Categories of systematic influences applied to increase cancer screening participation: a literature review and analysis
Joseph Rahbek , Christian P. Jauernik, Thomas Ploug, John Brodersen
(more about the authors ==> see at the bottom of the article)
April 20, 2021;
Summary Dr C.Bour, with the help of our referent patient Sophie
Under this title the authors aim to analyze how health authorities can subtly influence citizens to participate in cancer screening programs.
The researchers identified and analyzed several "categories of influence", i.e., several methods of pushing the public to undergo screenings.
They point out that when influences become too severe, this is at the expense of citizens' ability to make a personal choice.
Methods of study
Two methods were chosen:
- A systematic literature search was performed on three databases listing scientific articles and publications which are: PubMed, Embase and PsycINFO. In addition, a review of the so-called "grey" literature was carried out, i.e. information brochures and website content from regulatory authorities and patient organizations targeting general public.
- Relevant experts were contacted via international email lists and asked to provide examples of systematic influences in cancer screening. These experts are members of independent groups and have expertise in cancer and the collateral damage of screening.
These include the following groups: EuroPrev (18 members), Nordic Risk Group (24 members), Preventing Overdiagnosis (27 members), a Google group (breast-cancer-screening google group) with a special interest in screening mammography (42 members), and Wiser Healthcare (21 members).
From the 19 articles included and the expert survey, six main categories of systematic influence were identified: (a) misleading presentation of statistics, (b) misrepresentation of harms versus benefits, (c) opt-out, (which consists in considering as passive consent the fact that a solicited patient does not object to the invitation to screen), (d) recommendation of participating, (e) fear appeals, (f) influence on general practitioners and other healthcare professionals.
The authors provide examples for each category
a) Misleading presentation of statistics
This involves presenting mortality reduction data in an embellished way by using percentages of relative reduction in the risk of dying, instead of raw figures.
Editor’s note : For example, in the case of breast cancer screening, a mortality reduction of 20% is presented. This is a reduction in the risk of dying when comparing two groups, i.e. one group against another.
With this kind of presentation, one might think that 20 out of 100 people screened would die of cancer. This is not the case, explanation:
If out of 1000 screened women 4 die of breast cancer, and out of a group of unscreened women 5 die of breast cancer, the passage from 5 to 4 constitutes mathematically a reduction of 20% of mortality, but in absolute figures it only makes a difference of one woman... This is why it is important to always require a presentation in real data, and not in percentages, which embellishes the situation.
Often physicians and patients have a limited understanding of the statistics, and exposing risk reductions in relative numbers is likely to increase participation especially because citizens overrate the benefits of screening.
b) Misrepresentation of harm compared to benefits:
This method of influence can be applied by presenting the benefits in relative figures, as we have just seen, and the harms in absolute figures. Alternatively, certain types of harms can be minimized and even omitted altogether.
The authors cite as an example a British information brochure on mammography screening in which the reduction in breast cancer mortality was emphasized, but a major harm such as overtreatment was omitted . In addition, the same British brochure showed the risk of overdiagnosis after one round of screening, and the cumulative reduction in mortality after five rounds of screening, thus minimizing the harm while exaggerating the benefit.
Failure to inform correctly also addresses the omission of harms such as overdiagnosis and overtreatment.
Editor's note: We will detail in a dedicated paragraph the very same shortcomings in the information given to women in France, which were denounced in this study, and which were also mentioned during the public consultation on screening in 2016 in France. We will come back to this.
c) Opt-out systems
This consists of assigning citizens a pre-booked appointment at the point of the invitation. If the person does not wish to participate, he/she must actively opt out. The non-refusal of the patient is considered de facto as acceptance to participate.
Editor's note: In France, we do not have this system of prebooked appointments, but the system of reminders is widely used if a patient does not show up for a screening mammography appointment (reminders by mail and sometimes SMS).
d) Recommendations of participation
A recommendation to participate in a health procedure does not provide evidence about the effectiveness or appropriateness or benefit of a screening program. Instead, it promotes one option (to participate) as the smartest or best, based on the authority of the source from which the injunction emanates. This is the argument from authority.
Celebrity staging is also widely used in different countries to increase participation. Humorous examples are given in the article by Rahbek et al. In an Icelandic government video, after examining a citizen's rectum, the doctor slaps him on the bottom and exclaims, "More men should follow your example and take care of their own ass" - a recommendation, unaccompanied by factual data.
e) Fear appeals
This is a well-tried lever. By relying on the uncertainty of life and emphasizing the human fear of dying, it is easy to convince.
All of the above levers are illustrated in an excellent and pictorial way in the Cortecs media article: https://cortecs.org/2016/05/ (Editor's note)
f) Influence on general practitioners and other healthcare professionals
The most obvious one is the system of reward by remuneration when the professional encourages a patient to participate, called P4P (Pay for performance) or ROSP (Remuneration on public health objectives) in France.
It is not used in France but is in force in Uruguay, and it was almost introduced in Germany: it is the legislative influence.
In Germany, in 2007, a law proposal suggested that if an individual did not participate in a cancer screening program and was subsequently diagnosed with the type of cancer for which he or she had been called for screening, then that individual would have to pay double the health tax - a law proposal that was finally rejected.
The authors' analysis shows that there is a common point between the six main categories of influence detailed in the article: they work through psychological biases and and personal costs (i.e. time consumption or financial) on non-participation.
The article here focuses essentially on "nudging" populations, a term that refers to anything that predictably changes people's behavior by pushing them into what you want them to do, without any scruples, and even to the point of financial incentives.
Insofar as patient autonomy and informed choice are important, the authors say, the use of such influences is ethically questionable in cancer screening programs where the benefit/harm ratio is complex and scientifically contested.
Therefore, they argue, there is a need to find better ways to facilitate participation by willing citizens, without pushing reluctant citizens to participate. Instead of evaluating cancer screening programs on the basis of participation rates, programs should be evaluated on informed decision rates, regardless of participation or non-participation.
• This study finds six categories of systematic influences applied to increase participation in national cancer screening programmes.
• The categories of influences work through psychological biases and personal costs of non-participation and might not be compatible with the citizens’ informed choice.
• Research on how to properly implement informed decision models as not to complicate participation for otherwise willing citizens are needed.
Methods of pressure and manipulation by the sanitary structures in France, in particular for breast cancer screening by mammography
We will take up the six methods of influence described and analyse their application in France, specifically concerning breast cancer screening which is our subject of concern. The shortcomings of information in France have been very well identified and described in the report of the citizen and scientific consultation on breast cancer screening (2015/2016) which, let us remember, called for a halt to this screening (observations of multiple failures in the information given to women).
It is important to underline the incredible cynicism of the National Cancer Institute which uses this same publication to improve the participation rate in screening!
Indeed, on the Institute's website, in the section intended for doctors (thematic access "health professionals") this publication is quoted as a basis for improving the participation rate, ignoring the denunciation of the unethical character of the influence techniques by the authors of the study
"Conducted on the basis of a systematic review of the literature (19 articles) and with the help of experts, this study identifies different types of influence allowing to improve the participation rate in screening programs."
The critical analysis of the Rahbek et al. study is not mentioned at all...
Let's look at the information given to women according to the 6 categories of influence analyzed in the article.
a) Misleading presentation of statistics
Rahbek et al. cite the INCa booklet in Table 5 of the supplements section of their study (TABLE 5. GREY LITERATURE SEARCH RESULTS) as an example of misleading presentation of statistical data, and they denounce the French booklet's presentation of mortality in terms of relative risks. In fact, in the French booklet, the reduction in the risk of dying from breast cancer (this so-called gain in mortality) is announced by INCa to be between 15 and 20%. We have also analysed this booklet and made the same observations about the misleading and embellishing information concerning the supposed gain in mortality from breast cancer screening .
When we visit the INCa website, which is supposed to guarantee proper information to the population, we immediately come across the same flaw denounced by the publication, here: https://cancersdusein.e-cancer.fr/infos/pourquoi-les-autorites-de-sante-recommandent-de-realiser-un-depistage/ : "International studies estimate that these programs can prevent between 15% and 21% of deaths from breast cancer."
The same presentation can be found again and always on the French Health Insurance website, in spite of the citizens' requests to avoid this pitfall, superbly ignored and scorned by these authorities, which are nevertheless heavily pinned for their failings, as can be seen on the website,
b) Misrepresentation of harms versus benefits
On the French Assurance Maladie website, it is impossible for a patient to obtain information on overdiagnosis or overtreatment. In the search box there are no hits.
But in the tab "organized breast cancer screening" you will find a video made by the INCa and a reference to the page of the Institute.
The benefits, on the official site of the INCa, are largely developed, and the harms are called here modestly the "limits of screening". In the small paragraph 'DIAGNOSIS AND TREATMENT OF SLOW PROGRESSIVE CANCER', overtreatment, a direct consequence of overdiagnosis for women, is never mentioned.
Overdiagnosis is indicated at a percentage of 10 to 20%, figures that are completely obsolete and have been revised upwards for a long time.
Even lower numbers appear on the page for professionals: "Based on published studies, overdiagnosis could be in the range of 1-10% or even 20%. "
https://www.e-cancer.fr/Professionnels-de-sante/Depistage-et-detection-precoce/Depistage-du-cancer-du-sein/Les-reponses-a-vos-questions The same observation can be made on the site dedicated to breast cancer screening (Prevention and screening of breast cancer) where you will find exactly the same wording.
We had also carried out ourselves a quantitative evaluation of the informative value of this site where the inciting for screening is obvious.
The French brochures are again cited in the "supplements" of the Rahbek et al study, item 'MISREPRESENTATION OF HARMS VS BENEFITS'; the authors denounce the omission of overdiagnosis in the official brochures. To be more accurate, overdiagnosis is mentioned in the booklet but very much minimized, and the description of overtreatment, a corollary of overdiagnosis, is completely missing.
Still in the same section, Rahbek et al. denounce the omission by the official French brochures of the risk of exposure to ionizing radiation. We had also noted this point in the analysis of the booklet (reference 11). But in fact this point is really mentioned on page 12 of the INCa booklet, which states that: "the risk of death from radiation-induced cancer is of the order of 1 to 10 per 100,000 women who have had a mammogram every 2 years for 10 years."
This is true, but it should be pointed out that this risk increases with the repetition of examinations and incidences. Let us recall that 3 mSv are received on average with a mammography (between 2 and 3 images per breast depending on the needs), which corresponds to already 9 months of annual irradiation (which is 4.5 mSv per year for a French person).
c) Opt-out system
As mentioned above, this system is not used in France. However, if a woman does not go for screening, she will be reminded several times, sometimes even by text message, giving women the impression that screening is mandatory. However, this is not the case, screening is not mandatory and we have provided a pre-filled form on the home page that women who do not wish to undergo mammography screening can send to their departmental screening structure. 15]
At the end of the INCa booklet, it is clearly stated "You cannot or do not wish to be screened. Fill in the questionnaire in the invitation letter and return it to the address indicated. Please be aware that you can change your mind at any time. "
d) Recommendations for participation
The argument of authority is widely conveyed by opinion leaders, a radiologist speaks on the home page of the "breast cancer prevention and screening" website.
In the midst of the Covid pandemic, we saw a renowned oncologist calling on women to continue screening, scaring them and arguing loudly that breast cancer would kill more than the pandemic. When we read that the 100,000 mark was passed in one year (breast cancer causes 12,000 deaths/year), we realize how sordid these counts seem and especially how some media doctors do not hesitate to exaggerate in order to convey inciting and frightening messages.
The stars in France are not to be forgotten, as shown by the TV show " Naked Stars " where celebrities unveil themselves for " the good cause " with messages that are intellectually indigent and insufficient in terms of scientific information.
In 2011, Marie-Claire published multiple photos of French stars who let themselves be photographed naked to "raise awareness" of breast cancer screening, allowing this media a considerable and profitable increase in its sales.
e) Fear appeals.
The organization Pink Ribbon, formerly 'Cancer-du-Sein-Parlons-en' , broadcast a spot in 2015 based on messages related to death (breast cancer, the most common, the most deadly).
The INCa is not lagging behind and in 2018 was published this poster: "This cancer is at the same time the most frequent and the most deadliest in women. Yet if it is detected early, the treatments are generally less burdensome and the chances of recovery greater."
Cancer is constantly associated with a verdict of death, so much so that the medical, societal and media messages are based on a military and bellicose jargon: cancer is an enemy that will inexorably invade the body. The patient either wins or succumbs, despite the "therapeutic arsenal" or the "fight" led by the patient. As soon as a cancer is diagnosed at the mammogram, the feverishness that the doctor shows in making appointments for his patient for other examinations and surgery reinforces the idea of imminent death for the patient. Each newly diagnosed woman feels banished from the world of "normality" and threatened with expulsion from the social system (work, family, insurance, bank, etc.). The stress that some women feel after the announcement is such that they lose all control over their lives, professionally, emotionally and in their families. And this is very well perceived by the other women in the family, friends or professional environment.
f) Influence on general practitioners and other health professionals
In France this is the ROSP system (remuneration on public health objectives).
Note that on the site dedicated to professionals , the risk of "unnecessary mutilation of women screened by excess" is well recognized, the controversy and the consultation of 2016 are mentioned, nevertheless the premium is maintained (according to web page of December 29, 2020).
But even worse is the financial incentive on the women themselves. Indeed, in 2020 the INCa organized a masquerade of consultation where one item caught our attention, as it proposed to pay women this time in order to bring them to screening.
A citizen has expressed her concern in an article published in the JIM, denouncing the lack of ethical consideration in this proposal for "paid participation".
The manipulation of women is a real scientific topic
Rahbek et al have perfectly identified the shortcomings of the information provided to the public on screening in general, information that remains globally often inciting, which goes against the ethical objectives that we owe to the patient.
The shortcomings and failings of the official French brochures were noted, including those of the INCa, an institute that is supposed to protect the patient.
The booklet of the INCa, already quite imperfect, is sent to women eligible for screening only once at the time of their first convocation when they are 50 years old. In 2017, when the booklet was published, women aged 50 who were first called for screening received it, but women over 50 at that time will never receive it.
And what can be said about the INCa's multi-language brochure, which is even more succinct?
From our point of view, we can only be dismayed and distressed to see to what extent the demands of French citizens, who had, during the 2016 consultation, identified the same problems, have remained unheard and scorned by the French authorities.
You will find here a table annexed with the original publication, showing the research of the so-called 'grey' literature (brochures and information websites). French brochures are named in several items of misleading communication of data (yellow highlighting).
We can also see the strong preferential communication on mammography screening (blue highlighting).
Master student Department of Public Health, Section of General Practice
Research Unit for General Practice, Section of General Practice, Department of Public Health, University of Copenhagen, Copenhagen K, Denmark
Christian P. Jauernik
The Research Unit for General Practice, Section of General Practice, Department of Public Health, University of Copenhagen, Copenhagen K, Denmark
Thomas Ploug is Professor of ICT (Information and Communication Technology) Ethics at the Department of Communication and Psychology at Aalborg University in Copenhagen. He holds a Master of Philosophy from the University of Copenhagen and a PhD in ICT ethics from the University of Southern Denmark. His research interests and projects cover topics in different areas of applied ethics, such as ICT ethics, medical ethics and bioethics. He is currently involved in projects on online and offline consent behavior in the health context, and nudging in the health sector. He is head of the research group on communication and information studies, director of the Centre for Applied Ethics and Philosophy of Science, member of the Danish Council of Ethics and the clinical ethics committee of Rigshospitalet, Copenhagen.
John Brodersen, Professor, University of Copenhagen
John Brodersen, the senior author of this article, is a general practitioner with more than ten years of experience in clinical practice. Dr. Brodersen holds a PhD in public health and psychometrics and works as an associate research professor in medical screening at the University of Copenhagen, Department of Public Health, Research Unit and Section of General Practice.
His work was used in the development of the 2020 WHO Screening Guide, which builds on the background papers written by John Brodersen for the 2019 WHO European Technical Consultation on Screening.
He is also a co-author of the 2012 Cochrane booklet on mammographic screening.https://www.cochrane.dk/sites/cochrane.dk/files/public/uploads/images/mammography/mammografi-fr.pdf
He is a member of the Board and Scientific Committee of the non-profit organization "Preventing Overdiagnosis "https://www.preventingoverdiagnosis.net/?page_id=6
His research focuses on the development and validation of questionnaires to measure the psychosocial consequences of false positive screening results. Dr. Brodersen has published numerous articles in peer-reviewed journals.
In the area of self-diagnosis and screening, Dr. Brodersen specializes in the areas of sensitivity, specificity, predictive values, overdiagnosis, informed consent, and psychosocial consequences for healthy individuals when tested.
He also teaches nationally and internationally on evidence-based medicine.
PhD thesis:Brodersen, J 2006 , Measuring the psychosocial consequences of false positive screening results - breast cancer as an example, PhD thesis, Månedsskrift for Praktisk Lægegerning, Department of General Medicine, Institute of Public Health, Faculty of Health Sciences, University of Copenhagen. Copenhagen
 Gotzsche PC, Hartling OJ, Nielsen M, et al. Breast screening: the facts–or maybe not. BMJ 2009;338:b86.
 https://cancer-rose.fr/en/2021/04/02/screening-propaganda/ (part OPINION LEADERS AND MEDIA)
- page 125, le constat d'une information inadaptée.
- page 57 : les incitations financières
- pages 85, 92, 93, 115 : la communication "lacunaire" de l'INCa
- pages 95, 96 jusqu'à 100 : la communication 'simpliste' de l'Assurance Maladie
- page 133 : les deux scénarios proposés par le comité de pilotage pour l'arrêt du dépistage mammographique.
 https://cancersdusein.e-cancer.fr/infos/un-livret-sur-le-depistage-pour-sinformer-et-decider/ ou https://www.e-cancer.fr/Expertises-et-publications/Catalogue-des-publications/Livret-d-information-sur-le-depistage-organise-du-cancer-du-sein