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 HealthQWest 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
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