European Network of (ex-)Users and Survivors of Psychiatry - Information

The European Public Health Alliance about the independence of patients' organisations

Ensuring the independence of patients' organisations, the European Public Health Alliance writes, that the value placed upon the participation of patients' organisations flows from their ability to reflect, accurately and fairly, the views of the patients they represent. In order to do this, they need to be independent from other health stakeholders. As EPHA writes further on, one area of particular concern is the relationship between patients' organisations and the pharmaceutical industry. While the views of patients and pharmaceutical companies can overlap on different issues, they are not identical. While it is important that these commonalties are pursued when they exist, it is also important that patients' organisations maintain the capacity and independence to express views which are different from industry and which may be critical of industry. Some patients' organisations refuse to accept funding from pharmaceutical companies on the grounds that this is a conflict of interest. Many patients' organisations do accept funding from pharmaceutical companies.

Approaches to minimising conflict of interest for patients' organisations which receive pharmaceutical funding include:

  • establishing limits on industry sponsorship as a proportion of total income; and

  • clearly articulating the role of the sponsoring body in relation to sponsored projects and the organisation generally in policy documents.

Funding from pharmaceutical companies is not limited to direct sponsorship. In some cases, a formally constituted not-for-profit agency acts as a conduit between the pharmaceutical company and patients' organisations.

See the whole EPHA-paper (from 2001).