At the recent International Neuroendocrine Cancer Alliance (INCA) Summit, patient groups had the opportunity to connect and collaborate with clinical and research leaders from across the world. This was the first summit to take place after the completion of INCA’s strategic plan, which centers on a vision that all patients globally should have access to the best care and most current research.
At the meeting, INCA added two new countries, India and Ireland, to its membership, which now totals 20 organizations. I was privileged to lead the meeting in my capacity as President of INCA, on whose Board I serve on behalf of NETRF.
Seven NET leaders-physicians and researchers- from six countries – Australia, Germany, Italy, New Zealand, Singapore, and Sweden – participated in the meeting, The focus of the discussions was primarily on collaborations between patient groups and clinical and research leaders.
Bertramm Wiedenmann, MD, PhD, Professor of Internal Medicine and Gastroenterology, at the Charité – Universitätsmedizin Berlin and Treasurer of the European Neuroendocrine Tumor Society (ENETS), gave remarks about INCA and ENETS joining forces so that the patient receives the best quality of care in terms of diagnosis and therapy. “I think we should work together to make sure that the information is understandable to the laymen and not as complex as when we discuss it in our medical jargon,” said Dr. Wiedenmann in his opening address to INCA members. “We at ENETS should work with you to set up a proper place for INCA to develop a structure where the patients’ demands can be satisfied, not just the scientists’ ones, as it stands now. We should come up with a position, a written paper, where we publicize the priorities we are focusing on: quality of diagnostics and therapeutics for every NET patient.”
Ideas for the focus of an INCA partnership with NET clinical/research leaders included a number of possibilities including:
1. Crucial elements (“standards”) for the care of NET patients and the availability (or lack thereof) of essential elements/treatments in various countries/regions. (e.g. the need for a multi-disciplinary team with NET expertise, the availability of PRRT, etc.);
2. A shared assessment of “unmet needs” of patients that must be addressed: e.g. information needs, medical clinical needs, research needs, other needs;
3. Identifying core elements of NET centers of “excellence” and potentially a second tier of centers of NET “competence” around the world. Exploring mechanisms for “certification” globally and providing consistent information to guide patients in their NET journey;
4. A global assessment of research currently underway to foster global understanding and support advocacy to address the needs for more funding;
5. The role of patients in setting research priorities and in facilitating the drug development process;
6. A global registry for NET patients to compile data and tumor specimens to support research and improved care;
7. Creating international forum(s) of patients and clinicians/researchers (e.g. starting with joint panels of patient advocates and clinical/research leaders at ENETS’ international conference) to exchange ideas, set mutually supported priorities and assess progress.