-Synthesis of part 3-
Professor Yves Léy, CEO of INSERM (the French National Institute for Health and Medical Research), and President of Aviesan (the French Life Sciences and Healthcare Alliance), presented the report « Genomic France 2025 » remitted in June 2016 to Prime Minister Manuel Valls. This plan consists of developping on the French territory genomas sequencing and allow France to consolidate its leading position in personalized research. « Our philosophy is to be close to the patient for the access to diagnosis and for an equal access to genetic diagnosis ».
The plan stands on a network all over the territory with 12 platforms of sequencing, a centralized data collector and a center that will provide standards from sample to analysis. The plan also takes into account the consequences of precision medicine, particularly on the consent, the storage and data security, the training for a quick data analysis, and the refund of medicines.
We have been shaken by Sophie Six, Emmie-Lisa’s mother, who died a few months ago with her touching testimony on the issues of precision medicine and particularly, the difficulties to access information on trials, to communicate with doctors and the emergency to take action quickly when relapsing.
«Parents cannot let the disease take away their child. As parents, we will remember how quick the disease evolved, and the urgency with which we have to take action each day we are given».
«It is urgent to perform genetic tumoral sequencings earlier for every child. It is urgent to accelerate research in pediatric oncology in order to optimize the treatments. It is urgent to prepare this transformation all together ».
To anticipate and manage the ongoing changes
To facilitate the access to clinical trials :
Researcher in Sociology, Sylvain Bresle at Gustave Roussy, through the study Egalican 2 on the equality to access trials during the early phase, shows us the importance of the selected physician.
« The origin of your doctor entirely explains the fact that you will be included in a trial or not ». A good coordination between different centers is also essential to have a good management of the patients and not to loose time. Follow those trials now will allow to anticipate some social problems that could occur in the future.
It is essential that doctors all over the terrotiry as well as families can quickly know about clinical trials, and that patients can access to them for a reasonable cost for the families. U-LINK project, recently led by BMS Laboratory, should answer to those problems.
Co-directed by Doctor Jean Michon, President of SFCE (French Society against Child and Adolescent Leukemia and Cancers), at Curie Institute, and by the UNAPECLE (Union of Parents Association of Children affected by Cancer or Leukemia), the U-LINK project’s missions are :
– To create a data basis with all information about current clinical trials, easily accessible to doctors and families all over France
– To organise private partnerships (SNCF, Air France, Accor…) to make transport and stay easier for patients.
« To learn that the treatment that could be given to your child is located at 800 kms makes things more complicated. But to know that the access is possible thanks to caring is something than can break down barriers. And it is where solidarity is very important and that we cannot fail» said Doctor Jean Michon.
To prepare doctors to the changes linked to precision medicine
Doctor Dominique Valteau-Couanet, member of the Scientific Council at SFCE (French Society against Child and Adolescent Leukemia and Cancers) to organise better the management of patients, to share the knowledge and information with the pediatric oncologist, to teach the best way to inform families about the trials and forward a suitable message.
Doctor Dominique Valteau-Couanet, member of the Scientific Council at SFCE (French Society against Child and Adolescent Leukemia and Cancers) to organise better the management of patients, to share the knowledge and information with the pediatric oncologist, to teach the best way to inform families about the trials and forward a suitable message.
The ELIOT project initialized by BMS and driven by Doctor Valteau Couanet and Patricia Blanc consists in studying the creation of an artificial intelligence engine WATSON which allows to analyse and read quickly the data and information and help the doctors with diagnostics.
To support families with change
Doctor Patrick Poirot, at Locomotive association (member of UNAPECLE), underlines the importance of a full trust relationship with the referring physician.
« The starting point is the initial referring doctor. That is where the contact will be, when the treatment will start, and also where the child and his family will come back after the treatments (…) What is important to maintain trust, is a good collaboration between the referring center and the state-of-the-art center that will welcome the child ».
To have someone specialized in the centers to inform and support families could create a climate of trust between family and the referring doctor. « The referring doctor must be trained to these new techniques, trained to transfer the right patient to the right dedicated center ».
Yves Lévy, CEO at INSERM and President at Aviesan : « there is a complete revolution in the way to practice medicine and the tools and problems are common to cancer and other diseases. We have to get together to make the regulations problems move forward, to prepare the training for the doctors and nurses, and tools ».
« From now on, between the persons in charge of the different agencies research-care like INCa, like INSERM, like ANRS, the question of how we can make public politics move forward taking into consideration our specificities ».
At the end of the 3rd part, the priorities of actions are :
– To follow the set up of U-LINK project : to create a data basis centralizing the clinical trials and make the access to those trials easier for families, supporting them with transport and stay costs.
– To work on the creation of the tool WATSON.
– To prepare changes in the management of patients (training of doctors, support to families..)
– With the support of INSERM, make public politics move forward by joining together with other pathologies.
