Final report of the citizen consultation

15 Dec 2016

(Report of the Steering Committee)

In 2015, the Minister of Health has initiated a citizen consultation on breast cancer screening, with the creation of a website allowing everyone to express their opinions on screening, which is the subject of scientific controversy around the world.
Dr. Cécile Bour participated in two round tables for the Cancer Rose collective, one with citizens and the other with health professionals, which consisted of a 20-minute presentation followed by a half-hour debate.

The steering committee published its conclusions in October 2016


You will find them starting on page 128
(Role of Cancer Rose, page 72).


We list some of the comments before detailing the conclusions.


- Page 5
The committee raises the dysfunctions in the organization of screening: confusion about primary prevention, screening and early diagnosis, lack of information about risks and uncertainties in the letter sent to women, misleading and outrageous marketing and promotion.


- Page 38
We note that the committee raised the paradox of performance-based remuneration for physicians based on health objectives, with the objective that 80% of patients aged 50 to 74 years old should have screening exams, even though this is not a mandatory procedure. However, we note that this problem posed by ROSP is not subsequently included in the conclusions.


- Page 41-47
The committee takes up the characteristics of setting up a screening system.
Low cost: whether the cost is low for the individual, it is not low for the society.
This is published on page 46/47, it’s evaluated at 180 million in 2008.
Low variability between mammography readers (radiologists): low or not, if present, it has a major impact on the patient's future.
Reproducibility of the reading is not guaranteed.
Mammography has neither sensitivity nor specificity.
Regarding effectiveness: the benefit must be identifiable, this is where the controversy resides.

-Page 76
Analysis of the situation by the committee :

1-The natural history of cancer needs to be rethought in order to differentiate the types of cancers and their possible evolution.

2-Avoid confusion between prevention and screening

3-Saying that one in eight women will develop breast cancer is a misleading presentation, since this risk is a cumulative risk for all ages, calculated on a hypothetical population based on the risks observed in 2012. However, this risk should be considered by age group. With a follow-up of 20 years, for a 40-year-old woman this risk is 4%, for a 60-year-old woman it is 6%.

-Page 79
Requests that the absolute reduction in the risk of dying from breast cancer be presented in absolute terms, not in relative terms.
Even organizations that support organized screening recognize that the reduction in mortality is not solely attributable to screening.

-Page 81/82/83
Randomized studies are not conducted in France, nor are observational studies.
The risk/benefit ratio is not the expected one. The risks are more important in women without risk factors or symptoms.

The pink campaign, an incentive campaign, is out of date with the scientific uncertainty and even with the relevance of the organized screening.
It is therefore necessary to reinforce women's possibilities of choice with more balanced information. For the moment, the information is judged insufficient.
On the INCa website, the information is fragmented, difficult to locate, sometimes contradictory, and the over-diagnosis is addressed in an unclear manner.
The information on the french health insurance website is also criticized, without making concessions, as it is considered to be overly encouraging because it emphasizes the "advantages" of organized screening.


- Page 108
The committee is asking for information, not marketing. Women are misled by Octobre Rose in contradiction with their demand for fair information. Confusion between screening and prevention must be avoided.


- Page 109/110 /111-115
The benefit-risk balance must be addressed and the notion of uncertainty must be included, and we must talk about interval cancers and over-diagnosis.
The committee would also like to see information on side effects and the illusion of mammography as an ideal method for cancer detection should be corrected.
The invitation should not be a convocation, and should include information on benefits and risks.
Information and training should be offered to health professionals, and the information should not be inciting.

-Page 121
Tomosynthesis: its benefit-risk ratio remains to be confirmed and research protocols must be developed to evaluate its use in screening. Tools must be implemented for the assessment of the programme in real time.

-Page 123
The committee reiterates and emphasizes the urgency and importance of promoting studies on over-diagnosis and over-treatment.

-The report on page 125
A controversial risk/benefit ratio and inadequate communication.

-Page 132
1-Consultation dedicated for women on their 40s.
2-Strategy prioritized according to level of risk, identifying high-risk women who will benefit from special and adapted follow-up and "under-risk" women who could be exempted.

Conclusions

  • Consideration of controversy in the information provided to women and in the information as well as in the training of professionals.
  • Implementation of research projects to better study the natural history of cancer (some cancers are mildly aggressive or regressing, contributing to over-diagnosis), and to be able to identify biological or imaging factors to define tumors requiring only surveillance. (ARC proposal)
  • permanent evaluation of the system, in order to have epidemiological and economic data relating to screening in France
  • integration of the general practitioner
  • maintaining double reading (Cancer Rose draws attention to the fact that double reading certainly increases false alarms)
  • evaluation of the practice of ultrasound, which causes false positives, the increase of which is greater than the number of cancers effectively detected.
  • Stopping early screening in women under 50 years of age with no particular risk factors.
    Cancer Rose reminds that the official HAS recommendations for participation in screening are from the age of 50 onwards, and not before.
  • Adapt the screening and follow-up strategy according to the level of risk.

Two scenarios:


Scenario1: Termination of the organized screening program, the relevance of a mammogram being assessed in the context of an individualized medical relationship.


Scenario 2: Discontinuation of organized screening as it exists today and implementation of a new organized screening program, profoundly modified.