Health democracy and the place of patients: major challenges for transforming the health system
The French Federation of Private Hospitals (FHP) conducted two surveys: among the population of France and among private health care institutions.
The French have a positive overall opinion of their healthcare system (73%), but they deplore the excessive complexity of its operation (45%) and the administrative procedures involved (47%). They would like to see healthcare paths that are easier to understand (43%) and more reliable information made available to all (44%): this is what emerges from a study conducted by the Fédération de l’Hospitalisation Privée and the Viavoice opinion institute in September 2022. Understanding, simplification, transparency and fluidity therefore appear to be the keys to a good health system.
We asked the French about their relationship with healthcare democracy: 86% believe that for the future of the system, this healthcare democracy – understood as allowing patients to be better represented within the system, with their voice better taken into account – is important or even essential. More than half consider that patient-citizens were not sufficiently involved in decisions related to the pandemic. 82% of French people are in favour of patient representation in all decision-making bodies in the health sector, both at national and local level.
This desire for greater participation is counterbalanced by a strong lack of knowledge of the mechanisms and representative bodies of health democracy – only 19% of French people are familiar with this concept, even though individual patients’ rights are better known than collective rights.
40% of the French consider that they are not really involved in their own health and health care, and 73% would like to be more involved. 72% call for better promotion of the recognition of the patient’s experience.
At the same time, the FHP conducted a survey over the summer among 1,000 private hospitals and clinics on the dynamics of health democracy within them. Beyond the obligations to which they are subject, 68% have defined a dedicated policy in favour of patient participation within their establishment, and 71% affirm that the challenges of health democracy are an integral part of their establishment’s overall strategy.
For 83% of the institutions, the contribution of the Patients’ Commission to the institution is important, and 88% consider it to be an actor in improving the quality of care through its recommendations. In 81% of cases, the users’ representatives are associated with other decision-making bodies within the institution. On the downside, one out of two establishments said that they sometimes or often have difficulty finding user representatives; they sometimes point to a lack of time and resources to fully address these issues.
For 81% of FHP members, the role of health democracy players will have to be taken more into consideration if a new health crisis occurs. One out of two establishments has a proactive approach to training healthcare workers on patient rights or the patient experience.
Although all the institutions carry out satisfaction questionnaires, the national system for measuring patient satisfaction, “e-Satis”, is viewed rather critically: 72% of respondents consider it to be too long, too complex for patients to understand and unsuitable for certain groups. Among the avenues for improvement envisaged: a shorter and more “visual” questionnaire, clearer wording, and a shorter time between treatment and the questionnaire.
59% of hospitals have taken steps to measure the patient experience, and 35% of hospitals have appointed a person to deal with this issue. 58% said that they involve patients in improving the quality/relevance of care/risk management.
Finally, one out of two hospitals and clinics is developing relationships with patient associations, patient partners or carers; 53% are organising events dedicated to health democracy; and 58% are carrying out actions on environmental or societal issues.
88% of hospitals and private clinics think that a living health democracy and full patient participation is important, even essential, for the proper functioning of a health establishment; 95%, for improving the quality, safety and relevance of care and pathways; and 87% for the transformation of the health system.
These two surveys underline the importance of these issues for the French people, and the importance of the involvement of health actors in this fundamental dynamic for our health system, at a time when the National Council for the Refoundation of Health calls for more participative approaches.
On the basis of these lessons, the FHP will continue the reflections of its working group dedicated to the challenges of health democracy, and issue operational proposals to support its members on the subject.