Schwerpunkt
Shared decision making in the physician-patient encounter in France: a general overview in 2011Partizipative Entscheidungsfindung im Rahmen der Arzt-Patient-Kommunikation in Frankreich: Allgemeiner Überblick über das Jahr 2011

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Summary

What about policy regarding SDM?

There is a social demand in France for more healthcare user information and greater patient participation in the decision making process, as reflected by the law of March 4th 2002 pertaining to patients’ rights and the quality of the healthcare system known as the Law on Democracy in healthcare.

What about tools – decision support for patients?

At the micro level, some research projects are being developed, some of them using decision aids. Preliminary results show that patients want to be informed but that the concept of shared decision making needs to be analysed and refined from both the patients’ and the physicians’ points of views.

What about professional interest and implementation?

However, the relationship between physicians/healthcare professionals and patients/healthcare users is very complex and progress in this field takes time. Only ten years after enactment of the Law on Democracy in healthcare, it might be premature to try and determine the state of the art of shared medical decision making at the macro and meso levels in France.

What does the future look like?

There is room in France for further studies on shared decision making in the medical encounter. Researchers, decision makers, healthcare users and healthcare professionals need a place to meet and exchange. An observatory dedicated to shared decision making will be launched in the coming months, both at the national level and in collaboration with several other French-speaking areas like Switzerland and the province of Quebec.

Zusammenfassung

Wie steht es mit gesetzlichen Regelungen zur PEF?

In Frankreich besteht eine gesellschaftliche Nachfrage nach mehr gesundheitsbezogenen Verbraucherinformationen und einer stärkeren Beteiligung der Patienten am Entscheidungsfindungsprozess, die sich in dem Gesetz über die „Rechte der Kranken und die Qualität des Gesundheitssystems“ vom 4. März 2002 – auch als „Gesetz zur Demokratie im Gesundheitswesen“ bekannt – widerspiegeln.

Wie steht es mit PEF-Instrumenten – Entscheidungshilfen für Patienten?

Auf der Mikroebene laufen verschiedene Forschungsprojekte, von denen einige Entscheidungshilfen verwenden. Vorläufige Ergebnisse zeigen, dass die Patienten aufgeklärt werden möchten, dass aber das Konzept der Partizipativen Entscheidungsfindung sowohl aus der Perspektive der Patienten als auch der Ärzte noch besser analysiert und justiert werden muss.

Wie steht es mit dem Interesse der Profession und der Implementierung?

Die Beziehung zwischen Ärzten/Beschäftigten im Gesundheitswesen und Patienten/Nutzern des Gesundheitssystems ist äußerst komplex, und Fortschritte in diesem Bereich brauchen ihre Zeit. Nur zehn Jahre nach Inkrafttreten des „Gesetzes zur Demokratie im Gesundheitswesen“ sind verlässliche Aussagen zum State-of-the-Art der Partizipativen Entscheidungsfindung auf der Makro- und Mesoebene in Frankreich noch verfrüht.

Wie sieht die Zukunft aus?

Es besteht Bedarf für weitere Studien zur Partizipativen Entscheidungsfindung im Rahmen der Arzt-Patient-Begegnung in Frankreich. Wissenschaftler, Entscheidungsträger, die Nutzer des Gesundheitssystems wie auch die Beschäftigten im Gesundheitswesen benötigen Orte der Begegnung und des Austauschs. In den kommenden Monaten soll sowohl auf nationaler Ebene als auch in Zusammenarbeit mit mehreren anderen französischsprachigen Regionen wie der Schweiz und der kanadischen Provinz Quebec eine Monitoringstelle eingerichtet werden, in deren Zentrum die Entwicklung der Partizipativen Entscheidungsfindung steht.

Introduction

Our paper, published in 2007 [1], described the bases, the status and the development of shared decision making in the physician-patient encounter in France. This is an updated overview of the situation in our country. First, we describe the situation at the macro level (legal and administrative bases), at the meso level (national health institutions) and finally at the micro level (research studies).

Patients’ demand for information and participation in medical decisions was first introduced in the eighties by patients’ associations, principally AIDS associations [2], [3], and then it was revived in the nineties by cancer patients’ associations [4]. These movements are commonly associated with the rise of what has been called in France “Democracy in healthcare” [5]. This concept originates from the growing awareness of the civil society. The transformation of the patient into an actor of his own healthcare parallels the transformation of the citizen into a stakeholder in healthcare policy making. “Democracy in healthcare” was officially established in 2002 with the adoption of the bill on patients’ rights and the quality of the healthcare system, known as the Law of March 4th 2002. This law notably stipulates that “Any individual has the right to be informed on his health status. This information covers the different investigations, treatments or preventive actions proposed, their utility, possible emergency and consequences, the severe or frequent risks normally predictable, the possible other options and the possible consequences for the patient in case of refusal” [6]. It also stipulates that “All patients are entitled to access information on their own health and to take their own decisions with the help of and in agreement with their physician” [6].

Democracy in healthcare” establishes a legal framework which empowers the transition from a paternalistic model to a shared decision making model. The relationship between the physician/healthcare professional and the patient/healthcare user is seen more as a dialogue between at least two expertises and the exchange of information and knowledge is essential. This is the general socio-political context in which the French healthcare system has evolved over the past ten years and in which some French institutions, principally the National Health Authority, play an important role at the meso level.

The methodological handbook entitled “How to produce an information brochure for patients and users of the healthcare system” (a methodology guide and quick reference guide) first published in 2005 by the National Health Authority (NHA) was updated in 2008 and recently translated into English [7]. This handbook describes the steps involved in the development of brochures designed to provide patients, their relatives and healthcare users with easy-to-understand information based on valid sources. The developers of the guideline explicitly underline that even healthcare professionals may find such brochure useful as a reference material since they have the legal obligation to provide information to their patients. The target audiences are learned societies and professional organisations who wish to provide patients and users with adapted information brochures based on available medical guidelines as an adjunct to verbal information. To our knowledge this guide is the sole official document developed in France on the topic.

More generally, the NHA is also committed to the quality of the medical information provided to healthcare professionals and is notably in charge of the Health On the Net label in partnership with the Switzerland Foundation.

As mentioned in 2007 [1], providing information to patients and more generally to healthcare users is by definition one of the missions of the National Institute for Education in Health. The Institute conducts prevention and health education programs in the wider context of national public health policies. Through notably information, but also communication, teaching aids and research, it aims to help healthcare users control or even improve their heath status. The Institute consequently conducts programs to promote high quality patient information. For instance, educational tools have been developed for patients with chronic diseases like diabetes, or for the prevention of addictions like alcoholism or smoking. A methodology guide and recommendations were published in 2007 [8] to help promoters of therapeutic patient education programs develop quality information.

The last institution involved at the meso level is the National Health Insurance Fund (Caisse Nationale d’Assurance Maladie des Travailleurs Salariés, CNAMTS) which provides insurance coverage to 85% of the French population (over 50 million people). The CNAMTS has developed with BUPA a pilot phone coaching program for patients with diabetes. The research is still ongoing but the first results tend to show that patients are satisfied with the services offered [9].

As stated in 2007 [1], from this legal and institutional context one could speculate that there is a strong movement in France in favour of patient information and participation to medical decisions. However, again as stated in 2007, the reality is much different. To our knowledge, only few published studies have explored patients’ information needs and the information provided by physicians even if the law of March 4th 2002 requires physicians to provide information to their patients [10], [11]. Along the same line, only few teams have analyzed patients’ participation in medical decision making and even less have developed decision aids [1], [12], [13].

In 2011, the general situation remains unchanged. Although the general context is strongly in favour of “Democracy in healthcare” which promotes shared decision making between the physician/healthcare professional and the patient/healthcare user, far too few studies have been or are currently being conducted in France on the topic. In the absence of recent data, it is thus difficult to determine the state of the art. Some recent studies have nonetheless been developed at the micro level, as described below.

Since 2007 some new research studies have been carried out in cancer (to our knowledge, no other area has been explored) by social scientists (psychologists, sociologists, anthropologists, health economists) and clinicians (medical oncologists and surgeons) collaborating in multidisciplinary working groups. They focused on:

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    Cancer patients’ information seeking behaviours [10] and participation in treatment decision making [13] were analysed through a national survey conducted by the Ministry of Health and the INSERM (National Institute for Health and Medical Research) in partnership with the French National Cancer Institute (INCa) and the National League Against Cancer.

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    The process of shared decision making has been analyzed from the views, perceptions and representations of early-stage breast cancer patients across the whole breast cancer healthcare pathway. The study aimed to identify and model the reactions and coping abilities of patients in the medical decision (the effects it produced) during the course of care and throughout the different steps of therapeutic management and also to evaluate the subjective aspects, functions and impact of the information provided in the context of a shared decision making process. This project was funded by the National League Against Cancer. A preliminary report has been published [14] and final results will be published in international journals in 2011.

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    The different ways of perceiving the cancer patient's role in decision making during the physician-patient encounter have also been analyzed. One study analysed the decision making process for adjuvant chemotherapy in routine practice and the difficulties and needs of physicians with respect to the use of decision aids, and aimed to promote the wider use of decision aids in routine clinical practice in France. This study, funded by the French National Cancer Institute (INCa), was conducted in two regions: South-West and Rhône-Alps. A general presentation of the study has been published in a national journal dedicated to cancer [15] and results will be published in international journals. The other study aimed to describe and understand physician-patient encounters in the context of prescribing oral chemotherapy. This project was conducted in the Rhône-Alps region and funded by the National League Against Cancer.

Section snippets

Conclusion

As stated in 2007 [1], there is a social demand in France for more patient and healthcare user information and greater participation to the medical decision making process, as reflected by the law of March 4th 2002. However, the relations between physicians, healthcare professionals and patients or healthcare users are very complex and any evolution in this field takes time. Only ten years after enactment of the Law on Democracy in healthcare, it might be premature to try and determine the

Acknowledgments/Sources of fundings

The authors would like to thank La Ligue Nationale Contre le Cancer (National League Against Cancer), La Fondation de France and the Institut National du Cancer (French National Cancer Institute) for financial support.

References (15)

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