Resources

The following are a curated selection of resources to support involve consumers in research.

• Australian Clinical Trials Alliance (ACTA) – Consumer Involvement and Engagement Toolkit

• Cancer Australia – Consumer involvement toolkit

• National Mental Health Commission – Consumer and Carer Engagement: a Practical Guide

• National Health and Medical Research Council (NHMRC) National Institute for Dementia Research (NIDR) – Becoming involved in research – A guide for people living with dementia, their care partners and family members

• NHMRC Guidelines – Planning and budgeting for consumer involvement

• Australian Healthcare and Hospitals Association – Experience Based Co-Design Toolkit

• Monash Partners – Consumer and Community Involvement

• Telethon Kids Institute – Planning for Consumer and Community Participation in Health and Medical Research – A practical guide for health and medical researchers

• Telethon Kids Institute – Consumer and Community Participation in Health and Medical Research – A practical guide for health and medical research organisations

• Western Australian Health Translation Network (WAHTN) – Involving Consumers in Health and Medical Research Handbook

• WAHTN – Consumer and Community Involvement Program (CCI Program) Resources

• Australian Health Research Alliance – Consumer and Community Involvement

• Victorian Comprehensive Cancer Centre (VCCC) – Consumer engagement and their resources 

• South Australian Health and Medical Research Institute (SAHMRI): Community Engagement Toolkit

• Walter and Eliza Hall Institute (WEHI) – Consumer and Research

• NSW Agency of Clinical Innovation – Codesign toolkit

• La Trobe – Consumer Participation in Research

• Health Issues Centre – Consumer Participation Resource for Researchers

• IAP2 – Resources

• IAP2 – Community Engagment Procedure

• TransCelerate (US) –  The Patient Technology Toolkit and Associated Assets 

• EUPATI (EU) – Toolbox

• PARADIGM (EU) – Patient Engagement Toolbox

• National Institute for health and Care Research (NIHR, UK) – Patient and Public Involvement (PPI) Resources

• NHS Health Research Authority (HRA, UK) – Public involvement

• UK Research and Innovation – Co-production in Research

• Patient-Focussed Medicines Development (PFMD, EU) – Patient Engagement Suite

• Guidelines International Network – Patient and Public Involvement in Guidelines – Toolkit

• Synpase (EU) – Patient Engagement Resources

• US National Health Council – Patient Engagement Compensation and Contracting Toolbox

• US National Health Council – Patient Engagement

• Cancer Research UK – Patient Involvement Tooklit for Researchers

• James Lind Alliance – Step-by-step guide to the processes involved in a Priority Setting Partnership (PSP)

• The Patient-Centred Outcomes Research Institute (PCORI, USA) – Engagement Literature

• Canadian Institute of Health – SPOR resources

• BC Support Unit Canada – Resources

• The Global Health Network – Community engagement resources

• Patient Research Exchange – Tools and Methodology

• Ireland Health Research Board (HRB) – Public and Patient Involvement in Research

• Imperial College London – Patient and Public Involvement Resource Hub

• Sense about Science.org – Public Engagement Handbook 2017

• The European League Against Rheumatism (EULAR) – Patient Research Partners

• National Health and Medical Research Council (NHMRC) + Consumers Health Forum of Australia (CHF) – The Statement on consumer and community involvement in health and medical research

• NHMRC – Engaging Aboriginal and Torres Strait Islander people in guideline development

• Australian Commisions on Safety and Quality in Healthcare (ACSQHC) – Standard 2: Partnering with Consumers

• Cochrane – Statement of principle for consumer involvement in research

• Patients Included – Charters 

• UK definitions of participate, involve and engage

• A research handbook for patient and public involvement researchers 2018

• Nature – SPECIAL ISSUE | 03 OCTOBER 2018 Co-production of research

• Nature Oct2019 Community engagement: a starter pack for scientists

• Clinical and Translational Science Awards Consortium Task Force on the Principles of Community Engagement (Book)

• EULAR – Recommendations for the inclusion of patient representatives in scientific projects

• The European Patients Academy on Therapeutic Innovation (EUPATI) Guidelines on Patient Involvement in Research in Development – 5 papers.

• Guidance on Co-Producing a Research Project – INVOLVE UK – Explains the key principles and features of co-producing a research project and suggests ways to realise the principles and key features.

• GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research

• STARDIT – Standardised data on initiatives: Beta Version (2022)

• When participants get involved: reconsidering patient and public involvement in clinical trials at the MRC Clinical Trials Unit at UCL Trials (2018)

• Ten Briefing Notes for Researchers– INVOLVE UK. Includes information on how to involve members of the public in research. Case studies are provided to illustrate key concepts.

• Sydney Health Partners Research (2018) Involving Consumers in Research – What do consumers say?

• Kubicek, K. and Robles, M. (2016) Resource for Integrating Community Voices into a Research Study: Community Advisory Board Toolkit.

• 2017 Emerging Guidelines for Patient Engagement in Research

• Patient engagement in research: a systematic review 2014

• Health issues centre – Consumers key partners in health research

• AHRA (2018) Consumer and Community Involvement in Health and Medical Research: An Australia-wide Audit

• Miller et al (2017) Integrating consumer engagement in health and medical research – an Australian framework

• McKenzie et all (2022) A snapshot of consumer engagement in clinical trials in Australia: results of a national survey of clinical trial networks and research organisations

• Patient Empowerment Network (2018) A patient engagment manifesto – 6 principles of partnership

• Better Together Principles for Co-design – South Australia

We are frequently asked for guidance about remunerating consumers.

 

AccessCR supports the principle that consumers should be recognised and reimbursed for their time and expenses spent contributing their health experiences and broader expertise as a partner in research. Reimbursement should always be offered, however choice should remain with the consumer as to whether they would like to accept what is on offer. Researchers must also follow-through on the promises they make, with timely, accessible payment and recognition.

 

Money is also not the only option – training, conference attendance, authorship, presentation opportunities and more – these are other ways in which consumers may be recognised for their efforts and contributions.

 

The following outlines the guidances we are aware of, but we are conscious there is ongoing work in this area.

 

This list is not every resources or document on consumer and community involvement in research. It is some of the content we think is particularly useful or interesting. As we find additional content we think is useful, we will update the list. If you find any non-current content, or additional resources you think others would find valuable that we should add, please let us know.

 

 

Date content last updated: 30Nov2022