At TETRIS, patient engagement is not an add-on to research. It is an essential part of the project’s vision. Through our Patient Advisory Board, we work closely with breast cancer patients and patient advocates from different European countries to ensure that patients’ needs, experiences and expectations help guide the development of our research.
To highlight the importance of patient participation, we recently conducted a series of video interviews with members of the TETRIS Patient Advisory Board during the 3rd TETRIS General Assembly in Stockholm. Starting with representatives the two Patiens Associations, from Bröstcancerföreningen Amazona Stockholm and Associazione Cuore di Donna going to the and testimony of Raffaella Baldi and Enrica Globo, these conversations provided valuable insights into why patients choose to contribute to research and how their experiences can help shape more meaningful healthcare innovation.
From Patient Advocacy to Research Collaboration
In our first interviews, Britt Sandberg and Marianne Wolfbrandt from Bröstcancerföreningen Amazona Stockholm shared their perspective on what it means to be part of the TETRIS project and why collaboration between patient associations and researchers is so important. Their message was clear: patients bring unique knowledge that complements scientific expertise. By working together, researchers and patient communities can ensure that research addresses real-world challenges and priorities, ultimately leading to outcomes that are more relevant and beneficial for people living with and beyond cancer.
Making Research More Relevant Through Patients’ Perspectives
The conversation continued with Guiana Baiguini and Myriam Pesenti from the Italian patient association Associazione Cuore di Donna. Both highlighted how patients’ perspectives can provide researchers with valuable insights and new data, helping translate scientific knowledge into outcomes that can genuinely improve patients’ quality of life and well-being and emphasised that patient contributions can support healthcare professionals by helping them communicate complex scientific information in a clearer and more accessible way. Better understanding, better information and greater confidence throughout the care journey are all benefits that can emerge when patients are actively involved in research.
Giving Back to Research
Another powerful perspective came from Raffaella Baldi, who reflected on the impact that scientific research has had on the lives of breast cancer patients over the years. Having benefited from advances in diagnosis and treatment, she expressed her desire to give something back by contributing her experience and making patient data available to researchers. Her testimony illustrates one of the core principles behind patient engagement in TETRIS: patients are not only beneficiaries of research, they are active contributors to progress. By sharing their experiences and perspectives, they help create knowledge that may improve care for future generations of patients.
Developing Digital Twins with Patients, for Patients
The final interview featured Enrica Globo, who spoke about the importance of involving patients in the development and testing of digital twins for breast cancer research. According to Enrica, patient participation can help researchers ensure that these innovative tools reflect real experiences, real needs and real treatment journeys. She also highlighted how TETRIS has the potential to support future patients in making more informed decisions while helping clinicians better understand patients’ needs throughout the care pathway. Her perspective reinforces the project’s commitment to developing technologies that remain firmly centred on the people they are intended to serve.
Patients at the Heart of TETRIS
Together, these interviews demonstrate the value of meaningful patient involvement in research. Whether through advocacy, personal experience, shared data or direct participation in project activities, members of the TETRIS Patient Advisory Board contribute knowledge that helps make research more inclusive, relevant and impactful.
We would like to warmly thank all members of our Patient Advisory Board for sharing their experiences, insights and commitment to improving the future of breast cancer care. All interviews are available on the TETRIS YouTube channel and on the dedicated Patient Advisory Board section of the TETRIS website, where visitors can hear directly from the patients and patient representatives who are helping shape the future of patient-centred research.
