Patient Power: The Politics of Patients’ Associations in Britain and America

Abstract

Angela Hayes, International Alliance of Patients' Organizations: This book reports on a 2-year research study involving 500 patients' associations. The study seeks to assess 'the political economy and politicaleffectiveness of patients' associations rather than to evaluate in any detail their specific records of service provision to members and supporters'. The book is part of a series aiming 'to contribute to debate about the future of health services through an analysis of major issues in health policy'. It provides the first comparative study of patients' associations focusing on political power and influence and is seen as 'important reading for scholars, students and professionals and in particular, for those involved in running patients' organisations'. Because patients associations, for the most part, derive from philanthropic philosophies and exist in environments of intense human need, both practical and emotional, the concept of separating the heart from the body by dissecting out services and activities seemed totally alien and, at first, even threatening. When viewed in the context of the sheer practicality of preparation and the abundance of information produced, it emerges as not only a reasonable approach but also a necessary one if patients' associations are to address seriously the new opportunities and challenges presented by their growing status of political legitimacy; a status that has been fought hard for and that brings with it additional responsibilities, resource pressures, culture changes and last but not least, training needs. This is a timely piece of work when patients' associations, whose members are said to represent 2% of the population, are once more poised on the threshold of change. The value of the focus on political effectiveness gives patients' associations a rare opportunity to see themselves as others do and to gain from this experience. The book is well structured and stimulating. It is in four parts and offers 10 chapters, each providing a summary of conclusions. This allows for different levels of reading, the quick skim or the in-depth approach. The latter provides a mass of thought-provoking information, and the former provides conclusions, a good proportion of which are uncomfortable or fascinating enough to send the reader scurrying back to find the 'evidence'. Part I is devoted to methodology and findings and provides a context of previous related work. It also outlines the consideration given to key elements in preparation for the study, e.g. the definition of a patients' association as primarily patient led. The basic research relies upon a questionnaire survey and interviews undertaken in 1997/98, in tandem with a literature search. This latter was largely written and provided by the patients' associations. It was disappointing, considering that the questionnaire generated an 80% response, that it was not reproduced. A view of the actual questions asked in the questionnaire and during the interviews would have given more insight to some of the outcomes. Apparently six questions were asked covering organizational structure, finances and activities. Associations participating responded well to the option to send materials rather than to fill out questionnaires. Part II provides a national overview of patients' associations, their growth in numbers, and a cross-section of organizational matters. It also highlights the dangers of 'professional colonization' - the need to get the balance right between working with and working for other key health sector stakeholders. Four and a half pages are devoted to examples of 'turfism' - competitiveness and failure to communicate or work together between associations with similar aims and activities - a demonstration of exclusivity rather than inclusivity. Part III compares the two conurbations, St Louis (USA) and Greater Manchester (UK). The findings bear out that their environment shapes patients' associations. Some distinctions identified include paid workers vs volunteers, and the relationship with the business sector. The groups studied were local 'chapters' of national associations. Their commonalities were listed as: •the enormous variety between branches; •national associations seeking to increase local activity levels; and •the need to enhance national support systems to underpin local voluntary efforts. Whether paid or voluntary, people need motivation, training and support for optimum achievement. Patients' association readers will recognize the picture emerging in Part III of the tensions between national associations and their local groups or chapters. Other readers may not necessarily appreciate that some of the instability of local groups referred to is associated with their very nature. The rich contribution of experience and the special dimension of understanding from people with a long-term illness which drives them to help others, is also associated with the ups and downs in health which affect their lives and their group. Finally, the sections of the book dealing with political resources of patients' associations, largely in Chapters two and ten, make interesting and practical reading, especially for those who have yet to be inspired. The outcomes of the survey are ambivalent about the capacity of patients' associations to become the new 'challengers' of health-care systems. One definite is the view expressed that patients' associations are undoubtedly political, the citing of evidence for this in the UK being an example of constitutional aims and objectives which are clearly derived from the Charity Commission model. A useful definition of 'politics' is 'the process by which society's beliefs and values are converted into public policies'. In looking for political activity and outcomes at both local and national levels, the researchers found that 'the overall picture is one of failure to work together to increase their ability to influence policy makers in both countries'. The issues for patients' associations are embedded in the reference to 'the considerable quantity of latent political resources which they either possess naturally or have chosen not to effectively acquire and mobilize'. The growth in national, and regional, e.g. politically successful pan-European umbrella alliances, is an indicator that patients' associations mean business and want to work together despite an environment that forces them into competition over funding.