The patient perspective

B2B aims to develop an innovative device to study and understand the metastatic process from the breast cancer to the bone, and, in the long-term, to discover the factors that block the migration of cancer cells, thus preventing their spread to other organs. We got in touch with the advocacy movement Europa Donna, to ask understand their point of view on pre-clinical research, which has not yet a direct impact on patients.

Europa Donna – The European Breast Cancer Coalition –  is an international movement that represents the rights of women in public institutions to prevent and treat breast cancer. Born in Milan in 1994 from an idea of the oncologist Umberto Veronesi and thanks to the support of ESO (European School of Oncology), the association focuses on awareness and advocacy on breast cancer with the aim of responding to the growing needs of women who face this disease. The association is today present in 47 European countries and it represents the main movement on the subject.

We had the pleasure to interview the president of the Italian coalition Rosanna D’Antona, an ex-patient and expert in the sector of Public Relations and Communication. In 2010, she accepted the challenge to become the spokesperson for the rights of Italian women in the fight against breast cancer, assuming the role of national representative of the Europa Donna movement. In this interview, we talked about the activities of Europa Donna in Italy and the relationship between patients and preclinical research.

 The original interview in Italian is available at this link; for a list of useful resources please see here.

  • What are the main activities of Europa Donna Italy?

The mission of Europa Donna Italy is the protection of women’s rights regarding breast cancer: ensure fair access to prevention, diagnosis, treatment and high-quality assistance, during the disease stage as well as in the follow-up. Europa Donna Italia

Is committed on several fronts: increase the awareness on breast cancer; urge institutions and the scientific community to ensure better and well-distributed pathways of diagnosis, care, and assistance in all regions; assess the application of national and regional regulation on the subject; promote the synergy between associations of patients active in breast cancer throughout Italy and their involvement in the discussion for the coordination and monitoring of health services and finally improve the communication and the relationship between doctor and patient.

  • Who are the main beneficiaries of your activities?

As an advocacy movement, Europa Donna Italia has no direct relationship with patients or family members: our direct audiences are the associations that support patients, and which are for us the spokespersons for women’s needs. To these associations, Europa Donna Italia offers opportunities for meeting and sharing, training and updating courses as well as orientation and support in advocacy initiatives carried out locally. We also interface with the scientific community by contributing to research projects, updating meetings and training events. More generally, our ultimate beneficiaries are women in general, who take advantage of the information tools disseminated by the association, for example, a website dedicated to breast cancer, several documents on issues related to the pathology, seminars and conferences, etc.

  • How does a person involved in the disease generally approach the scientific side of breast cancer? Is there generally a curiosity to understand the complexity and the mechanism of the disease?

The attitude might differ from person to person and depends on several factors, like the type of education, the social context, personal inclination, etc. In general, women with a high education, who often carry out intellectual jobs and are used to stay updated and explore complex topics, are more likely to investigate even the most technical aspects of the disease. In addition, women with metastatic breast cancer, for whom research progress is of particular importance as it can influence their life expectancy, are the most sensitive and knowledgeable about clinical trials and new drugs.

We have also noticed that women who volunteer to support other women affected by the disease feel even more strongly the need to properly interact with doctors and to get to know better the pathology and its treatment opportunities. To respond to this specific need, Europa Donna Italia, in collaboration with a multidisciplinary team of specialists involved in the treatment of breast cancer, started an education and updating program, open to all the associations of its network. The program, now in its 4th year, organizes meetings with an increasing number of participants from all regions of Italy.

  • What relationship does Europa Donna have with scientific research on breast cancer? For example, you provide information on clinical trials and innovative drugs – how do you convey this type of information?

Our main information tool is the website europadonna.it, which is specifically designed to offer to the over 53 thousand women, who every year in Italy discover to have breast cancer, a credible and safe network in the first, traumatic, moment after the diagnosis. The website also comes in handy to the approx. 800 thousand Italians who face, or have faced, this disease, and supports them during and after treatment. More generally, we wanted to create a tool to raise women’s awareness on breast cancer, giving them access to proven and professional information rather than “Doctor Internet”.

To respond to the needs of patients, the website was designed based on the users’ directions and its content is developed by a team of doctors and health journalists. Each user, depending on its interests, can find either essential and concise material or more in-depth and documented information. The section dedicated to clinical research is also articulated on different levels, to adapt to the user needs. This section, as all the others on the website, has been developed with the advice and supervision of experts, to offer reliable and updated information. Those who have specific questions or doubts to be clarified can find support on the chatbot, a virtual assistant available to provide answers 24 hours a day and, if necessary, to transfer the most complex questions to a panel of scientific consultants, who answer within hours. The portal also has a rich news section, where the latest research on breast cancer is constantly reported.

Research results and innovative solutions are one of the main topics covered in the periodic training for our network of associations; we often invite oncologist directly involved in the trial to explain them. For us, it is essential that this type of information is conveyed by experts and professionals of the sector that are also able to explain complex topics in accessible language.

  • Often the patient’s attention is mainly directed towards clinical research, which is more likely to have an impact in the short-term. What kind of relationship instead there is with the preclinical research, that doesn’t have yet a repercussion on the patient lifestyle?

Preclinical research is indeed an area still less explored by the patients, probably due to the intrinsic difficulty in dealing with concepts expressed with complex jargon, and that often requires specific training to be fully understood. However, this does not imply a lack of interest, rather little accessibility.

Researchers should have the opportunity to receive ad-doc training on how to communicate the contents of their work to the public in general – this would be an important first step to facilitate the mutual dialogue between researchers and patients, which can bring benefit to both sides. Furthermore, the researchers could intervene as teachers in the training dedicated to the associations, which represent an important step to bring technical notions to patients.

  • Researchers involved in preclinical research often fear that their results might be misunderstood by the public, especially if sensitive to the topic. It often happens that interesting discoveries but still confined in the laboratory setting can be misinterpreted as of immediate use. Instead, the process that leads to a clinical application is very long and uncertain. It is correct, in your opinion, to convey this type of information; if so how should it be done? How can the expectations and hopes of the public be managed?

I believe that it is not just correct but necessary that the public is kept informed of the great work that researchers do every day, often silently, and the amount of time, effort, tenacity and resources necessary to improve therapies and increase survival and quality of patients’ lives. The risk that a piece of news is misunderstood or that preliminary results are interpreted as yet applicable undoubtedly exists, but it a risk worth taking. Only by spreading this news, we can raise awareness of the activities done by preclinical research. Once again, the solution in my opinion relies on training: researchers trained to communicate to the public, patient associations trained to convey such information.

USEFUL RESOURCES

  • European Commission Initiative on Breast Cancerhttps://healthcare-quality.jrc.ec.europa.eu/  – The European Commission Initiative on Breast Cancer (ECIBC) aims to improve the quality of breast cancer services in Europe, thus reducing the burden of cancer and decreasing the avoidable differences in breast cancer incidence, prevalence, mortality and survival. Based on the latest scientific evidence available, the ECIBC offers clear and independent guidance on screening and care.
  • Breast Cancer CORDIS Results Pack: an extensive article about other EU-funded projects linked to breast cancer that showcases the diversity of research in Europe on the topic. 
  • Patient-targeted content by ESMO (European Society for Medical Oncology): https://www.esmo.org/for-patients/resources-for-cancer-patients – Besides organizing educational programs such as a dedicated Patient Advocacy Track during the ESMO Congress, ESMO strives to continually provide patients with useful information and updates.