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

by Wood

• ISBN13: 9780335203673
• ISBN10: 0335203671
• Edition: 1st
• Format: Paperback
• Copyright: 2000-05-01
• Publisher: Open University Press

Summary

There is a rapidly growing number of patients' associations relating to a specific medical condition or illness (such as multiple sclerosis or motor neurone disease) but they have received little academic attention. Bruce Wood has surveyed over 200 of these associations in each of the USA and the UK. They have been marginalized in accounts of health policy and services and yet collectively they are 'big business'. They perceive themselves as being non-political support groups but they actually participate in much activity that is political. Patient Power? asks: * are these economically efficient and politically effective bodies? * is the US 'business' or the UK 'volunteer' model more successful? * are they truly independent organizations or have they been 'colonized' by the big vested interests in health? * are they a signal of a more assertive patient or consumer? * do they actually influence what health care people receive? This is a ground-breaking study in health policy and management, and will be important reading for scholars, students and professionals and, in particular, for those involved in running patient organizations.

Author Biography

Bruce Wood has been in the Department of Government at Manchester University since 1968, and is currently Dean of the Faculty of Economic and Social Studies. His previous books have been on the 1974 reforms of local government, on public policy-working in Britain, and on the regulation of doctors in the UK, USA and Germany. He chaired a health authority from 1989-1996 and serves on the board of his local hospice.

Table of Contents

Series editor's introduction	xi
Preface	xiii
Part I: Methodology and findings	1	(32)
Why study patients' association politics?	3	(16)
Why this study?	3	(1)
The literature on patients' associations	4	(5)
The choice of groups and localities	9	(1)
Why compare cross-nationally?	10	(1)
Political implications of the growth of associations	11	(1)
How effective are patients' associations?	12	(5)
Conclusions	17	(2)
Approach, methods and sources	19	(14)
Comparative evidence: problems and opportunities	19	(2)
Definitions: which associations to include?	21	(3)
Key sources: national and local	24	(4)
The framework of influence: political resources	28	(4)
Conclusions	32	(1)
Part II: The national level	33	(82)
Exploding numbers	35	(16)
Rapid growth	35	(5)
One illness, one association?	40	(3)
Chronic and acute diseases	43	(3)
Business and social characteristics	46	(4)
Conclusions	50	(1)
Activities and finances	51	(18)
Membership levels	51	(5)
Aims and activities	56	(4)
Staffing	60	(2)
Finances	62	(6)
Conclusions	68	(1)
The political economy of patients' associations: efficiency and effectiveness	69	(23)
Probity: financial irregularities	70	(2)
Financial efficiency: high-cost charities	72	(6)
In whose interests? Autonomy and professional colonization	78	(8)
Excessive autonomy: turfism?	86	(4)
Conclusions	90	(2)
The political effectiveness of patients' associations	92	(23)
Political resources	93	(4)
Influencing individual professionals: the micro level	97	(3)
Influencing institutions: the intermediate level	100	(5)
Macropolitics: political campaigning at the national level	105	(4)
Collaborative politics	109	(4)
Conclusions	113	(2)
Part III: Comparing conurbations	115	(54)
The organizational context	117	(13)
Two conurbations: the basis of comparison	117	(2)
Branches and chapters: parallel underactivity	119	(4)
Salaries and volunteerism: contrasting worlds	123	(2)
Boards and committees: strengths and weaknesses	125	(3)
Conclusions	128	(2)
St Louis -- local strength?	130	(19)
Structure and autonomy	131	(3)
Chapter size	134	(2)
Services and activities	136	(5)
Liaison and collaboration	141	(5)
Conclusions	146	(3)
Greater Manchester -- local weakness?	149	(20)
Structure and autonomy	151	(3)
Branch size	154	(4)
Services and activities	158	(4)
Liaison and collaboration	162	(2)
The St Louis all-volunteer chapters	164	(1)
Conclusions	165	(4)
Part IV: Conclusions	169	(23)
Conclusions -- patients' associations, politics, states and democracy	171	(21)
Now you see them, now you don't	171	(1)
Associations as emerging `challengers'?	172	(4)
Institutional issues	176	(3)
Patients' associations and the state	179	(3)
Associations as contributors to the democratic policy?	182	(5)
Designing `effectiveness indicators'	187	(5)
References	192	(3)
Index of associations	195	(5)
Subject index	200