In 1984, banking executive Susan Knox moved from New York to take up an exciting new position at a major international bank in Milan.
She soon settled there and started a family. Some time later an unexpected shock changed her life entirely: she was diagnosed with breast cancer. Her experiences in the years that followed led her to start looking for ways to improve the situation for other women faced with the disease.
“This journey, facing the challenges and realities of living with and after breast cancer, caused me to change my priorities and to change career paths entirely”, she says. “When I was diagnosed, there was no internet and very little information available to women about the disease and best practice. There were still taboos about talking openly about the disease”.
Susan ultimately decided to change career paths and take up a position in breast cancer advocacy at Europa Donna: The European Breast Cancer Coalition. In 1999, she was appointed as Europa Donna’s first Executive Director, a role she served in for 22 years.
One of Europa Donna’s priorities is to ensure that all women in Europe have access to care provided in specialist breast cancer units and carried out according to EU guidelines.
For Susan a major challenge to this goal is that “across Europe there are many types of health systems managed and financed in a variety of ways. There are huge differences in breast cancer services being provided in these countries and even from region to region in countries”.
Recognising the challenge of different approaches to breast cancer screening, diagnosis and care across Europe, and the need to share good practices and establish standards, the European Commission set up the European Commission Initiative on Breast Cancer (ECIBC) in 2015.
Coordinated by the Joint Research Centre together with DG SANTE, the Commission’s department for health and food safety, the ECIBC appointed two working groups to contribute to developing guidelines and setting up a quality assurance scheme. Susan sits on the Guidelines Development Group. At Europa Donna, she had already made it a priority to set up training for advocates on evidenced based best practice so that they could advocate for these services directly in their countries. “This is why EU guidelines became so important as they gave us Europe wide standards that advocates and the lay public could understand and could advocate for in their countries”, she says.
The guidelines developed under the ECIBC are instrumental in providing coherent and high quality medical care and services to breast cancer patients.
Experts from different medical fields (e.g. epidemiologists, surgeons, pathologists, radiologists) have contributed to establishing these guidelines, along with input from patients.
The guidelines cross geographical boundaries as well, contributing to overcome the differences among national health systems and breast cancer care services across Europe, while presenting the latest evidence available in the form of recommendations and good practice statements intended to optimise patient screening and care.
For Susan, “having standards developed by experts in this way gives credibility that is essential to advocacy and to convincing stakeholders and policy makers. The ECIBC is developing quality standards for the entire spectrum of services with a methodology for monitoring; it will ensure quality assured services for women and patients, resulting in better outcomes for women and patients”.
The way ahead
“The ECIBC’s person/patient centric approach and its scientifically-based guidelines led to a high level of public confidence and trust”, Susan says. “It is essential for the ECIBC to continue updating the guidelines, inviting new patients to be involved, and enhancing its communication to all parties involved in breast care”.
The latest addition to the ECIBC’s toolkit is the quality assurance scheme with manuals for each main actor involved in the European quality assurance scheme implementation process.
So what’s next for Susan and Europa Donna? She notes that the ECIBC “will only have an impact if it gets implemented, so we will continue working on this objective. It is a key priority for all of our advocacy work today because it is essential to achieving our advocacy goals - to ensuring that women have access to the best, most up to date quality assured breast services from screening and early detection to diagnosis, treatment and appropriate follow up for breast cancer”.
The European Commission Initiative on Breast Cancer provides essential levels of quality care that are equally accessible across Europe.
Using the latest scientific evidence available, ECIBC seeks to offer to healthcare providers and women clear and independent guidance on screening and care.
Based on the ECIBC experience, the European Commission Initiative on Colorectal Cancer was launched in 2021. As announced in Europe’s Beating cancer Plan, work on guidelines for cervical cancer is also underway. A call is also currently open for accreditation of breast cancer guidelines.
Europa Donna is Europe’s breast cancer advocacy organisation, with member groups in 47 countries, and aims to ensure that all European women have access to accurate information and quality screening, diagnosis and treatment for breast cancer.
The organisation represents the interests of European women regarding breast cancer to local and national authorities as well as to institutions of the European Union.
- Publication date
- 20 January 2022