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Research Design Service London
PPI resources
Watch 'Understanding Patient and Public Involvement' with Clemence Pinel, RDS London methodology lead

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How to do Patient and Public Involvement

The guides below give a background to Patient and Public Involvement (PPI) and give information and ideas about how you could involve patients and the public at various stages of the research cycle. Please select the headings in the left hand column to access the resources.

Patient and Public Involvement in Health and Social Care Research: A Handbook for Researchers (PDF, 2MB)

This handbook offers detailed guidance on how to involve patients and members of the public in research projects. It covers the practical aspects of where to find people to involve and attracting those with the skills, as well as considerations on costs.

It also includes two templates which you can use as a guide (Word versions of the templates are provided below). 


Template advert for patients and the public to get involved in research (DOC, 21KB)

Template role description for patients and the public (DOC, 52KB)

Patient Experience Research Centre  The Patient Experience Research Centre (PERC) at Imperial College London specialises in participatory approaches to health care and research. They have developed some new PPI resources for researchers to use.
This publication provides an introduction for researchers who are new to Patient and Public Involvement. Within this document you will find a background to PPI and its aim as well as step-by-step guidance on how to incorporate PPI in NHS, public health and social care research.
This leaflet provides a brief description of what Patient and Public Involvement is and summarises what is meant by ‘good practice’. Additionally, it details ways to apply basic principles of good practice in NHS, public health and social care research for researchers.
This publication aims to provide guidelines for researchers on PPI conducting health or social care research. Within this document you will find a background to PPI and its aim as well as a step-by-step guide on how to include patients and the public at different stages of the research process. Additionally, this document addresses issues that researchers might encounter throughout the research process and provides best practice examples.

INVOLVE - Supporting PPI in paediatric research

This page provides some brief insight into the issues of Patient and Public Involvement with children and young people and summarises the reuslts of a couple of workshops held on the subject. Additionally, the contact information of the researchers who conducted the workshops is provided.

The guides below are all about payment in PPI. The Payment Guide is intended as information for researchers. The ‘What you need to know’ publication is for you to give to patients and the public that you are involving.
This guide provides information for researchers about the payment of patients and members of the public who are actively involved in health and social care research. This document details the general principles of PPI, and the benefits of covering expenses of involvement. It also discusses the practical considerations when making payments, which includes: what patient and public expenses should be covered, setting rates for payment and the different types of payment.

If you would like to provide the patients or members of the public that you plan to involve in your research with payment information you may wish to give them a copy of INVOLVE’s ‘What you need to know about payment’ guidance. This is an introductory guide for members of the public who are considering active involvement in NHS, public health or social care research.
Benefits advice service for involvement in research A new service by INVOLVE offering personal advice and support on how payment of fees and expenses for public involvement might affect people in receipt of state benefits.
Case Studies and Examples

The reports below both contain examples of how other researchers have undertaken PPI. Through the use of case studies and experience from others, you may find out new ways of undertaking PPI in your research.
This publication details the work of the Senior Investigators by using examples to illustrate the wide range of activities and different ways that Senior Investigators are involving the public across all stages of the research process.
This publication summarises findings from a literature review commissioned by INVOLVE that aimed increase our knowledge of research. This document addresses the difference that public involvement makes to the research process, the impact of involvement on researchers’ and the public, and gaps in PPI in health and social care research drawing on the use of case study examples to illustrate the advantages and pitfalls. 
Additionally, there is also a 14-page summary of the literature review.
Identifying and Prioritising
If you are planning or looking to prioritising research topics or themes with patients and the public, have a look at the work of the James Lind Alliance. The Priority Setting Partnerships paper looks at approaches to setting priorities with Patients and the Public.
National Research Ethics Service Report
This publication summarises a joint study by the National Research Ethics Service (NRES) and INVOLVE. Specifically, this study assessed the extent and nature of PPI in health and social care research from NRES’ routinely collected data as part of the applications process for ethical approval of research projects.