WHY do many women not participate in mammography screening, the program that regions make available free of charge for the early detection of breast cancer? Europa Donna Italia, the advocacy movement for patients’ rights, asked them directly, through workshops organized with associations and groups of specialists. The results and the actions proposed to overcome them – discussed with scientific societies within a broader project – were presented to the institutions on May 3, in a meeting organized in Rome in collaboration with Motor Health (here the link to review the direct ).
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From the modalities of invitation to humanization
Several problems have been identified at different levels. Let’s start with the invitations to participate in the screening, where the perceived criticalities are above all in the obsolete methods of sending: “Paper letters sent by post, with no guarantee of delivery, and with ineffective and unclear messages”. In addition, “the difficulty in making an appointment or requesting information through the call center” emerges. Regarding the welcome before the exam, little empathy is noted: “Often women are not welcomed and they do not receive information”. A problem that is accompanied by the “poor relationship skills on the part of radiology technicians”. With respect to the exam itself, however, the women underline “the excessive waiting times to obtain the result”, “the fact that the images are not delivered”, “the lack of information in the event of a call for in-depth examinations” (which takes place over the phone without being given the opportunity to ask for explanations, often generating avoidable stress) and “the absence of indications on the breast centers to turn to if mammography reveals a tumor”.
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Improve communication
Based on what emerged, patient associations and specialists from the scientific societies Gisma (Italian Mammographic Screening Group), Sirm (Italian Society of Medical Radiology), AITeRS (Italian Association of Breast Radiology Technicians) and ONS (National Screening Observatory) worked in synergy to draw up some recommendations. “The fact that there is an alliance is fundamental: we must understand the needs and where to act, bearing in mind that from a technical point of view not everything is simple”, he said during the round table. Livia Giordano, Head of Epidemiology and Screening SSD AOU Città della Salute e della Scienza, CPO Piemonte-Torino and Member of Gisma Coordination. If organized screening is rigid – he explained – it is because it needs to monitor all its steps: “We have been thinking for a long time about the best way to invite women. We have an obligation to reach them all, and the lists personal data are the only ones that enable us to guarantee fair access. On the other hand, in recent years we have encountered the problem of privacy, of not being able to use immediate channels such as telephone numbers or an email, exception of the Pec, which obviously not all people have. It’s time to change, of course, but we must do it in the best possible way, respecting privacy and fairness. We have also made a lot of efforts to improve communication, which seems trivial but it is not ” .
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Between technical times and avoidable anxieties
“This work has focused on problems that we experience every day, but which we do not always have the opportunity to grasp”, he added. Pietro Panizza, Head of Radiology with a special focus on breast at the IRCCS San Raffaele Hospital in Milan. For example: why can the wait to receive the answer take up to two months? The problem is – again – in the mechanisms of communication: the radiologist communicates the result to the Local Health Authority, which must put it on a letter and send it. These times cannot be shortened, if not through digitization. Too bad that in public health the use of digital in respect of privacy is still a big problem. And what about the mammogram not being delivered? “In reality – explained Panizza – it is a problem that can be easily solved, because the local health authorities give the possibility to request it for free.
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On the other hand, one of the major critical issues concerns the recall for further information: as a rule, the woman receives an aseptic phone call from the ASL that tells her to go to the hospital after a certain number of days to complete the exam. The operator cannot say more, because he is not trained to do so. “This increases the woman’s stress, because when she is called back she is convinced that she has a tumor, when instead there are many reasons – not only clinical – why it may be necessary to repeat the exam or have others”. In short, we need to find a way to manage this communication, with humanization and empathy.
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The question of “old” equipment
During the meeting, the obsolescence of mammography equipment was also discussed. An unjustified alarm according to Panizza: “The machines must be suitable by law: daily, monthly and annual checks are carried out”. And the age of a piece of equipment may not be the same as the age of the spare parts: “We should explain all this, instead of sending out terrorist messages. On the other hand, it is essential to inform women about other aspects, such as the fact that dense breasts limit the sensitivity of the examination. This means that identifying a possible lesion becomes much more complex “.
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The 6 requests to the institutions
Europa Donna summarized the results in six requests to institutions, with the aim of launching a path to improve the diagnosis and screening service. Here they are.
1 – Updating the message and the methods of delivery of the invitation and the outcome;
2 – Compulsory training for radiology technicians;
3 – Better communication in the invitation to 2nd level exams;
4 – Connection between the Screening Center and the Breast Unit, in order not to abandon the woman to herself in critical moments, but to insert her into the structured path of care and assistance that distinguishes the multidisciplinary breast center;
5 – Systematic verification of family history for tumors at the first access to screening. In this way, it will be possible to select women who need more in-depth checks and genetic counseling;
6 – Activate screening from 45 to 74 years in all Regions (currently most of the regional programs provide for screening in the 50-69 age group).
“These requests were formulated thanks to the joint work between scientific societies and associations, and collected in a dossier,” he said. Rosanna D’Antona, President of Europa Donna Italia. The problem of screening is well before the arrival of the pandemic: as shown by the Surveillance Steps data for the three-year period 2017-2020, almost half of women in the age group 50-69 years – the one most at risk of breast cancer – does not participate in the programs. “We are talking about 16 million women (Istat data, ed.) – underlined D’Antona – and if we consider the range between 45-74 years we reach 24 million women. It is important to allocate the funds to make a call to screening”.
The rules for data protection
But can privacy really be an obstacle to fulfilling any of the six demands? For Silvia Melchionna, official of the Guarantor Authority for the Protection of Personal Data – Health Sector, privacy: the DPCM (decree of the President of the Council of Ministers) of 8 August 2013 – he explained – on which the Authority gave a favorable opinion , provides for online reporting and booking portals, a possibility that is unfortunately exploited only by private structures, but which can also choose public structures. Provided that – he added – the element of privacy protection is not put aside, but is integrated from the outset into the health service that is to be offered.
In Lazio, reservations will be made online
But something could improve already in the near future. In Lazio, for example, a pilot project for online screening mammography booking is about to start. The same model used for anti-Covid vaccinations will be used: “With three clicks and only with the health card, you will access the reservations screen, with the possibility of choosing places and times to do the mammogram”, he said. Alessio D’Amato, Councilor for Health and Social-Health Integration, intervened during the meeting: “We must treasure what has been done during the pandemic, eliminating bureaucracy. If we have done it for millions of vaccinations, I do not see why we cannot do it for 400 thousand mammography screenings a year. In the future, access to reservations will also be possible via an app: a system that we are still testing and that we want to make available to other regions “. D’Amato invites women from Lazio who fall within the screening age group to participate as soon as the car starts up. And we will, of course, wait for the outcome of this test.