The Knowledgeable Patient E-Book

Sophie Hill

• Herausgeber: John Wiley & Sons
• Kategorie: Fachliteratur
• Serie: CBS - Cochrane Book Series
• Sprache: Englisch

Seitenzahl: 406

Veröffentlichungsjahr: 2011

Beschreibung

Learn how to place communication and participation at the heart of evidence-based healthcare

The Knowledgeable Patient: Communication and Participation in Health sits at the forefront of the challenging, changing 21^st century landscape. The 'knowledgeable patient' as an individual can take many forms: patient, family carer, consumer advocate, or member of the public interested in health issues. In each of these roles, knowledgeable patients interact with health professionals by asking questions about the evidence for treatment, seeking support, exchanging views, and contributing experiences and new ideas on how to improve the health system.

Drawing from several research paradigms, The Knowledgeable Patient is an essential guide to a new era of complex healthcare. Integrating consumer stories and evidence from systematic reviews, it examines key communication and participation issues in a range of contexts, including:

• surgery
• safe medicine use
• chronic disease self management
• the complexity of multimorbidity
• notification of rare disease risk.

The Knowledgeable Patient is international in scope with researched examples spanning living in the community, health service treatment, governance, and policy making. It provides health professionals with new ideas, concepts, evidence, and practical tools to understand the central role of communication and participation to a well-functioning health system.   It is an ideal reference for undergraduate and postgraduate students studying the health sciences.

Watch a video about The Knowledgeable Patient: Communication and Participation in Health from the author, Sophie Hill: bit.ly/xNYCqG

Leseprobe

Contents

Cover

Title Page

Copyright

List of Contributors

Preface

Acknowledgements

Chapter 1: Does communication with consumers and carers need to improve?

What is the broader health policy and social context?

How can things be improved?

The scope of the book

Chapter 2: A new conceptual framework for advancing evidence-informed communication and participation

Introduction

Communication and participation is the central focus

What is the broader context?

Common misconceptions

Conclusion: advancing evidence-informed communication and participation

Chapter 3: Interventions for communication and participation: their purpose and practice

What are interventions?

Features of interventions for communication and participation

Building knowledge in a field of social complexity

A taxonomy of interventions for communication and participation about medicines

New insights into complex interventions

Chapter 4: Identifying outcomes of importance to communication and participation

Past research: what outcomes have been measured?

Future research: a broader set of outcomes required

A taxonomy of outcomes for communication and participation

Using the taxonomy to identify outcomes of importance

Conclusion

Chapter 5: Communicating risk and risk statistics for preventing chronic disease

Why was the research conducted?

What consumers said was important

The perspectives of GPs

Conclusion

Chapter 6: What does participation mean? Reshaping our understanding of the meaning of surgery

Why was the research conducted?

Participation in surgical and medical treatment for carotid stenosis

Implications of the findings for health professionals

Conclusion

Chapter 7: Disclosure: a case study of communication about medically acquired risk for a rare disease

Introduction

Why was the research conducted?

What consumers said was important

Implications of the findings: a framework for evidence-informed communication for people at risk

Discussion and conclusions

Conclusion

Chapter 8: How I used a systematic review from The Cochrane Library

Why was the research conducted?

What consumers said was important

Implications of the findings for health professionals

Chapter 9: Evidence and resources for systems decision-making: improving the experience of health and treatment

Users of evidence and types of decision-making

Evidence to improve health experiences

Sources of evidence for systems decision-making

What kinds of interventions would improve health experiences?

Growth in evidence for systems decision-making

Chapter 10: Looking at online health information more critically

Information, health, literacy and education

Some neglected sides of information literacy

Conclusion: a dose of realism for the future

Chapter 11: Learning to communicate

Introduction

Training of health professionals

Training of consumers

Training directed to both consumers and health professionals

Discussion and conclusions

Conclusion

Chapter 12: Getting the most out of research: using what we know

We already know a lot

Using what we know

Conclusion

Chapter 13: Research agendas for knowledgeable patients

Introduction

Why public involvement is important

Putting research into policy or practice will require…

Chapter 14: Managing multiple health problems: is there evidence to support consumer-focused communication and participation?

What is multimorbidity?

Why is multimorbidity an issue for health systems?

Why is multimorbidity an issue for consumers and carers?

Why and how is multimorbidity an issue for communication and participation?

What does the evidence say? Multimorbidity and evidence-based management of medicines

What are the implications for health professionals, health policy, consumers and carers?

Chapter 15: Partners in care – an evidence-informed approach to improving communication with women in a hospital setting

Communication in hospitals is challenging

Communication is a quality and safety issue

Model for effective implementation of change – and communication

Researching quality improvement in a women's hospital

Insights from the research stages of the project

Insights from the quality improvement stages of the project

Chapter 16: Building health-literate societies

Setting the scene

The health literacy concept

Why is health literacy important?

How can we build health-literate consumers and carers?

Initiatives for building health literacy

Building a health-literate society: envisaging the benefits

Chapter 17: Tools for building research capacity and knowledge transfer

The dynamic relationships of research, practice and policy

‘The best way to learn is to teach’: research users as research creators

Chapter 18: Emerging technologies for health communication

Introduction

This is an issue because …

eHealth: range and relevance to patient communication

Putting research into policy or practice will require …

Index

This edition first published 2011 © 2011, Sophie Hill.

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Library of Congress Cataloging-in-Publication Data

The knowledgeable patient : communication and participation in health / edited by Sophie Hill. p. ; cm. – (Cochrane handbook) Includes bibliographical references and index. ISBN-13: 978-1-4443-3717-4 (pbk. : alk. paper) ISBN-10: 1-4443-3717-3 1. Patient education. 2. Health education. I. Hill, Sophie. II. Cochrane Collaboration. III. Series: Cochrane book series. [DNLM: 1. Patient Education as Topic–methods. 2. Evidence-Based Practice. 3. Health Communication. 4. Patient Participation. W 85] R727.4.K56 2011 613–dc22 2011007205

A catalogue record for this book is available from the British Library.

This book is published in the following electronic formats: ePDF 9781444346824; Wiley Online Library 9781444346855; ePub 9781444346831; Mobi 9781444346848

List of Contributors

Josip Car, Director, eHealth Unit, Department of Primary Care and Public Health, Faculty of Medicine, Imperial College London, London, United Kingdom

Helen Dilkes, Research Officer, Health Knowledge Network, Centre for Health Communication and Participation, Australian Institute for Primary Care and Ageing, La Trobe University, Bundoora, Victoria, Australia

Mary Draper, Independent Healthcare Consultant, Victoria, Australia

Adrian G.K. Edwards, Professor in General Practice, Department of Primary Care and Public Health, School of Medicine, Cardiff University, Cardiff, Wales, United Kingdom

Sophie Hill, Coordinating Editor/Head, Cochrane Consumers and Communication Review Group, Centre for Health Communication and Participation, Australian Institute for Primary Care and Ageing, La Trobe University, Bundoora, Victoria, Australia

Dell Horey, Research Fellow, Division of Health Research, Faculty of Health Sciences, La Trobe University, Bundoora, Victoria, Australia

Maureen Johnson, Manager, Women's Consumer Health Information, The Royal Women's Hospital, Parkville, Victoria, Australia

Jessica Kaufman, Research Officer, Cochrane Consumers and Communication Review Group, Centre for Health Communication and Participation, Australian Institute for Primary Care and Ageing, La Trobe University, Bundoora, Victoria, Australia

John Kis-Rigo, Trials Search Coordinator, Cochrane Consumers and Communication Review Group, Centre for Health Communication and Participation, Australian Institute for Primary Care and Ageing, La Trobe University, Bundoora, Victoria, Australia

Simon Lewin, Senior Researcher, Preventive and International Health Care Unit, Norwegian Knowledge Centre for the Health Services, Oslo, Norway; Health Systems Research Unit, Medical Research Council of South Africa, Cape Town, South Africa

Chaojie Liu, School of Public Health, La Trobe University, Bundoora, Victoria, Australia

Dianne B. Lowe, Research Officer, Cochrane Consumers and Communication Review Group, Centre for Health Communication and Participation, Australian Institute for Primary Care and Ageing, La Trobe University, Bundoora, Victoria, Australia

Joanne E. McKenzie, School of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia

Brian McKinstry, Professor of Primary Care E-Health, Centre for Population Health Sciences, University of Edinburgh, Edinburgh, Scotland, United Kingdom

Sandy Oliver, Professor of Public Policy, Social Science Research Unit and EPPI-Centre, Institute of Education, University of London, London, United Kingdom

Yannis Pappas, Deputy Director, eHealth Unit, Department of Primary Care and Public Health, Faculty of Medicine, Imperial College London, London, United Kingdom

Megan Prictor, Managing Editor, Cochrane Consumers and Communication Review Group, Centre for Health Communication and Participation, Australian Institute for Primary Care and Ageing, La Trobe University, Bundoora, Victoria, Australia

Rebecca E. Ryan, Research Fellow, Cochrane Consumers and Communication Review Group, Centre for Health Communication and Participation, Australian Institute for Primary Care and Ageing, La Trobe University, Bundoora, Victoria, Australia

Nancy Santesso, Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Canada

Ruth Stewart, ESRC Research Fellow, Social Science Research Unit, Institute of Education, University of London, London, United Kingdom

Preface

A Google search of ‘knowledgeable patient’ brings up all the change and flux of the last century. If I take the words of the google search result at face value, what are my thoughts?1

‘Investigating the role of lay knowledge’ (leading me to wonder, does the patient know something that the doctor does not?)

‘A beautiful woman goes to the gynaecologist’ (patients (and women) are still the butt of jokes)

‘Your first knowledgeable patient’ (doctors confront people with knowledge – and questions!)

‘Compliant … the patient needs to be educated – by us – to understand why he needs to follow our instructions’ (the patient knows nothing and must be obedient)

‘Inside the mind of …’ (we have to take knowledgeable patients seriously)

In the twentieth century, patients moved from passivity to participation, and like all major social change, movement was uneven. Being more involved may also mean being more responsible for one's health. This is a public policy dilemma because being sick can lead to vulnerability, and speaking up may not be the priority for the sick person. It confronts us with the test of fairness because poorer people have more ill health than those who are well off materially and socially.

In the twenty-first century, the pressures of this change are apparent. ‘Ordinary’ people have to be extraordinary. Much is expected: keep up to date with screening, know your medicines, recognise the latest risks, manage the family's health, eat sensibly, exercise, plan for end of life, understand your insurance options and communicate your wishes. And possibly contribute to your community by volunteering your time and support.

The ‘knowledgeable patient’, then, is sometimes a patient, sometimes a family carer, sometimes a member of the public interested in health issues, sometimes a consumer advocate, contributing to the health system or to a healthier society – and sometimes all of these things. In other words, the knowledgeable patient is fundamental to improving health and managing illness.

Being more knowledgeable creates a new dynamic in the health system. The knowledgeable patient may create demand, ask questions and seek information. Expectations on people may be too high, though, and people could get lost in confusion, preyed on by unscrupulous parties promoting the latest cure-all. Simply, the health system may be too busy to answer questions, or not able to comprehend the complex demands it faces.

This book sits at the forefront of these changes. It will be an essential guide for the new era of complex healthcare. Its purpose is to help health professionals to understand the vital relationship they will have with the ‘knowledgeable patient’ and equip them to contribute to a new form of health system, based on evidence of effective and responsive strategies for improving communication and participation.

The book is for people who are interested in a ‘consumer-perspective’ on health issues. Those who are training to be health professionals or coming back to study for postgraduate education are an important audience. It is relevant to a broad group, such as those training for clinical roles in health or medicine, or those undertaking education in public health, health policy, health administration or health information management. Another important audience are those who want to read patient stories and who want to know the evidence behind strategies to communicate better and involve people in health.

The book contains a wealth of issues for exploration and discussion, with many different health examples – safe medicine use, chronic disease self-management, surgery, the complexity of multimorbidity and rare disease risk. It contributes research to our growing understanding of knowledge transfer, i.e. getting research into health practice and into people's lives. New issues in health – public involvement in research, emerging health communication technologies and health literacy – are documented. Research examples are not confined to one service domain but span living in the community, health service treatment, governance and policy making.

It is international in scope, giving readers ideas, concepts, taxonomies, evidence and practical tools to understand the central role of communication and participation to a well-functioning health system. It draws on several research paradigms, presenting qualitative research of experiences for integrating with evidence from systematic reviews of controlled trials.

It places communication and participation firmly in the future of evidence-based healthcare. It gives us a language to communicate a better future.

Sophie Hill, Editor

Australian Institute for Primary Care and Ageing, La Trobe University,

Bundoora, Victoria, Australia

June 2011

1.www.google.com.au. I searched with ‘knowledgeable patient’ on 26 June 2009. The extracts are taken from the first five listings of the search result, with the source material being: ‘Investigating…’ Karlsson M (2007) The knowledgeable patient: investigating the role of lay knowledge in the production of health.www.ageing.ox.ac.uk/files/workingpaper_208.pdf. ‘A beautiful…’ hnbaby (2007) Medical Geek Forum.www.medicalgeek.com/medicaljokes/7025-knowledgeable-patient.html. ‘Your…’ Blades K (2004) Pulse.www.pulsetoday.co.uk/article-content/-/article_display_list/10899114/your-first-knowledgeable-patient. ‘Compliant…’ Romano PE (1987) Archives of Ophthalmology.http://archopht.ama-assn.org/cgi/reprint/105/3/315-a.pdf. ‘Inside…’ Dillon B (2008) Geovoices: Geonetric Blog.http://geovoices.wordpress.com/2008/05/06/inside-the-mind-of-the-cancer-patient.

Acknowledgements

This book was made possible by a grant from the Policy and Strategy Unit, Quality, Safety and Patient Experience Branch, Department of Health, Victoria, Australia. In particular, I acknowledge the vision and support of Ms Alison McMillan and Ms Catherine Harmer, senior officers with the Department. The grant supported involvement in the book by staff in the Centre for Health Communication and Participation (CHCP), at the Australian Institute for Primary Care and Ageing, La Trobe University. Additionally, the work of the Cochrane Consumers and Communication Review Group (CC&CRG), which is situated in CHCP, has been supported by the Department of Health Victoria through a Health Service and Funding Agreement since 2000. Many of the ideas and concepts developed in the book have grown from the editorial work of the Group, particularly for Chapters 1–4 and 8–12. The Victorian Department of Health has therefore made a major contribution to building the evidence base for better communication with and involvement by consumers in health.

I also acknowledge the Australian Department of Health and Ageing for successive grants to the CC&CRG since 2001 for Infrastructure funding, Funding for Australian-based Cochrane Collaboration Activities, which have supported work discussed in Chapters , and .

I give thanks to many collaborators for the concepts and research presented in Chapters and . In Chapter , the concept of the multi-directional nature of health communication grew out of collaboration with Professor Sandy Oliver, EPPI Centre, University of London, who is a member of the editorial team for the CC&CRG. In earlier work, when we were articulating the scope of interventions covered by the Review Group and organising them more logically into groups, Sandy emphasised the importance of communication from consumers and the need for health professionals to listen to patients and health consumers in a more formal sense. Ms Judy Stoelwinder, the then Trials Search Coordinator of the CC&CRG, developed the coding scheme used to quantify the trials and direction of communication and participation in Table 3.1. Judy also made a substantial contribution to the development of the taxonomy of outcomes discussed in Chapter and her pioneering work in this field is most gratefully acknowledged. Dr Adrian Edwards, Professor in General Practice at Cardiff University, read Chapter to ensure that the description of risk communication interventions made clinical sense. The research to develop the medicines interventions taxonomy described in Table 3.2 was made possible through two grants from the Canadian Agency for Drugs and Technologies in Health, 2006–2010, PI Professor J Grimshaw, in the Rx for Change database project. Table 3.2 is adapted from Lowe D, Ryan R, Santesso N, Hill S. (2010) Development of a taxonomy of interventions to organise the evidence on consumers’ medicines use, Patient Education and Counseling DOI: 10.1016/j.pec.2010.09.024, with permission of Elsevier, Copyright © 2010, Elsevier Publishing. In Chapter , I define interventions for communication and participation as purposeful, planned and formalised strategies associated with a diverse range of intentions or aims. The provenance for this concept is that I first presented it at a Plenary (A.E.I.O.U. of Communication and Participation’, Hill S, Prictor M. 4th Australasian Conference on Quality and Safety, Melbourne, 21–23 August 2006). A condensed outline was published in Communicating with consumers and carers – Part 1 – Pilot of evidence-based selection of communication strategies to improve communication between consumers/carers and health services, Victorian Quality Council, 2007; and which is reproduced with permission (refer to Chapter below). Chapter extends the concept and combines it with the concept of multi-directionality, which was first published in 2009, Hill S, Directions in health communication, Bulletin of the World Health Organization, 87, 648.

The research conducted in Chapter was part of a larger study funded by the Australian Department of Health and Ageing and conducted for the National Vascular Disease Prevention Alliance, 2003–2004. I acknowledge Professor Andrew Tonkin, Monash University, Australia, who conceived and designed the original study.

The fieldwork for the doctoral thesis which formed part of Chapter was supported by a research grant from the Victorian Health Promotion Foundation, Project no 96-0858, 1997–1999, PI Dr J. Daly.

Chapter drew from research supported by a Public Health Research grant, Department of Human Services Victoria, 2006–2007, PI Dr C Mead.

I acknowledge La Trobe University Faculty of Health Sciences Grant (2007) for support underpinning Chapter . In addition, Rebecca Ryan and I acknowledge our colleagues Dr Klara Brunnhuber, BMJ Evidence Centre, London, and Dr James Woodcock, London School of Hygiene and Tropical Medicine, for the collaboration on multimorbidity, extending our ideas further.

Where derived from the original reports, the material in Chapter is Copyright © State of Victoria, Australia and reproduced with permission of the Victorian Minister for Health. Unauthorised reproduction and other uses comprised in the copyright are prohibited without permission. The knowledge translation research in Chapter was funded by the Victorian Quality Council in 2004, and conducted with a major commitment from the staff at the Royal Women's Hospital. The Project Officer at the CC&CRG was Ms Angela Melder and her contribution to the project's successful conduct is gratefully acknowledged.

The concepts around health literacy presented in Chapter were first developed in two papers. I would like to thank the following for the opportunity to explore the issues: the Australian Department of Health and Ageing and the Cochrane Collaboration Policy Liaison Network for a forum in Canberra on health literacy in 2008; and the National Medicines Policy Partnership for their Forum in Sydney June 2010.

The activities and resources described in Chapter were supported by two sources: a grant to the CC&CRG under the Evaluating the Effectiveness of Participation scheme, Department of Human Services of Victoria, Australia, 2007–2008; and a grant from the Helen McPherson Smith Trust in 2007–08 for the establishment of the Health Knowledge Network.

In Chapter , Table 18.2 is adapted with permission from Professor Aziz Sheikh, and first published in Catwell L, Sheikh A. (2009) Evaluating eHealth interventions: the need for continuous systemic evaluation. Public Library of Science Medicine. 6, e1000126.

The book has several figures that capture concepts and ideas so well, it makes the words redundant! So I would like to acknowledge and thank Helen Dilkes for her original work for Figures 2.1, 2.2, 16.1 and 17.1–17.3. I thank and acknowledge Jessica Kaufman for Figure 7.1 and Dianne Lowe for Figures 9.1 and 9.2.

A few special people helped make the book a reality. Jessica Kaufman and Dianne Lowe, authors of many of the chapters, generously provided many extra hours of assistance in the background. It has been a pleasure to work with such wonderful young researchers. Jessica Thomas came to work with us for four months in 2010 as Managing Editor of the CC&CRG and she helped enormously with editing and organisation. And my brother Tom Hill helped me find the words to write the ‘first page’.

Finally, my thanks go to Wiley-Blackwell, in particular Mary Banks, Senior Publisher, and Jon Peacock, Development Editor, who remained so encouraging and supportive along the way.

Sophie Hill, Editor

Chapter 2

A new conceptual framework for advancing evidence-informed communication and participation

Sophie Hill1 and Mary Draper2

1Coordinating Editor/Head, Cochrane Consumers and Communication Review Group, Centre for Health Communication and Participation, Australian Institute for Primary Care and Ageing, La Trobe University, Bundoora, Victoria, Australia

2Independent Healthcare Consultant, Victoria, Australia

Introduction

It was summer. My (SH) family was having dinner with friends. I was chatting with my host, catching up on the year, and he mentioned he had been to a specialist. The doctor gave him some information about a treatment, which on reflection, sounded too one sided, too ‘gung-ho’. Uncertain, he went to another specialist who gave him more information, and they discussed risks and benefits. From the way he told the story, this second approach implied a more cautious path. My friend weighed up the two opinions and opted to go with the second.

This small story is only one experience, but it strikes a chord because we hear many stories like this now. Health consumers – i.e. the knowledgeable patients of the title – are seeking and weighing up health information based on evidence about health treatments, and thinking critically and sceptically about the information they receive in the context of managing their health day to day and communicating with and making decisions with health professionals.

Much – although not all – of the health treatment information which people receive from health professionals is based on evidence [1]. Used in this broader sense, the term ‘evidence’ could mean several different things. It could mean accumulated clinical experience; it could mean information derived from a new clinical trial; or it could mean information derived from a synthesis of several research studies.