2024-08-23 08:24:50
Health communication consultant Damien Dubois is also the founder of the association Aider à aide, which supports patient associations and people who want to work with them. It’s a journey nourished by his experience as a patient. For Lavelle, he reviews the evolution of patient engagement in health systems: who they are today, their profile, their motivations, what their patterns of action are.
Comments collected by Renaud Degas and Géraldine Bouton
You have a dual role: health communicator and president of the association Aider à Aider. What has been your journey?
Damien Dubois: I was diagnosed with this disease when I was 15 years old. I want to help other patients by getting closer to the world of association. I also testified to my experience by creating “Jeunes Solidarités Cancer” (1998) and “Aider à Aider” (2014) with other teenagers and young people.
For a long time, I disconnected my professional life as a reporter from the trajectory of my patients. But I ended up doing a combination of both. I dabbled in communications, integrating my illness into my career while being careful not to let it become a flag. Today I position myself as facilitator who works for whom Co-construction and cooperation among different health stakeholdersespecially patient representatives.
Twenty years after the enactment of the law on patients’ rights and the quality of the health system, how do you see the evolution of patient participation in the health system?
DD: From the early 1990s, when several associations mobilized around AIDS, to the end of the same decade, when the Cancer Patient Profile Conference was convened, the process evolved rapidly. general health. As patients, we speak out for the first time. The entire context is conducive to large-scale associative dynamics. On the ground, there is a great need to inform and help patients understand their living situation…
Over time, these associations rethought their approach to broader action. Patients begin to think beyond pathology about the workings of the health systems that care for them. Institutions such as the High Authority for Health (HAS) or the National Cancer Institute (INCa) are gradually mobilizing associations to think about The spirit of co-constructionto different planning cancer especially. The idea that patients have a place in this work has taken hold.
What is the relationship like today between these committed patients, health professionals and institutions?
DD: There is recognition and listening. Initially, the patients involved were asked to tell their stories. Testimonies are very useful, especially in conveying awareness-raising messages. Today, some patients are able to use their experiences to provide food for thought. These archives have foundations and capabilities and have gained legitimacy from various ministries and agencies.
Implement recognized training courses e.g.patient university 2010, contributed to this shift. However, work remains to be done, especially for some doctors who remain concerned about the image of their suffering patients. Evolution may come from training. Patient trainers are already working at some universities to increase awareness among future medical professionals of all that committed patients can bring to the table.
What, precisely, are the relationships between patient associations and community medicine, particularly those involving primary care?
DD: The exchange is rich in content. For example, patients were included in discussions surrounding: Mobility and digital transformation. Furthermore, healthy democracy has suffered significant setbacks since the health crisis, with interest groups such as mobile patient. Born out of an informal exchange around continuity of care during the pandemic, it now brings together around twenty associations to jointly lead advocacy on lost opportunities. They had many discussions with primary health care professionals.
To give another example, the collective New Grenelle de la Santé Since its inception in 2023, it has connected patients and healthcare professionals working in cities and hospitals. Overall, healthcare professionals understand the value of working with patients. This can be done by holding Session 4 “Partnerships with Patient Care”, At the end of September, and before then, the Grenell Collective will organize a half-day “Towards a Healthy Civic Pact”.
What is the profile of participating patients today?
DD: Profiles and levels of commitment vary and have changed significantly with training, the rise of digital technology, and so on. Catherine Serisiand became an Internet pioneer with her Blog after breast cancernow a consultant, teaches the patient perspective. Overall, some patients want to know more about the disease, and some want action on the ground and training to listen. Some people want to take a more structured approach.
Others move into supporting various stakeholders, participating in institutional working groups, etc., training or building on their professional and personal careers. The platform” patients involved » Initiated by “Aider à Aider”, this diversity is reflected by highlighting the initiatives taken by patients. Among these testimonials, one patient who was asked to evaluate her application said she was ultimately hired as a patient partner with the company.
Beyond the institutional aspect, patients can take action using these tools. Let us also not forget those who represent users. therefore it is necessary Distinguish between patients who are experiencing illness and those who want to participate in the cause of healing.
What is the outlook for patients working in the health system?
DD: we must continue Educational work with health stakeholders and reflect on The structure of this commitment At the same time, avoid the trap of falling into the circle of patients due to differences in situation and level of consciousness. What tasks are rewarding? What training is required for what tasks? It is necessary to inquire about the location of the committed patient. Compared to hundreds of years of medical development, this development is only 30 years old!
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