Why oncology research 'by' and 'with' patients is important – Insights from the Symphony of Us project

We are happy to share our latest scientific article on patient and public involvement in oncology research:  

 “What added value does Patient and Public Involvement (PPI) in oncology research bring to cancer patients and what are the challenges in realizing it? A mixed-methods cross-sectional study in four PPI groups in Flanders (Belgium)” 

What is patient and public involvement in scientific research? 
Patient and public involvement in scientific research relates to research that is conducted not only 'for' but also 'by' and 'with' patients. Patients are not research participants here but rather counselors or perhaps even co-researchers. They can be consulted by researchers on an individual basis as 'patient experts', aiming to assess whether research sufficiently meets the actual needs of cancer patients. But there are also collective initiatives such as patient advisory boards in which groups of (former) patients or patient representatives are involved in assessing and shaping research within scientific institutions. 

Why is this important? 
Within the Symphony of Us project, we surveyed and interviewed members of several patient advisory boards in Flanders as well as their coordinators. We asked to what extent their participation in these boards is personally valuable to them, but also how it can benefit cancer patients in general.  

Our study shows that patient and public involvement clearly provides added value for board members as they can meet peers and learn about oncology along the way. However, they find it particularly valuable that they can also contribute to scientific research by assessing study protocols or patient-facing documents in terms of clarity and patient-centeredness. The coordinators of the boards also emphasize that patient and public involvement already provides clear added value here.  

 What developments are needed moving forward? 
In Flanders, as well as throughout Belgium, additional efforts are needed to strengthen the role of patient and public involvement in oncology research. Patient Advisory Boards, both in oncology and in other areas of clinical research, remain limited in number and are insufficiently funded. Membership also remains limited and lacks diversity in terms of cultural background and educational level. Finally, researchers do not always find it easy to connect with Patient Advisory Boards, and communication and feedback between researchers and these boards are not always optimal. 

This does not necessarily concern highly technical basic research that requires extensive biomedical knowledge, but rather psychosocial research or studies focusing, for example, on the difficult side effects of certain treatments or the experiences of people affected by cancer. In other words, research that can directly improve quality of life and focuses on what truly matters to cancer patients. 

In addition, advisory boards are still rarely involved in the dissemination of research findings. Yet they often maintain close relationships with patient organizations and can help make research results more accessible, relevant, and impactful. 

In the future, they could also play an important role by connecting researchers with the patient associations that are most relevant to their work. 

 
Read the full article on patient and public involvement here:  

Within the Symphony of Us, we involved patients as co-researchers. Read the full article here.