HISTORY OF FRENCH CITIZEN CONSULTATION

In September 2015, the Minister of Health announces a "citizen and scientific enquiry" to evaluate organized breast cancer screening programme in France and appoints an independent steering committee to oversee it.

  • This committee brings together:
    -leading health professionals (oncology, general medicine, epidemiology, public health)
    -professionals in the social sciences (anthropology, law, economics, history of science and bioethics), all with no financial or academic interest in breast cancer screening.

This French inquiry is the third independent evaluation of breast cancer screening in Europe, following those done in Switzerland and the United Kingdom (1, 2). All of them emphasized the need for complete and balanced information, and all recognised over-diagnosis as a serious harm; two (the Swiss and the French evaluation) made a recommendation to stop screening as currently conducted.


The process is conducted as follows:

  • Examination of the review of evidence (by a technical committee of the French National Cancer Institute (INCa)),
  • The committee supervises "a civil dialogue", a concept inherited from the French Revolution of 1789 (round tables, working sessions…).

A website :
-provides information on the consultation
-invites the public to express its opinion.
Two consultations :
-a citizen consultation of a group of 27 women from different regions of France and different socio-economic groups
-a parallel consultation of a group of 19 health professionals with relevant professional experience, but with no link to breast cancer screening.
A final public meeting for :
-the presentation of the recommendations
-answering questions.

Conclusions

Two scenarios:

-Full cessation of organized breast cancer screening;
-Stop the organized breast cancer screening as it is currently being performed and fully reconstruct it

If the program should be continued, the main recommendations of the women citizens :
-Neutral, complete information for women, the public, doctors.
-Acknowledgement of the scientific controversy within the information given.
-Practitioner training for help women's decision-making.
-Research program on the natural history of breast cancer(s) and on the effectiveness of new therapies.
-Assessment of the program on the impact of screening on quality of life, mortality and costs.
-Cessation of screening for women at average risk under 50 years of age.
-Reflexion on a screening based on the level of risk.

-These conclusions are very different from those of other juries (US Task Force, American Cancer Society, International Agency for Research on Cancer) which concluded that the benefits outweigh the drawbacks and continue to recommend the organized screening.
-One explanation could be the conflicts of interest of some juries, which were deliberately avoided in the three European enquiries.

COUNTER-ATTACKS ARE LAUNCHED….

The president of INCa, Norbert Ifrah speaks on a Health television program on 4 October 2016.
The letter from the President of INCa to the Health Minister is meant to summarize the report.
In this letter, Norbert Ifrah violently denigrates the first scenario, which he rejects outright.
-He states that "… by the affirmation of the report's authors… it would be very risky, generating inequities and losses of chance".
-But no trace of these remarks can be found in the consultation report.


The new French Public Health Agency (Agence Santé Publique France) publishes a report written in collaboration with INCa highlighting the "quality" of the organized screening program.

(https://formindep.fr/cancer-du-sein-la-concertation-confisquee/)


The INCa president's preference goes to the second scenario, which he reinterprets, reducing it to a simple adjustment of current practices: "proposals for readjustments….. that are in line with the rationale of the 2014-2019 Cancer Plan".

CONFISCATION FOR THE WOMEN OF THEIR CONSULTATION

The Minister congratulates herself on the smooth running of Pink October in the media and expresses, in her press release, "The best chance of curing breast cancer is screening. However, still too few women used the organized screening. »


The 12-point action plan announced in the opening statement (April 2017) : "Breast cancer screening is therefore a major public health issue; to reduce mortality and morbidity related to breast cancer, but also to improve the quality of healthcare for those concerned. »

THE MINISTER'S MAIN PROPOSALS :


-creation of information tools for women for decision-making with the doctor.
-new medical consultation at the age of 50 to discuss options for cancer screening and prevention.
-information booklet accompanying invitations to screening and an online decision support.
-training to help doctors communicate about the risk/benefit balance and the limitations of screening.
-improving the technical quality of the program.
-establish a research program alongside the screening program.


The plan does not detail how these measures will be evaluated.

In reality

A downloadable booklet and a website created by the INCa, which are incomplete; this institute, strongly criticized by women citizens for its inability to provide good information, was entrusted with the revision of the screening.

Here are the contentious points:
-Underestimation of over-diagnosis.
-Over-treatment not mentioned.
-99% survival claimed.
-No visual support with real data.
-The effect on mastectomies not addressed.
A call for projects is launched among professionals to set up tools enabling them to inform women. This is in progress.
Screening remains in the ROSP (remuneration of doctors based on public health objectives).

Conflicts of interest :


Appointment of Ms. A.Buzin, former leader of the Inca, with the new Macron government, in May 2018.

All in all : a lot of movement, so that nothing changes.

But it is nevertheless going to change….

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Cancer Rose is a French non-profit organization of health care professionals. Cancer Rose performs its activity without advertising, conflict of interest, subsidies. Thank you to support our activity on HelloAsso.