Consumer Participation in Research
We are often asked about how to involve consumers as partners in research. To answer some of those questions, we have put together this webpage as a ‘starter kit’ of useful resources for researchers wanting to involve consumers in their research.
We will update this page regularly as we develop or find new resources through our work.
If you have any questions, comments or a know of a resource we could share please contact Louisa Walsh – louisa.walsh@latrobe.edu.au
Our resources
Partnering with Consumers in Research: Current Evidence and Examples
This presentation by Anneliese Synnot covers commonly used Australian and international definitions for 'consumers' and 'engagement', why consumers and researchers want to work together (what they get out of it), the research stages and activities in which consumers can be engaged, the methods of engagement and what good engagement looks like. Published 2018.
Australian resources
Statement on Consumer and Community Involvement in Health and Medical Research (2016)
This joint statement from Consumers Health Forum of Australia and the National Health and Medical Research Council has been developed with the aim of supporting consumer and community involvement across all types and levels of health and medical research.
Toolkit for Consumer and Community Involvement in Health and Medical Research (2020) This toolkit from the National Health and Medical Research Council provides a range of resources to guide researchers in the involvement of consumers as research partners.
Cancer Australia Consumer Involvement Toolkit
Cancer Australia from the Australian Government has developed a consumer involvement toolkit with resources about consumer involvement targeted at various roles across health and cancer care – including researchers and consumers.
International resources
National Standards for Public Involvement in Research (UK)
These public involvement standards produced by the Public Involvement Standards Development Partnership in the UK aim to provide people with clear, concise benchmarks for effective public involvement in research. Published 2018.
Patient and Public Involvement in Health and Social Care Research: A handbook for researchers (UK)
This very practical guide on planning and undertaking public involvement from the NHS National Institute for Health Research includes templates for advertisements and role descriptions, and advice on costs, payment and evaluation. Published 2014.
Workbook to Guide the Development of a Patient Engagement in Research (PEIR) Plan (Canada)
This workbook, developed by The University of British Columbia and Arthritis Research Canada aims to facilitate high-quality partnerships between researchers and patient partners undertaking research projects together. It presents guidance for research project teams to plan their activities. Published 2018.
Imperial College London PPI Resource Hub (UK)
The Imperial College London maintains a very comprehensive online hub of patient and public involvement resources, templates and toolkits.
Should Money Come Into It? A Tool for Deciding Whether to Pay Patient-Engagement Participants (Canada)
The Change Foundation in Canada have created a decision tool and resource around whether, and how much, to pay consumers involved in research and other consumer engagement activities. Published 2017.
Guidance for Reporting Involvement of Patients and the Public 2 (GRIPP2)
Consumer involvement is a growing field of research and we encourage any researchers undertaking consumer involvement to write and publish about their approach and experience. GRIPP2 is the first consensus-based reporting guideline developed with input from the international patient and public involvement community and can be used to report on the results of involving consumers in research. Published 2017.