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Patients as agents of improved healthcare quality

From yesterday's "patently incompetent" user of the healthcare system to the knowledgeable patient who is an agent for better health, patients are taking the initiative to participate actively in healthcare.

Starting in the 1980s, patients, working through patients' associations, have transformed their role into that of full-fledged actors in the healthcare system. Their knowledge and their expertise have challenged healthcare professionals in their practices, reinforcing the decline of the paternalistic model of healthcare in favour of an evolution towards a model of healthcare and of life centred more on patients' needs.

Some patients have decided to put their experience with their own illness to use in order to provide support to other patients who have the same illness. They become "expert patients". They participate in therapeutic education programmes, they help train healthcare professionals. They can help to define treatment goals, by taking patients' expectations into account. The future will hold greater recognition for "expert patients", trained and compensated, in hospitals and in the community. It is essential that they maintain their independence and that they not be tied to any interests other than those of patients.

Since 2003, the French group Ciane (Collectif interassociatif autour de la naissance), made up of users' groups, has been undertaking independent, transparent actions to improve the quality of perinatal care in France. Ciane calls upon professionals to come together to rethink certain practices based on the clinical evidence. For example, Ciane would like to see a decrease in the number of episiotomies, which are performed too routinely in France.

The patients' group Amalyste, which brings together victims of very serious adverse drug effects such as Lyell's Syndrome, defends victims, helps to promote awareness and offers analysis for the general public on the subject of drug harms, and advocates for the payment of damages to victims of serious adverse drug effects.  

©Prescrire 1 August 2014

Source: "Préparer l'avenir pour mieux soigner" Rev Prescrire 2014 ; 34 (370).
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