Edited by 2009 . Paperback , 190 pages with index . ISBN 9781846193873 . RRP: £29.99 .and . Published by Radcliffe Publishing ,
Reviewed by Dell Horey
Division of Health Research, Faculty of Health Sciences, La Trobe University, Victoria
This book offers insight into how patients and the broader public can be involved in the decision-making of a large, public, health organisation, the National Institute for Health and Clinical Excellence (NICE). It is the first of its kind to provide such a comprehensive account of the processes used across the organisation. It gives particular attention to its experience with a Citizen's Council, a modified citizen jury innovation adopted by NICE to elicit community social values around certain issues. Although the book reports a UK experience, the problem of how to involve the public and patients in a meaningful way in decision-making is a common one for health services and governments in many modern countries, including Australia.
NICE was set up in 1999 as part of the National Health Service (NHS) specifically to help address the challenge of the fair allocation of health resources in England and Wales. While the establishment of NICE allowed potentially difficult political decisions to be shifted from government to a more neutral body, one that can openly declare that not all health treatments can be made available to everyone, it also imbued NICE with a controversial character as it needs to manage the tricky process of prioritisation for limited health resources.
The approach used in this book is to simply describe processes related to one strategy used to manage prioritisation – the use of patient, carer and public involvement to enable value judgements that reflect the society affected by the impact of the decisions taken by NICE. An important step has been the development of principles or ‘social values judgements’ using input from the Citizen's Council as a framework for decision-making throughout its work.
Although not explicitly structured, the book falls into three sections: a description of the procedures used by NICE to involve patients and the public; the experience of the Citizen's Council; and external perspectives of the involvement of the public in the uncertainties of health care planning. If more attention were given to developing these themes, the book would have achieved greater cohesion.
The eight chapters of the first section are devoted to articulating the NICE approach to patient, carer and public involvement. Four chapters, written by the relevant NICE program managers, describe the different approaches to patient and public involvement across each of the NICE program areas: clinical guidelines; health technology appraisals; public health; and interventional procedures. These chapters focus on outlining the processes used but provide little, if any, evaluative information. It is interesting to see how strategies differ across the program areas but I also wanted to know about the routine data collected for the processes used. It would have been useful to know which approach was most successful in engaging patients, whether there were differences in the information elicited, and what hadn't worked so well. The authors allude to a 2008 evaluation, but unfortunately no findings or insights from it are included in this volume. Examples of the influence of patient involvement are included but it is not clear how representative these are. Nevertheless the examples do highlight the potential impact of patient input and also demonstrate how assumptions can mislead good intentions, e.g. a committee assumed everyone undergoing kidney dialysis would prefer the convenience of home machines yet found some people didn't like them because it meant the illness overtook their lives.
The next section looks at the Citizen's Council, which NICE established in 2002. This was an experimental strategy for NICE; the story and its outcomes are told from different perspectives, both from inside and outside the organisation, and include a former Council member, who saw his biggest lesson as finding out that there are not right or wrong answers when it comes to social value judgements. The Citizens Council, made up of 30 ‘ordinary’ members of society, were sought through open advertisements in the media. More than 30,000 people made enquiries about the first Council, and nearly 4,500 applications were received, indicating a strong interest in some type of involvement. Advice from the Council is gathered through a deliberative process that aims to understand the reasoning behind the views people hold. The Council considers questions framed by the Board. These have covered a range of topics, such as age, confidential enquiries, patient safety and the nature of innovation.
The last section of the book includes discussions about the Citizen Council and its role in engaging the public in health care decision-making. This section takes a broader view; it includes observations about the feasibility and accountability of Citizen Councils, comparisons with other approaches in other settings and other sources of information available to NICE.
This book provides a useful account of the activities within NICE. It aims to inform, not inspire.