Sharing the costs of ill health is the mark of a civilised society. However, every society has limited healthcare resources, and must therefore make finely balanced decisions on how best to allocate them. The National Institute for Health and Clinical Excellence (NICE) has been responsible for the UK's health resource allocation for a decade. To inform its decisions, a Citizens Council of 30 members of the general public was established by NICE to gauge the underlying values of the society it serves. A number of national and international organisations and governments have asked NICE to share its experiences in establishing and running the Citizens Council, and encouraging and supporting patient involvement. As part of NICE's response, this book provides an up to date 'position statement' on the Citizens Council, an exploration of how patients interact with NICE and how their views are taken into account, and a national and international perspective on new issues facing the interaction between patients, the public and healthcare provision. 'Reading this volume will enable you, the reader, to assess how well NICE is acting as a means of fostering responsible public choice. I hope you profit from its chapters as much as I have.' - Albert Weale in his Foreword
Figures and tables. List of contributors. Glossary. Preface. Foreword. 1. The establishment of NICE. 2. NICE’s commitment to patient, carer and public involvement. 3. Patient and carer involvement in NICE clinical guidelines. 4. Patient involvement in NICE technology appraisals. 5. From patient involvement in clinical guidance to lay involvement in public health guidance. 6. Patient involvement in NICE interventional procedures. 7. Patient and voluntary organisation support for implementing NICE. Guidance. 8. Community engagement to improve health — how well is NICE implementing its own recommendations? 9. Background to NICE’s Citizens Council. 10. Ordinary people, extraordinary wisdom. 11. The Citizens Council reports. 12. Social value judgements: implementing the Citizens Council report. 13. The view of a Citizens Council member. 14. A Citizens Council in the making — dilemmas for citizens and their hosts. 15. Accountability for reasonableness and the Citizens Council. 16. Engaging the American public in setting healthcare priorities. 17. Harvesting and publishing patients’ unanswered questions about the effects of treatments. 18. The future of patient and public involvement: some concluding thoughts.