- Andrew Herxheimer, emeritus fellow, UK Cochrane Centre (firstname.lastname@example.org)1
- 1 9 Park Crescent, London N3 2NL
That different groups of stakeholders in an activity should work together constructively is widely regarded as an ideal. This has brought pharmaceutical companies and patients' organisations together and led them to explore areas of shared interest. Various forms of collaboration between these unequal partners—one usually rich, the other poor—have developed over the years, and have raised serious questions.1 2 This article explores the position, mainly in the United Kingdom, which has hundreds of self help groups and support organisations.3 The table lists some of the most prominent. Similar problems exist in other countries where patients' organisations have become important, notably the United States.
Needs and wishes
Like other commercial enterprises, the major companies focus on making a profit, and this determines their priorities. They want to sell their products in large quantities and expand their markets, far into the future. With new drugs this must happen fast, because research is expensive and the costs must be recovered quickly before competing products arrive.
Patients' organisations want adequate care for the people they speak for, usually with specific diseases or health problems—though often they do not represent them. They and the individuals they try to represent want to be listened to, and as far as possible to be treated as equal partners by the health professions and the institutions of the health service.
Box 1 lists the main needs or wishes of each party. The discussions and negotiations between them must of course consider the costs, potential disadvantages,
Box 1: Short term [S], medium term [M], and long term [L] wishes
A patients' organisation needs help with:
[S] Project …