Contents
Foreword
CHAPTER 1 Introduction
The toolkit series
Aim of this toolkit
Why have a PPI toolkit?
The language of PPI
Getting started
Levels of PPI
Further reading
CHAPTER 2 What is patient and public involvement?
Why bother with PPI?
Why is PPI growing in health and social care?
Changes in PPI legislation
How does PPI help organizations and services and care change?
Improving health services
Improving health research
Global networks
Monitoring of health services
Developing health organizations
Developing an organizational strategy for PPI
Define structures within your organization
Define structures outside your organization
Four ways to develop PPI
References
Further reading
European web link
CHAPTER 3 How to conduct effective PPI
Searching for literature about involvement
Searching the grey literature for PPI publications
PPI search terms
Searching and citing issues in PPI
Involving the right people
PPI methods and tools
Reviewing documents
Designing a questionnaire for a survey
Running a focus or discussion group
Running a workshop
Practical considerations
An icebreaker: tree types
Exhibitions and road shows
Interviews
References and further reading
CHAPTER 4 Building relationships
Recruitment and networking
Methods for recruitment
Support and training for participants and professionals
Interpersonal skills: running effective meetings and workshops
Role of chairperson or facilitator
Dealing with difficult situations and managing conflict
Being inclusive
Avoiding the pitfalls
Online communication in PPI
Communicating in advance
Further reading
Useful web resources
CHAPTER 5 Evaluation of PPI
Evaluating PPI methods and process
Evaluating the impact of PPI on a service or project
Evaluating the impact of PPI on the people who took part
References
Further reading
CHAPTER 6 The future of PPI
Allocation of resources and better use of resources
Accessibility of services
Health professionals working with patients and the public
Developing trust and credibility between the public and health organizations
Improving quality of care and reducing harm
Final thoughts
Conclusions
References
Further reading
Index
This edition first published 2011, © 2011 by Julia Cartwright, Sally Crowe, Rafael Perera, Carl Heneghan & Douglas Badenoch.
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Library of Congress Cataloging-in-Publication Data
Cartwright, Julia.
Patient and public involvement toolkit/by Julia Cartwright, Sally Crowe; editors, Carl
Heneghan, Rafael Perera, Douglas Badenoch.
p.; cm.
Includes bibliographical references.
ISBN 978-1-4051-9910-0
1. Patient participation. 2. Health planning. I. Crowe, Sally. II. Heneghan, Carl. III. Perera, Rafael. IV. Badenoch, Douglas. V. Title.
[DNLM: 1. Patient Participation-methods-Great Britain-Handbooks. 2. Consumer Participation-Great Britain-Handbooks. 3. Delivery of Health Care-methods-Great Britain-Handbooks. W 49]
R727.42.C37 2011
362.1-dc22
2010038256
ISBN: 978-1-4051-9910-0
A catalogue record for this book is available from the British Library.
Foreword
“Involve, Engage, Empower” – how often have we heard those words used In health care planning, only to find that they really mean nothing? This book Is the opposite of that. It dares the reader to mean business with patient involvement, engagement, and – most dangerous of all – empowerment. It leaves you with no excuse for not getting on with it, because everything you need is here, bar a tin of shoe polish.
The reason that Julia Cartwright writes with such clarity and authority is that she has actually made this happen. Uniquely, she brought together all the stakeholders in the locality where I practised as a GP for 31 years, and by a mixture of personal skill, energy and endless patience achieved agreement on issues which had plagued us for most of that period. Julia’s co-author, Sally Crowe, is helping to set the agenda for a genuinely patient-centred model of health care through her work with the James Lind Alliance, and its programme of identifying the research that is needed to support this.
When they tell you how to give a presentation, how to deal with unhelpful contributors, how to listen and how to react, do as they say: they know their business.
This is difficult work, and this book could not be more timely. General practitioners driven to despair by having to commission local care within a dwindling budget will find it full of advice on how to share such decisions meaningfully with local patients and politicians. The empowerment of patients is an inevitable part not just of current political rhetoric, but future reality.
User-driven health care is on the way: it challenges each one of us, either as a user or a professional, or both. This jargon-free book, with its excellent links, its clear analysis and its brilliantly practical approach is the best tool I know of to address this coming reality.
Richard Lehman
Medical Adviser,
Health Experiences Research Group,
Oxford University
20 Nov 2010
CHAPTER 1
Introduction
The toolkit series
The ‘toolkit’ series encompasses a number of books and a website published by Blackwell. The concept behind the books is to make complex health care topics accessible and easy to understand to those who need them, particularly:
This book is the fourth in the current series of toolkits, which also includes the Evidence-Based Medicine Toolkit, the Statistics Toolkit and the Searching Toolkit. The writing team for this book is Julia Cartwright and Sally Crowe, both experts in patient and public involvement (PPI). The editing team is Douglas Badenoch, Carl Heneghan and Rafael Perrera.
Aim of this toolkit
The purpose of this toolkit is to help you undertake effective patient and public involvement (PPI) in your work. This could be clinical research, service redesign, policy development or commissioning activities.
This book will take you through the journey of involving patients, carers and the public, with chapters that address specific and important stages of the journey. At the end of each chapter there will be a key points summary table. A list of icons used throughout the book is given on page 14.
We have created resource lists at the end of each section that will help you locate useful resources. While all of the resources were checked before publication, PPI is an evolving and fast-moving world, with new groups, resources and ideas becoming available all of the time. Since going into production, the UK government has issued its White Paper on health (Department of Health, 2010), Equity and Excellence. ‘No decision about me without me’ is the strap line for this policy document which aims to put patients at the heart of decision making in the NHS. This toolkit is therefore a timely resource for those individuals who need to make PPI happen. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_117353.
Why have a PPI toolkit?
PPI is becoming much more integrated into service development at every level of health care, and increasingly is a common part of clinical health research. Despite these advances, PPI is often haphazard and inconsistent, with a plethora of individual but unconnected activities.
Therefore, we decided there is a need for a clear, simple toolkit that will help you to:
EFFECTIVE PPI CHECKLIST
Some of the most effective PPI happens when:
1 There is a clear understanding of what is needed to enable effective involvement.
2 There is recognition of the likely barriers to effective engagement.
3 The purpose and benefits of involvement are clear to everyone.
4 There is attention to detail.
The language of PPI
One of the problems in PPI is the complexity of the language that is used. This has been recognized at the highest level:
The conflation of these distinct terms and the confusion about the purpose of involvement has led to muddled initiatives and uncertainty about what should be done to achieve effective PPI.
UK Parliament, House of Commons Health Committee Report 2007
Getting started
What is PPI?
Healthcare professionals working together with patients and the public to improve the health communities they serve.
health professional A health professional is an organization, team or person who delivers health care in a professional manner to any individual in need of health care services.
Why do PPI?
Who can benefit from PPI?
For this toolkit we use the following terms throughout:
| Term | Definition |
| INVOLVE | To Inform. To consult. ‘Surely we are at the heart of care and treatment? My experiences can help services improve’ |
| ENGAGE | To partner. To work directly with. ‘I want staff to think about opportunities for PPI at the start of all projects’ |
| EMPOWER | To place authority for final decision making in the hands of the patient or the public. ‘We would like to see more patients and public at senior management meetings and having a real input to future strategy’ |
Sections will be colour coded throughout to help you see what level of PPI Is being described or suggested.
The following words are prohibited from this toolkit:
For further words that should not be used when communicating with patients and the public go to:
www.idea.gov.uk/idk/core/page.do?pageId=17636724
KEY TERMS
patient People who are under the care of clinical services, or have recently used these services.
carers People who care for others in an ‘unpaid’ and non-professional capacity.
public People who are not under the care of clinical services but who may have a view on those services.
patient involvement Involving people who have used health services.
public involvement Involving people as citizens who may or may not have used services.
National Health Service (NHS) The NHS is the name used to refer to the publically funded healthcare systems in Great Britain.
Primary Care Trusts (PCT) PCTs are part of the NHS. They provide some primary and community services and commission secondary care services.
Levels of PPI
They illustrate the different settings for PPI involvement and show you how the different levels of PPI can work in practice. Without recognizing the different impacts PPI can have on health care, it may be difficult for you to envisage how you might incorporate it into the development of new services, research proposals and in determining priorities for local health services.
Each example is described from both patient and public perspectives. These themes will be repeated throughout the toolkit; it might be worth referring to them when you are about to investigate your own patient and public involvement project.
Designing hospital signs
Redesigning an outpatient service
A collaborative research proposal in cancer
Developing a patient information resource
A local public awareness campaign for flu
Commissioning a primary care service for mild to moderate depression
Determining local health priorities
Further reading
Department of Health. Equity and excellence: liberating the NHS. London: Department of Health, 2010. www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_117353.
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key message |
|
tool |
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checklist |
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PPI examples and case studies |
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PPI techniques |
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PPI development methods |
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Summary |