Julia Cartwright & Sally Crowe 
Patient and Public Involvement Toolkit 

* Providing information to implement a new core healthcare requirement – patient involvement

* Including real case scenarios to illustrate the principles of effective PPI

* Following the unique Toolkit series format of flowcharts and layouts that guide the reader through each section

Table of Content

Foreword vii

Chapter 1 Introduction 1

The toolkit series 1

Aim of this toolkit 1

Why have a PPI toolkit? 2

The language of PPI 2

Getting started 2

Levels of PPI 4

Chapter 2 What is patient and public involvement? 15

Why bother with PPI? 15

Why is PPI growing in health and social care? 16

Changes in PPI legislation 17

How does PPI help organizations and services and care change? 18

Improving health services 18

Improving health research 19

Global networks 21

Monitoring of health services 23

Developing health organizations 24

Developing an organizational strategy for PPI 26

Define structures within your organization 27

Define structures outside your organization 27

Four ways to develop PPI 28

Chapter 3 How to conduct effective PPI 36

Searching for literature about involvement 37

Searching the grey literature for PPI publications 38

PPI search terms 38

Searching and citing issues in PPI 38

Involving the right people 39

PPI methods and tools 42

Reviewing documents 46

Designing a questionnaire for a survey 46

Running a focus or discussion group 47

Running a workshop 49

Practical considerations 53

An icebreaker: tree types 55

Exhibitions and road shows 57

Interviews 58

Chapter 4 Building relationships 60

Recruitment and networking 60

Methods for recruitment 60

Support and training for participants and professionals 62

Interpersonal skills: running effective meetings and workshops 63

Role of chairperson or facilitator 63

Dealing with difficult situations and managing conflict 65

Being inclusive 67

Avoiding the pitfalls 71

Online communication in PPI 72

Communicating in advance 75

Chapter 5 Evaluation of PPI 78

Evaluating PPI methods and process 79

Evaluating the impact of PPI on a service or project 80

Evaluating the impact of PPI on the people who took part 81

Chapter 6 The future of PPI 85

Allocation of resources and better use of resources 86

Accessibility of services 88

Health professionals working with patients and the public 89

Developing trust and credibility between the public and health organizations 89

Improving quality of care and reducing harm 90

Final thoughts 92

Conclusions 92

Index 95

About the author

Julia Cartwright is a research psychologist and director of Flex Business Consulting Ltd. She has an expert knowledge in patient information and health communications and has worked as a strategic advisor to Health QWest Scotland. She has also held research posts at The Picker Institute, The University of Oxford’s Health Service Research Unit and Oxford Brookes University. She is a member of The Community Partnership Forum, The Better Healthcare Programme for Banbury & Surrounding Areas.

Sally Crowe is a Director of Crowe Associates Ltd. She has extensive experience in providing consultancy, training and project management for patient and public involvement in health and social care research. She is a project consultant to the PRIME (Partnership for ME Research) Project, and the UK Prostate Link project. She is currently managing the development of a service user and carer component to the social care themed Log on to Care site and chairs the monitoring and implementation group of the James Lind Alliance, a national initiative that aims to tackle treatment uncertainties in health care.

Series editors: Douglas Badenoch, Carl Heneghan, Rafael Perera