Patients at the heart of health democracy: the Cancer Contribution model

Points de vue | 21 Jan 2013

Point of view of Giovanna MARSICO, head of the Cancer Campus patient resource centre and website

In France, health democracy emerged at the start of the 1990s with the mobilization of AIDS organizations. It was structured with conventions for patients organized by the "Ligue contre le cancer" in December 1998 and continues with the Conférences Régionales (C.R.S.A.) and the Conférence Nationale de Santé.

The movement is aimed at increasing the involvement of patient representatives in decisions regarding the healthcare system. It strengthens patients’ rights and naturally shifts the debate on healthcare away from environments reserved solely for experts.

In the meantime, several strides forward have been made in the legislative and political sphere, firstly with the establishment of the Law n° 2002-303 of 4 March 2002 relating to the rights of patients and the quality of the healthcare system (also known as the "Kouchner Law").

Ten years after the Kouchner Law, health democracy is ensured through the implementation of a representative process: approved organizations are involved in the governance of almost all authorities responsible for healthcare establishments and institutions. They are also consulted in the drawing up, implementation and evaluation of regional healthcare projects and national public health programmes.

However, can we really say that health democracy has reached a successful conclusion? Can we say that patients are genuinely part of the participatory democracy process?

In our opinion, two factors need to be highlighted : 
  • Less than 20% of patients have any contact with an association during their course of treatment. For most of them, cancer is either experienced as an individual or as a family, or is an experience shared outside of the organizations, for example in collaborative web spaces and on social networks;
  •  The development in IT and communication technology is significantly changing the roles of the various stakeholders. Web 2.0, in particular, allows Internet users to be more than just receivers of unidirectional and institutional information, enabling then to create their own content, discuss it and evaluate content provided by others.
The combination of elements such as access to information via the web, lengthy times suffering from an illness, major changes to patients’ lives, and interaction with peers over social networks, mean that patients can become informed discussion partners if they want to be. Their expertise is not limited to the emotional or psychosocial aspects of their illness – it is also rich in medical knowledge which is fully engrained into their life and healthcare treatment.

As a consequence, the doctor-patient relationship is heavily affected. Patients concerned demand to be informed properly about the choice of treatments available, want to be involved in the decisions concerning their treatment, help analyze the proposed procedures, and actually negotiate with the medical team in order to align their care pathway as closely as possible with their requirements in life.

As well as people’s desire to be acknowledged as a key player in their own care pathway, patients are very keen to play an active role in organizing and evaluating the healthcare system.

We are seeing patients becoming increasingly informed, involved and capable of participating in the decision-making process regarding their own care pathway. Furthermore, the challenges associated with the healthcare system no longer fall within the exclusive domain of professional experts, politicians or representatives.

Individuals’ desire to be involved is reflected in a macroscopic and much more societal vision: as users, taxpayers and potential patients, people require far greater transparency from institutions and want to be involved in the choices and decisions that affect or will affect their future lives.

Recent healthcare events have clearly shown that a wider and more structured public debate could help to prevent widespread crises of confidence caused by accidents like that of the H1N1 vaccination or the Médiator and PIP scandals.

In addition, crisis situations aside, public reflection could drive decisions to improve people’s understanding of the challenges of healthcare policy, such as those surrounding organized screening for breast cancer, and those regarding topics such as social inequality, the medical desertification of rural areas, and excess fees.

Based on the idea of acknowledging patients’ expertise and people’s interest in being involved in decisions surrounding healthcare challenges, the Cancer Campus’ patient resource centre has, in partnership with the National League Against Cancer, created the collaborative platform The aim here is to translate all the experiential knowledge that patients have built up over the years into practice.

Through debates on the sensitive issues surrounding the disease, Cancer Contribution validates the knowledge of non-professional experts, creates a space for discussions amongst cancer stakeholders, and analyzes and formalizes the community’s contributions in order to produce guidelines for practices and political proposals to be integrated into a white paper expected by the end of 2013.

Cancer Contribution sees itself as a catalyst for bringing together different perspectives on the disease and the impacts that it has on individuals and society in general.