Patient organizations and public health

Abstract

In a stimulating paper in the British Medical Journal ,1 Show and Baker described the turmoil produced 15 years ago in the medical profession by what has since then been coined the ‘expert patient’; a patient whose specific knowledge about his disease challenges the power of the medical profession to decide alone the nature and the way his care should be organized. Several alternative models of the clinical encounter have emerged, focusing on the ability of a patient to cope actively with his disease, and emphasizing the ‘patient empowerment’ which is facilitated by the specific knowledge which the patient draws from his experience.2 A ‘patient collective identity’ sometimes emerges from the experiences shared between members of the same disease group. Patient organizations (POs) have been a strong factor in shaping these identities. As a recent special issue of Social Science and Medicine shows, some of these POs have got involved in activities (e.g. medical research or health planning) previously considered a professional prerogative.3 The community of public health researchers has not yet fully appreciated the impact these developments may have on their activities. While a recent viewpoint in this Journal seems to reflect a certain awareness of this ‘blind spot’, when it acknowledges the fact that ‘a new partnership to involve the whole society in reorienting health policies’ is necessary,4 POs are not mentioned as potential stakeholders. Sharing patients’ experiences with a specific disease has been the basis of the action of many POs. Until the 1980s, POs were frequently dominated by professionals in their boards or scientific councils, so they lacked the capacity to develop specific knowledge and shape their actions autonomously. Two sets of closely related factors can be considered as major drivers towards a better institutional recognition and autonomy. The first, fuelled by …