Is DBCG abreast of new developments?

The Danish Breast Cancer Group (DBCG) was established in 1977 by innovative and visionary clinicians and researchers diagnosing, treating and investigating breast cancer. The vision was to gather all existing expertise in breast cancer in a national multidisciplinary network to focus on optimal diagnosis, treatment and follow-up to these patients, preferably as part of relevant evidence-generating trials. The beginning to a comprehensive and large database was established, and since then nearly all Danish breast cancer patients have been registered with data regarding diagnosis, treatment and follow-up. As part of the multidisciplinary strategy, a DBCG Board was established to oversee DBCG-related strategies including approving national therapy guidelines proposed by DBCG committees for radiology, surgery, pathology, radiation therapy, systemic therapy, nuclear medicine, genetics and translational research. These committees have representatives from all relevant Danish departments treating breast cancer patients with the aim to constantly ensure consistency in diagnosis, therapy, follow-up and research of patients all over the country. In a worldwide perspective, DBCG is highly unique, since it is truly exceptional that experts from a whole country meet on a regular basis to discuss and agree on guidelines and develop and participate in trials. The structure of DBCG has subsequently served as the template for other Danish Multidisciplinary Cancer Groups.

Through this unique national multidisciplinary collaboration, DBCG has been leading in ensuring Danish patients diagnosis and therapy at the highest international level. So it is relevant to ask, if we can relax, lean back and simply congratulate ourselves on mission accomplished, or is it time to seize the torch and move forward? The DBCG Board does not think so. On the contrary, it is a clear goal to maintain the high standards and in addition constantly develop new treatment strategies to contribute to further enhancement of the guidelines both nationwide, Nordic and internationally. Therefore, at this 40-year anniversary the DBCG Board has identified challenges that need special focus in the next decade to maintain the high standard and quality of DBCG. Importantly, the strength of DBCG is highly based on the nationwide set-up, and since Denmark is a small country it is more important than ever that the nationwide aspect of DBCG is ensured in the future. Through the nationwide platform, the DBCG and its committees must support a multidisciplinary approach towards all breast cancer patients so they are treated according to DBCG guidelines and offered relevant trials. It is a DBCG goal that within the next decade all Danish patients operated for invasive breast cancer or ductal carcinoma in situ (DCIS) will be offered at least one evidence-generating trial, and such trials should be investigator initiated through the relevant DBCG committees and the DBCG Board. It is pivotal that these trials are offered to all patients, thus they must be open in all departments treating Danish patients. After sustained intensification for three decades, focus in the recent decade has shifted towards de-escalation of treatments, and as the prognosis fortunately has improved over the years due to early diagnosis in which implementation of nationwide mammography played a major role and due to improvements in treatment, it has become increasingly important to establish criteria for selection of the individual patient for certain therapies. Therefore, it is also a goal for DBCG to ensure that the DBCG initiated trials will explore criteria for selection of patients to more or less therapy, maybe even omission of therapy, which is otherwise provided today. These criteria may be focused on risk of recurrence, but they may also focus on the patient’s individual risk of late morbidity related to a certain therapy. In this way, studies and trials will be initiated examining the individual gain and harm from that therapy. Such data are highly needed to provide optimal information to the individual patient during the process of shared decision making.

During the recent decade more and more unnecessary obstacles have hampered fast access to individual patient and treatment data from the DBCG database. In the 1970s virtually no rules existed to protect patients when performing research, and fortunately international declarations and Ethical Committees have now provided guidelines for research, which also are incorporated in the DBCG rules. However, during the last decade more and more paper work has been requested from authorities to control what is being investigated. It has reached a point, where it may take more than 6 months from a researcher is ready to start a project before access to data is granted, and that is not acceptable. Therefore, together with the Danish Comprehensive Cancer Center (DCCC) DBCG will fight the increasing bureaucracy to the benefit of all cancer databases in Denmark. Any unnecessary obstacle encountered performing research must be identified and through DCCC Danish politicians must be made aware of this and action will be demanded.

Fortunately, improvements of therapy occur, as also new focus areas treating patients with invasive breast cancer or DCIS emerge. As part of the Danish National Cancer Plan IV much interest is now paid to research in late morbidity, but data on late morbidity have until now not been part of routine reporting to the DBCG database. Therefore, expanding the database with such data has very high priority in the years to come, and new technologies should be implemented as part of this, for example, it should be possible to report patient reported outcome directly to the database. DBCG will adopt artificial intelligence and support machine learning and other new technologies to obtain data from the patients in an efficient way. Furthermore, a constant focus will be maintained on collecting missing data from the Danish departments, because high quality research is impossible if the data quality is poor.

In conclusion, the DBCG has a high focus on maintaining and further develop the current level of all aspects of patients treated for breast cancer or DCIS. Every effort will be done to develop and support investigator initiated trials as well as also nationwide prospective cohort studies. The overall goal is to offer every Danish patient diagnosis, treatment and follow-up at the highest international level in all parts of Denmark. Detailed data related to the patient’s course in the hospital and during follow-up will be collected to document the current status at any time. The DBCG committees and Board will always strive to be one step ahead and ensure a systematic and thorough implementation of new standards in Denmark to the benefit of our patients.