Person-centred care: from ideas to action

1 Person-centred care : from ideas to actionBringing together the evidence on shared decision making and self-management supportDr Nahid Ahmad, Dr Jo Ellins, Holly Krelle and Michael LawrieResearchOctober 2014 Person-centred care : from ideas to action is published by the Health Foundation, 90 Long Acre, London WC2E 9 RAISBN 978-1-906461-55-3 2014 The Health FoundationThis research was commissioned and funded by the Health Foundation to help identify where and how improvements in health care quality can be made. This research was managed by:Darshan Patel, research Manager 020 7257 8000 AuthorsDr Nahid Ahmad, Dr Jo Ellins, Holly Krelle and Michael Lawrie ICF GHK Watling House 33 Cannon Street, Level 6, London EC4M acknowledgementsWe would like to thank everybody who generously gave their time to take part in and support this research .

2 This includes those who shared their views and experiences with us in an interview, the many more who responded to our requests for information, and the participants who contributed fully and enthusiastically at an expert seminar where we discussed our emerging particular, we would like to acknowledge the ongoing guidance and advice we have received from Professor Judith Hibbard and Professor Mike Bury, as well as the generous contributions of the project advisory board members: Professor Nick Barber, Dr Katie Coleman, Dr Alf Collins, Dr Sara Demain, Dr Simon Eaton, Professor Vikki Entwistle, Darshan Patel, Don Redding, Adrian Sieff and Emma Walker.

3 Your involvement has made this a richer and more rewarding experience for us, and has been instrumental to the success of this note on language and terminology The field of Person-centred care is awash with terminology. As we discuss later in this report, there are myriad concepts and terms used to describe both the broad principles associated with individuals actively participating in their health care , and the specific ways in which participation is enacted and enabled. Many of these terms are contested, some are contentious. Implicit in all are particular ways of understanding patients, professionals and the relationship between them.

4 It is not our intention, nor was it our brief, to resolve this terminological complexity, if indeed this is achievable. Nonetheless, we have sought to use language which reflects an ethos of patients as genuine partners in care , and highlight language and assumptions that detract from or run counter to PERSONThCENTRED care : from ideas to ACTIONE xecutive summary 4 Introduction 4 What did we do?

5 4 The conceptual relationship 4 The policy context 5 The empirical evidence 5 What works? 6 Person-centred care : from ideas to action 8 Chapter 1: Introduction Aims and methods 9 Part 1: What do we learn from the conceptual, policy and research literature? 11 Chapter 2: A conceptual review of self-management support and shared decision making Origins and development of the concepts Conceptual inconsistencies Core components of the concepts Conceptual critiques Definitions adopted by the Health Foundation Possible relationships between the concepts Implications for patients, professionals and the health system Are shared decision making and self-management support interventions suitable for all?

6 25 Contents2 THE HEALTH FOUNDATIONC hapter 3: The UK policy context for a more Person-centred NHS Defining Person-centred health policy The ethical and instrumental cases for Person-centred care Tracing the development of Person-centred care within UK health policy Parallel trends in social care : personalisation and self-directed care Turning policy into practice: where are we now? What does the future hold? 36 Chapter 4: The impacts of shared decision making and self-management support Methods Outcomes of self-management support and shared decision making programmes Clinical outcomes Impacts on health care utilisation Outcomes for different conditions Evidence issues Design issues Implementation issues Measurement issues 50 Part 2: What is the learning from implementation programmes?

7 51 Chapter 5: Introduction to Part 2 Key characteristics of the programmes reviewed 54 Chapter 6: The impacts of self-management support and shared decision making programmes The comparability of outcome data and the challenges of measuring impact Reach Efficacy Adoption Implementation Maintenance 683 PERSONThCENTRED care : from ideas to ACTIONC hapter 7: What works and how? Tools and techniques Supporting practice Implementation 76 Chapter 8: Barriers and enablers to embedding shared decision making and self-management support Health care professional characteristics Patient characteristics Senior level support and ongoing commitment Core team to drive change Alignment with wider priorities and agendas IT systems and system capacity Supportive commissioning and payment systems NHS reforms and wider financial climate Maximising national policy levers 83 Chapter 9.

8 Lessons learned from the programme review 85 Chapter 10: Conclusion 88 Annexes 90 Annex 1: Participants at the expert seminar 91 Annex 2: Members of the project advisory group 92 Annex 3: References 934 THE HEALTH FOUNDATIONI ntroductionThis report is the product of work which has sought to bring together the evidence on shared decision making and self-management support, with the aim of providing greater coherence and clarity in debates about Person-centred care .

9 For more than ten years, the Health Foundation has been working to promote a more Person-centred health care system, where people are supported to make informed decisions about and successfully manage their own health and care , and choose when to invite others to act on their behalf. Shared decision making and self-management support have been important areas of this decision making is a collaborative process through which a health care professional supports a patient to reach a decision about their treatment. The conversation brings together the clinician s expertise, such as the treatment options, risks and benefits, with the areas that the patient knows best: their preferences, personal circumstances, goals, values and beliefs.

10 The approach often involves decision support materials evidence-based information resources, including patient decision aids, brief decision aids, and option grids that are designed to help individuals weigh up their support enables people with long-term conditions to manage their health and wellbeing, day by day, as effectively as possible. It is an active collaborative relationship between patients and health care professionals. Putting it in place involves supporting both patients and health professionals to develop their knowledge, skills and confidence to engage in this new way, as well as ensuring that patients have support before, during and after an appointment.