Breast Cancer Awareness Month: Collaboration between clinical researchers and patients much needed

Breast Cancer Awareness Month is an international campaign organised every October to raise awareness about breast cancer and support women to reduce their breast cancer risks, be screened and seek medical attention if a suspicious lump is detected. According to the World Health Organisation, in 2020, there were 2.3 million women diagnosed with breast cancer and 685 000 deaths globally. As of the end of 2020, there were 7.8 million women alive who were diagnosed with breast cancer in the past 5 years, making it the world’s most prevalent cancer.

The REBECCA project kicked off in April 2021, and its main objective is to improve clinical research on Complex Chronic Conditions that challenge the Quality of Life of breast cancer patients. REBECCA will also provide support to breast cancer patients by improving healthcare outcomes after the primary breast cancer treatment. The project will work with over 650 patients from three countries, Norway, Spain and Sweden, to shape future guidelines and practices for post-cancer treatment.

To mark Breast Cancer Awareness Month, we have asked Ms Roelinde Middelveld, a breast cancer survivor, to share her story and her take on how to help create patient-centred care, ultimately leading to improved treatment of breast cancer patients. Ms Middelveld currently works as a Research Coordinator at the Department of Physiology and Pharmacology at Karolinska Institutet, Stockholm, Sweden. In her spare time and on a voluntary basis, she works closely with Breast Cancer Society Amazona, a breast cancer association supporting those who suffer from breast cancer as well as their close relatives and helping spread knowledge about breast cancer and the importance of an early diagnosis. Read Ms Middelveld’s story below.

My breast cancer awareness started in the autumn of 2015 with a big bang, when not only did I get my own diagnosis, but my mother got hers within a week of mine, and one of my best friends hers only a few months before. All of a sudden breast cancer dominated my life, on many levels. Getting a cancer diagnosis changes everything, affecting family and work life, and puts your life in a whole different perspective.

Experiencing breast cancer myself and seeing from very nearby how it can terminate the life of a loved one, means I have breast cancer awareness not just in October, but all year round.

The three weeks between the initial diagnosis and surgery were the most difficult and nerve-wracking of my life. The relief after the surgery, when I heard that cancer had not spread, was immense. The following six months, consisting of chemotherapy and radiation therapy, were tough, but bearable, knowing that I could continue my life afterwards. The support that my mother and friend provided, and that I could give them, going through the same thing, made a huge difference.

My mother is now free from the disease. But my friend, who had metastatic breast cancer, sadly passed away only recently, after six years of continuous treatments and struggle. Experiencing breast cancer myself and seeing from very nearby how it can terminate the life of a loved one, means I have breast cancer awareness not just in October, but all year round.

With a background in medical research, having a PhD in biomedicine and working as a project manager in the asthma research area at the Karolinska Institutet in Sweden, I took an interest in my own breast cancer treatment and experiences with healthcare. This led to becoming a member of the breast cancer patient involvement group at the Karolinska University Hospital in my spare time, and getting more involved in the breast cancer patient organisation Amazona and their collaboration with the clinical researchers in Stockholm area, as a volunteer. This led to Amazona getting asked to join the EU project REBECCA and providing the patient perspective.

Through my work at the Karolinska Institutet, I had been involved in various asthma projects that included collaboration with patients. But I had also experienced that the distance between researchers and patients can be quite big, many times because they do not really speak each other’s language. However, I have also seen good examples of such collaborations leading to very fruitful results.

Through Amazona’s participation in the REBECCA project, we have started to build up a constructive way of collaborating with researchers.

In my mind, for patient-researcher collaborations to be successful, the researchers need to listen better to patients and communicate their research in more lay terms, explaining why what they are doing will be of benefit to patients. Patients need to become better at communicating from a more general perspective and collecting their fellow patients’ input, rather than focusing on their own individual problems. They should also have an understanding that there is no such thing as a quick fix, as research and healthcare questions mostly are very complex and take time to be implemented.

Through Amazona’s participation in the REBECCA project, we have started to build up a constructive way of collaborating with researchers. The key in this is to have the right staff, who have an understanding of both sides. Breast cancer patients have experiences and a voice that should be heard, and by channelling this voice in the right way, it is my belief that this will ultimately result in better treatment, care and survival.