Patient and Public Involvement Toolkit

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 viiChapter 1 Introduction 1The toolkit series 1Aim of this toolkit 1Why have a PPI toolkit? 2The language of PPI 2Getting started 2Levels of PPI 4Chapter 2 What is patient and public involvement? 15Why bother with PPI? 15Why is PPI growing in health and social care? 16Changes in PPI legislation 17How does PPI help organizations and services and care change? 18Improving health services 18Improving health research 19Global networks 21Monitoring of health services 23Developing health organizations 24Developing an organizational strategy for PPI 26Define structures within your organization 27Define structures outside your organization 27Four ways to develop PPI 28Chapter 3 How to conduct effective PPI 36Searching for literature about involvement 37Searching the grey literature for PPI publications 38PPI search terms 38Searching and citing issues in PPI 38Involving the right people 39PPI methods and tools 42Reviewing documents 46Designing a questionnaire for a survey 46Running a focus or discussion group 47Running a workshop 49Practical considerations 53An icebreaker: tree types 55Exhibitions and road shows 57Interviews 58Chapter 4 Building relationships 60Recruitment and networking 60Methods for recruitment 60Support and training for participants and professionals 62Interpersonal skills: running effective meetings and workshops 63Role of chairperson or facilitator 63Dealing with difficult situations and managing conflict 65Being inclusive 67Avoiding the pitfalls 71Online communication in PPI 72Communicating in advance 75Chapter 5 Evaluation of PPI 78Evaluating PPI methods and process 79Evaluating the impact of PPI on a service or project 80Evaluating the impact of PPI on the people who took part 81Chapter 6 The future of PPI 85Allocation of resources and better use of resources 86Accessibility of services 88Health professionals working with patients and the public 89Developing trust and credibility between the public and health organizations 89Improving quality of care and reducing harm 90Final thoughts 92Conclusions 92Index 95

"What I liked most about this book is the clear layout of the chapters. It is easy to read and understand, and has plenty of practical ideas on how patients and public can become involved, engaged and empowered ... Overall this book achieves its objective and if you are about to undertake PPI, I would recommend this toolkit as essential reading prior to embarking on that journey." (British Journal of Cardiac Nursing, 1 November 2011)