Brussels – “Everyone from birth has dual citizenship, in the realm of health and that of illness. Although we would prefer to use only the good passport, sooner or later each of us is forced, at least for a certain period, to recognize ourselves as citizens of the other country.” It is the beginning of one of the books that most marked the debate on the concept of health and illness in the eighties and nineties of the last century (and beyond): “Illness as a metaphor” by Susan Sontag, American writer and philosopher, written when she herself was diagnosed with breast cancer. 45 years have passed since these words were published but their echo still resonates within a new debate – cultural, political and ultimately economic – underway in the heart of the European Union. In Brussels, at the fifth European Cancer Forum, we are talking about health literacy. What is it about? “We are all possible patients. Or we are caregivers, or family members, or friends of someone who has cancer. How do we obtain and interpret the information needed to make important decisions about treating ourselves or caring for others? This is exactly where health literacy comes in,” he replies Kristine Sorensenpresident of the International Health Literacy Association, among the speakers at the event.
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What is the European Cancer Forum
The European Cancer Forum – hosted by MSD in collaboration with Lung Cancer Europe, European Oncology Nursing Society, All.Can, Digestive Cancers Europe, Cancer Patients Europe and the Swedish Institute for Health Economics – is an annual event to encourage international comparison between members of the European Parliament and with other stakeholders. And this fifth meeting – entitled “Patients, policies, projects: is Europe on the right track to defeat cancer?” – had the aim of taking stock of the Beating Cancer Plan, the European Plan to fight cancer launched in February 2021 and financed with 4 billion euros. A reflection that is more necessary than ever given the imminent revision of the Plan itself, in 2024, by the European Commission.
Lung cancer, a Call to Action from Europe for early diagnoses without inequalities by Irma D’Aria 07 December 2022
What is health literacy
Precisely health literacy (an expression which in Italian is translated as health literacy) was one of the topics of the discussion. Because if you think that it is only the individual’s responsibility to take care of their health, then they are making a serious mistake, experts agree. It is up to the health and education systems, therefore to governments and international political organizations (i.e. the EU), to put in place programs that allow everyone to manage complex information (now more than ever) such as that concerning the prevention and treatment of cancer. “Health literacy is not a personal attitude, but a professional competence – continues Sørensen – On the part of governments it concerns providing information, but also ensuring that it is accessible, understandable by all and then used. I’ll give a trivial example: we know that approximately 45% of all cancers – 30% of breast cancers – could be avoided, and on the basis of this data we ask people to adopt healthy lifestyles. However, we do not train school teachers and we do not have organic programs to promote and maintain health, nor do we promote physical activity enough. Today health should be taught like any other subject, like mathematics, and there should be a new profile for teachers.”
As regards breast cancer, for example, involving a woman in health literacy programs means having positive effects on at least three generations, because health-related behaviors strongly depend on family example, she reiterates Marzia Zambon, executive director of Europa Donna (The European Breast Cancer Coalition). “At the same time, however, we must be very careful so that the messages that are passed do not blame the patients”.
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Getting the topic of “health” out of health care settings
Studies have already shown in the past that the neighborhood in which one grows up also has an impact on health, and this too is a space for political intervention. In short, the topic of “health“, physical and mental – that is, prevention, early diagnosis, illness, treatment – should leave the walls of hospitals to enter the community and be normalized. And skills are also needed to introduce these themes into work environments, because – underlines Sørensen – it’s about doing something more than putting a basket of fruit in the corridor and giving free entry to a gym.
Already about 10 years ago, research conducted in Europe showed that, even in nations with good health and education systems, many people declared they had difficulty managing to take care of their health. A new survey covering 17 countries shows that the situation has not changed and that age is not a valid indicator.
Breast, what are microcalcifications? by Tiziana Moriconi 22 September 2023
The point on vaccinations against cancer
One of the topics on which there is the least literacy is that of vaccines, including the HPV vaccine for the prevention of cervical cancer in women. Eliminating this tumor is one of the pillars of the Beating Cancer Plan (as well as of the World Health Organization, at a global level), since in Europe there are 26 thousand deaths every year. The target is to vaccinate 90% of girls (up to 15) and a good portion of boys by 2030, and Sweden appears to be the closest nation to achieving this. European recommendations are expected within the Prevention Package, which should be published in the first months of 2024, specifically on vaccination to prevent tumors.
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The point about screening
Furthermore, health literacy is reflected in the differences in adherence to organized screening, which are also evident within Italy (as well as Europe). Today these programs are activated for breast, cervical and colorectal cancer, but in the near future they will also concern (in smokers) lung cancer, which represents the leading cause of cancer death globally (while breastfeeding continues to be the case for the female population). Precisely because early diagnosis makes the difference on the possibility of treatment and survival, it is now a priority to identify and replicate the best best practices of different nations to promote it, recalls the MEP Cristian-Silviu Bu?oi.
Mammography, if done regularly, can reduce mortality by 66% by Barbara Orrico 01 December 2023
Share medical decisions
Then there is a whole other chapter that concerns care, and in particular the sharing of therapeutic choices, which is based on health literacy. “Sharing cannot be improvised, but is a process based on 4 steps – he explains Arwen Pieterse, associate professor and researcher in communication and decision making at Leiden University Medical Center – First, patients should be aware that they have the opportunity to intervene in medical choices, rather than just listening. Second, information about treatment options, risks and benefits should always be shared in a way that is clear and understandable to everyone. Third, the patient should have the opportunity to discuss his or her preferences with the doctor; fourth, the final choice of treatment should combine medical expertise with what is important to the patient.”
How much is the work of patient associations worth? by Dario Rubino 21 July 2023
If it is true that within the EU cancer treatments cost over 100 billion euros a year – as reported Thomas Hofmarcher of the Swedish Institute for Health Economics – and that the fight against cancer is first and foremost a question of equity, perhaps it is the right time to also calculate how much a serious investment in health literacy could save. Meanwhile, in our country, next December 12th new tools from the Council of Europe will be presented in Rome specifically to promote health literacy.