and support the translation of research and innovation into better health outcomes for the Australian community.

We are a member of the Australian Health Research Alliance with national reach and engagement.

Modules

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

Module Objectives

On completion of this Module you will be able to:

Describe consumer and community involvement and the benefits
Distinguish between consumer engagement, participation and involvement
Identify the terms used to describe consumer and community involvement in Australia and internationally
Identify key policy documents including the NHMRC position statement on consumer and community involvement
Discuss the values and principles of consumer and community involvement
Explain how consumer and community involvement can be included at each stage of the research or project cycle.

This Module includes practical suggestions for getting started with consumer and community involvement.

Module Objectives

On completion of this Module you will be able to:

Explain the benefits of early consumer involvement in health research or healthcare improvement work
Identify relevant strategies for consumer and community involvement at each stage of the research or project cycle
Differentiate between the levels of consumer engagement
Identify different tools for assessing consumer involvement readiness.

This Module provides an overview of the principles for ethical consumer and community involvement practice.

Module Objectives

On completion of this Module you will be able to:

Describe ethical principles for consumer and community involvement
Describe the benefits of involving consumers in the development of ethics applications.

This section provides information on how to find consumers, as well as orientation processes and reimbursement.

Module Objectives

On completion of this Module you will be able to:

Identify strategies to connect with consumers, including consumers from diverse and underserved communities
Describe ways to foster meaningful engagement with consumers and communities
Explain how power dynamics and imbalances can occur in consumer and community involvement, and outline ways to reduce imbalances
Adapt examples of position descriptions, terms of reference and other documents to support your own consumer and community involvement practice
Explain the importance of remuneration for consumers and identify remuneration guidelines to support your own consumer and community involvement work.

This module provides suggestions for including a consumer on an established project or steering committee and establishing a committee or advisory group of consumers.

Module Objectives

On completion of this Module you will be able to:

Identify strategies for including consumers on established project or steering committees
Explain the steps and considerations in establishing a consumer advisory group or committee
Identify where to find resources to assist with establishing and administering a consumer advisory group or committee.

Establishing committees and advisory groups

The Module will provide you with information about some participatory research methods. You will learn features of the various methods and some useful resources.

Module Objectives

On completion of this module you should be able to:

Identify the key features of participatory research methods and how these apply to co-design processes
Outline how co-design can be applied in different contexts
Explain strategies for sharing power in co-design processes

Co-Design Methods and Strategies

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.

Bellows et al. (2015), Patient Experience Journal, Meaningful and effective patient engagement: What matters most to stakeholders

Caldwell, J., Hauss, S., & Stark, B. (2009). Journal of Disability Policy Studies, Participation of individuals with developmental disabilities and families on advisory boards and committees

Doria et al. (2018), Research Involvement and Engagement, Sharpening the focus: differentiating between focus groups for patient engagement vs. qualitative research

Greenhalgh et al. (2019), Health Expectations, Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot

Hoddinott et al. (2018), F1000Research, How to incorporate patient and public perspectives into the design and conduct of research

Mack, L. (2010). Journal of Ambulatory Care Management, Community Advisory Committees: Drivers of consumer, carer, and community participation in Victoriaʼs public health services

Manafò et al. (2018), PLOS ONE, Patient and public engagement in priority setting: A systematic rapid review of the literature

Alberta SPOR Support Unit (2018), Patient engagement in health research: A how-to Guide for patients

Alberta SPOR Support Unit (2018), Patient engagement in health research: A how-to guide for researchers

Patient-Centred Outcomes Research Institute (PCORI) (2016), Engagement rubric for applicants

Cancer Australia, Example of consumer representative position description (PD)

Cancer Australia, Position description for Community Advisory Committee member

Cancer Australia and Cancer Voices Australia (2011), National framework for Consumer Involvement in cancer control

Health Research Authority/Involve (2016), Public involvement in research and research ethics committee review

Health Research Authority UK, Public involvement

Health Research Authority/Involve (2016), Impact of public involvement on ethical aspects of research

Health West Partnership, Community participation resources

Involve (2013), Values, principles and standards for public involvement in research

Involve, Where and how to involve in the research cycle

Involve UK, Methods

National Health and Medical Research Council (NHMRC), Consumer involvement

Safer Care Victoria, A guide to consumer remuneration

Vic Health (2013), Community advisory committee guidelines

Victorian Agency for Health Information, Safer Care Victoria, How to engage a consumer representative

Victorian Comprehensive Cancer Centre, Case studies

Victoria State Government Health and Human Services (2019), Client voice framework for community services

Western Australian Health Translation Network WAHTN, Consumer and Community Involvement handbook

An Introduction to Monash Partners Professor Helena Teede, Executive Director, Monash Partners

Who are consumers?

Values and principles of consumer and community involvement in research projects

Priority setting, examples provided relate to depression and chronic kidney disease

The importance of engaging consumers early

How patients can be involved throughout the research cycle

The difference between involvement, engagement and participation

Partnering between consumers and researchers

Ethics and Consumer and Community Involvement in Health Research

Setting up a Consumer and Community Involvement Group

Meaningful engagement

What is quality engagement

Representation and Diversity

Alberta Innovates, Resources - Patient engagement platform

Australian Clinical Trials Alliance (ACTA), Consumer involvement, engagement and training resources

Australian Clinical Trials Alliance (ACTA), Cost calculator

Australian Clinical Trials Alliance (ACTA), Reimbursing consumers

Health Issues Centre, Reimbursing consumers

National Health and Medical Research Council, Consumer and community involvement in health and medical research

Safer Care Victoria, How to engage consumer representative

Victorian Comprehensive Cancer Centre (VCCC), Introduction pack

Victorian Comprehensive Cancer Centre (VCCC), Toolkit resources

Vic Health, How to co-design with young Victorians

Bagley et al. (2016), Research Involvement & Engagement, A patient and public involvement (PPI) toolkit for meaningful and flexible involvement in clinical trials – a work in progress.

Maxwell et al (2020), Vision for the future of UK clinical trials: patient, public and participant perspectives.

National Institute for Health Research (2020), Improving inclusion of under-served groups in clinical research: Guidance from the NIHR INCLUDE project.

Patrick-Lake (2018), Clinical Trials, Patient engagement in clinical trials: The Clinical Trials Transformation Initiative’s leadership from theory to practical implementation.

PIRRIST Study Team (2019), Planning patient and public involvement in surgical trials.

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)

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