Practical resources for everyday public involvement in research

While the How To guides here attempt to pin down how we can do exciting work in areas that have not been much developed, there are also a bunch of everyday things that need to be set in place to make public involvement a positive experience for everyone. So below you will find a collection of simple checklists, tools and other resources that I hope will be helpful.  Some items straddle more than one category, so do look over everything rather than stick too rigidly to the subheadings.

Understanding the research process

• Benefits of public involvement in research
• Stages of the research process and how public contributors can get involved at each stage.
• The five minute Public Contribution survey, to help research teams take stock.
• Grow your skills through getting involved in research. – a checklist for use by public contributors to help in planning your personal development.
• Reducing the impact of missing data by Marie Curie et al
• Public involvement in research into which statistical methodology is best
• Crowdsourcing for systematic reviews
• Involving stakeholders in systematic reviews (Pollock et al)
• Understanding the difference between research participation and public involvement in research (Hanley et al 2019)

Connecting people and opportunities

• See Public Face – register here for current issues or see back issues here
• Good practice for involving carers in research
• How to manage overlapping roles in research
• How to recruit public contributors on to funding panels
• Leaflet inviting members of the public to get involved in research
• Questions public contributors should ask researchers before offering to help (guidance from the Charities Research Involvement Group)
• Public Involvement Opportunity form
• Sample advert to recruit public contributors
• How to write your CV as a Public Contributor

Engagement and participation techniques

• Library of facilitation techniques
• Guide to engagement techniques – Leicester
• Guide to engagement techniques – Derby
• Catalogue of participation techniques from Involve 
• Crowd wise – a participative decision making process
• Community Empowerment Discussion Toolkit 
• Why do some people become research participants
• How to organise an Involvement Workshop (by Sue Brown)
• How to run a Focus Group
• Equality and diversity monitoring
• Public involvement in a digital world (by Hildegard Dumper)
• Using cards to prompt discussion (by Marianne Boenink)

Consent and conduct

• Values base for PPI activities
• Declaration of interests form
• Keeping things confidential
• I consent to being photographed and filmed 
• Involvement agreement – so everyone knows what to expect
• Code of conduct for meetings
• Keeping everyone safe in our building
• What we expect of public contributors
• Involvement evaluation form for public contributors to give feedback
• Getting permission to be involved
• Getting permission flowchart
• Complaints procedure for public contributors
• Volunteer Complaints policy
• Reference request form
• Stopping involvement – by the Shared Learning Group for Involvement

Organising the involvement work

• PPI for Bureaucrats
• Principles and standards for public involvement in research 
• Different models of how to do PPI in research
• Benchmarking PPI – blank scoresheet
• Benchmarking PPI – summary table
• Monitoring public involvement in research – some milestones that show public involvement is happening
• Embedding public contribution into the whole organisation

Money

• Advice from NIHR and HRA on participation payments, 27 June 2022
• How to make sense of our payments offer
• Making participation payments to children and young people
• How to set payment levels for research participants
• Information for the Jobcentre about PPI payments
• NIHR guidance for researchers on payments
• NIHR guidance for Public Contributors on payments
• Official position on the HMRC IR35 regulations
• How to build an organising logic for structuring recognition payments for Public Contributors
• How to estimate the costs of public involvement in your research project

Training and development

• Mentoring relationships and 10 top tips
• Training public contributors for involvement in research – True project
• Ground rules for everyone who attends an academic seminar
• Good practice for involving carers in research
• Explaining jargon 
• How to write in plain English
• A glossary of terms used in evaluation 
• Training needs self assessment form for public contributor
• Guide to finding and reading research
• How to arrange a Patients Included conference

Applying for research funding

• Questions to ask a researcher who is looking for PPI
• Template for reviewing a research funding application 
• How to assess a lay summary – by MacMillan Cancer Support
• Draft changes to funding application form to allow for public representative co-applicants 
• Guidance for research funding applicants on Confidentiality
• Role description and person specification for a public member of a research steering group, or on a group developing a research proposal

Recruiting and selecting staff

• Flowchart on how to involve people in your staff recruitment process and interview panel
• Toolkit on involving children and young people in recruitment and selection – BaNES
• Brief for public contributors who volunteer to sit on staff recruitment interview panels
• Interview questions for Public Contributors

The role of Lived Experience Researcher

• Role description and person specification for service user researcher 
• Application form for service user researcher
• Interview questions for service user researcher
• Job description for a peer research assistant
• Commentary on Research Passport application form
• Example from 2024 of a Job Description for a Peer Researcher in Addictions. 

The role of public adviser to a research project

• Application form for public contributor to a research project
• Evaluation form for public adviser to research project to give feedback
• Guidance notes to help you apply to become a public adviser
• Good practice guidelines on the recruitment and involvement of public members on Trial Steering Committees and Study Steering Committees – NIHR, April 2021, along with a Role Description 
• Role Description for Chair and Vice Chair

Sample job descriptions for public involvement staff

In the list below, JD means Job Description and PS means Person Specification

• RDaSH – Expert by Experience Coordinator – JD & PS – March 2023
• UCL ARC PPIE Lead – JD – December 2021
• Leeds – Public Participation Manager – Band 8a – August 2021
• EMAHSN – PPI and Equalities Coordinator – September 2021
• Guy’s and St Thomas – Patient and Public Engagement Specialist – JD and PS – July 2021
• McPin – Senior Public Involvement Officer in Research – June 2021
• Birmingham University – PPI and Engagement Manager – June 2021
• Nursing and Midwifery Council – Senior Public Engagement Officer – June 2021
• Imperial College London – Public Engagement Officer – June 2020
• NHS England – Public Participation Project Manager – Nov 2020
• NICE – Public Involvement Advisor – June 2020
• Birmingham University – PPI Officer – Dec 2018
• Nottingham University Hospitals – PPI Facilitator – March 2018