January 2, 2020, Marc Gourmelon, MD, Cécile Bour, MD
In 2016, the citizen and scientific consultation on organized breast cancer screening conducted in France, called to consider a halt of screening .
Moreover, the information posted on the INCa (National Institute of Cancer in France) website was described as "fragmented, difficult to identify, sometimes contradictory, overdiagnosis approached in an unclear manner".
In April 2018, our collective expressed its concern about the persistent lack of information in the INCa documents  , which again and again minimizes overdiagnosis and is silent on overtreatment.
We had expressed our concerns in a response letter published in CMAJ (Canadian Medical Association Journal) under the title « Principles for Screening: Too few concerns for informed consent and shared decision making ? »  .
The principle of informed choice, promotion of autonomy and protection of the rights for screening participants is simple to implement, with pictograms  using absolute numbers. These pictograms use a consistent denominator, such as the benefits and harms associated with 1,000 screenings, based on evidence-based data.
Belgium has implemented this since 2013 for breast cancer screening.
On the other hand, French National Cancer Institute (INCa), like other French health agencies, is acting unethically, refusing to provide such information despite requests expressed during citizen and scientific consultation in 2016 and even a more recent request in the form of an open letter supported by the leading French consumer non-governmental organization UFCQC (UFC Que choisir). 
The inclusion breast cancer screening as an indicator in the ROSP (Remuneration of doctors for Public Health Objectives) french system was denounced during 2016 citizens' consultation .
With the legalization of an unbalanced information, as is proposed by INCa, this is absolutely outrageous.
The general practitioner is thus in a conflict of interest and he is still not trained on how to provide informed consent to the patient during the consultation.
A study in the Journal of Epidemiology and Public Health
A study published in the Journal of Epidemiology and Public Health  in December 2019, acknowledges that the information due to women and delivered by INCa it is still not up to standard.
The ostrich policy of the French authorities feeds heavy suspicions of interest links with "pro-detection" lobbies.
The current situation is unacceptable for women and their dignity in health.
This study is carried out in the perspective of creating a French decision aid tool in the context of organized breast cancer screening, in collaboration with INCa.
The study: Information about organized breast cancer screening. Do INCa and Cancer Rose meet the criteria for decision aid tools?
Controversies around organized breast cancer screening increase women's need for information. In France, the National Institute of cancer (INCa) is in charge of providing this information. Its mission is to "promote the appropriation of knowledge and best practices by patients, users of the healthcare system, the general population, healthcare professionals and researchers".
Cancer Rose (CR) site produces complmentary information, considering that the INCa's information is incomplete.
The objective of this study was to assess whether INCa and CR sites meet the IPDAS (International Patient Decision Aid Standards)   criteria for decision aid tools.
A comparison of available tools is performed.
- For INCa, the video of the last campaign launched between September 23 and October 14, 2018, the press kit, the web platform, the information booklet and the information leaflet have been selected for analysis.
- For Cancer Rose (CR), the different sections of the home page are: the information videos, the downloadable brochure and leaflet, the presentation, the studies section and the posters.
The information booklet and press kit for INCa and the studies section of the CR website were the documents meeting most IPDAS criteria .
The document meeting fewer criteria were the video for INCa and the information leaflet for Cancer Rose (a synthesis produced, after the exhaustive brochure, simply as a document that could be delivered to the patient at the end of the information consultation with the general practitioner).
Videos are more accessible tools for people with lower levels of so-called health literacy .
IPDAS criteria were used and an average was calculated using a software program.
They are summarized into percentages in table 2, click on the image to enlarge:
It can be noticed that for all criteria Cancer Rose scores significantly better than INCa.
The data in this table are listed in the text, for example :
For INCa, the validated data on which the information was based were absent in the video and leaflet. The press kit contained references in the text or annotated at the bottom of the page. The two documents addressing the overall risks of organized screening, were the web platform and the information booklet. The campaign video addressed over-diagnosis and over-treatment without citing them: "Screening: zero risk or not? It happens sometimes that a cancer which wouldn't have progressed at all or only slightly, will be diagnosed and treated, the zero risk doesn't exist". Screening at an early stage was emphasized without describing the natural history of the disease. The advanced time to diagnosis, an IPDAS criterion, was not explained. »
This finding is serious and presented in a factual manner.
For Cancer Rose the authors write this:
"For Cancer Rose, apart from pain, the risks inherent to screening were all described (false positives, over-diagnosis and over-treatment in all the documents; interval cancers, false negatives, radio-induced cancers and anxiety in the videos). When describing the benefits, the documents described the absence of effect on overall mortality. The benefits of "a woman who avoids death from breast cancer and whose life may be somewhat prolonged" were immediately counterbalanced in the video discourse by "a woman who will succumb to a serious effect of the treatment, a treatment she would not have needed in the absence of screening".
The natural history of the different types of breast cancer was described. The data on which this information was based, was documented by references."
There is therefore a more than notable discrepancy between the information provided by INCa and that of the Cancer Rose collective.
Here is an illustration of these results in diagrams, with the kind permission to reproduce them from Jérémy Anso, author of these tables and editor of the site "Hard to swallow", Doctor of Science; see his article on the subject.
- Present criteria must be the most numerous
- Incomplete criteria, must be the least numerous
- Absent criteria must be the least numerous as well.
4.1. MAIN RESULTS AND COMPARISON
- « The documents that best meet the IPDAS criteria are the information booklet and press kit for INCa and the Studies section for Cancer Rose.»
However, without pointing out the disastrous figures of INCa compared to the higher scores obtained by Cancer Rose, this flagrant imbalance would have deserved to be further highlighted.
- « The INCa video scored 6.3% in terms of content versus 50% for the Cancer Rose video. »
"The video (from Cancer Rose, editor's note) appeared to the researchers as being more oriented towards the disadvantages/risks than the benefits/advantages. »
Thus, while the Cancer Rose video gets 50% and the INCa video gets 6.3%, the only criticism expressed is the one of a committed video from Cancer Rose, but to be fair, a comment on the insufficiency of INCa's video is missing.
The discussion is limited to this observation and then presents a paragraph praising the Canadian colleagues and their video support .
This can be summarized in the last sentence of the study :
« This study is carried out in the perspective of creating a French decision aid tool in the context of organized breast cancer screening, in collaboration with INCa. »
This study demonstrates by the published figures, in the same way as we have pointed out in the past, that INCa is not fulfilling its function and its mission of information, as illustrates the comment comparing with our fellows in Canada.
"The Canadian Public Health Group on Preventive Health Care (supported by the Public Health Agency of Canada) provides women with a three-page general information document and one page documents by age (50-59, 60-69, 69-74). A 12-minute video is also available for viewing.
All of these tools encourage women to discuss screening with their family doctor. The video is very far from that of INCa in both form and content. "
This study even shows that INCa is doing "indigent" work, as evidenced by the 6.3% score obtained on its video. The authors, although transparent and factual in their results, hardly make the slightest criticism towards INCa. They do, however, acknowledge our work in the paragraph presenting the results.
According to the authors,the informational documents proposed by INCa require a high level of health literacy (or education, or alphabetization, see ref 12) from the public. On the other hand, videos are known as information tools that are more suitable for people with low health literacy levels.
At any moment INCa does not reach the average for the criteria expected to be present, reaching at best only 37.5%, which is very insufficient, where the Cancer Rose collective, with its own resources, which are those of the members and a few donations, reaches 62.5%.
With respect to the absent criteria, here again INCa is unbeatable with a maximum of 56.3% where Cancer Rose reaches only 25% of absent criteria.
Finally for incomplete criteria, INCa is still well ahead of us in all publications, reaching even 50% in 2 cases.
We are very satisfied that a review of epidemiology finally points out this problem of persistent institutional misinformation with regard to women.
We regret that this fact is mentioned only in the text of the document.
Unfortunately many readers often stop at reading the abstract.
It is unfortunate that there is no explicit questioning of the work of INCa, while this unethical and scandalous situation has persisted for many years already.
The mission of the French National Cancer Institute (INCa) is to "promote the appropriation of knowledge and best practices by patients, users of the healthcare system, the general population, healthcare professionals and researchers. As part of this mission, this agency provides tools and regularly conducts information campaigns", with a 2019 budget for prevention and screening of 6.4 million euros .
We would like that this public budget to be used for an objective information of women and not for the marketing of breast cancer screening by mammography.
For our part, of course, we admit the criticisms that have been made, of which we were already aware. The missing criteria and the scattered nature of our information will be corrected in a MOOC (Massiv Online Open Course) which is currently under construction and scheduled to be online in 2020. This tool, by its pedagogical and interactive nature, will compensate for these imperfections and will complete the information that the doctor and the patient need to make an informed decision in a collaborative exchange.
It is true that our information, in an assumed way, denounces more the risks than the benefit of screening, for two reasons:
- No authority, institution or information site denounce or inform women about the harm of screening in France.
- No recent studies since the 2000s have been able to demonstrate the proven benefits of screening, while publications alerting women to the risks are multiplying, including the growing over-diagnosis, a real public health issue.
 Canadian Task Force on Preventive Health Care. Cancer du sein (mise à jour). Calgary (Alberta) Canada: Screening tool involving 1000 people; 2018, . Available on https://canadiantaskforce.ca/tools-resources/cancer-du-sein- mise-a-jour/outil-de-depistage-aupres-de-1000-personnes/?lang=fr