The Annual INCA/ENETS Symposium on March 15th, 2024, showcased the joint strategy of patient advocates and ENETS experts in reaching out to educate primary care physicians and other medical specialists in neuroendocrine neoplasms detection and patient management.
The symposium was part of the 21st Annual ENETS Conference, taking place in Vienna and online.
It was moderated by Stephanie Alband, INCA President and Executive Director of Pheo Para Alliance, USA, and Prof. Eva Tiensuu Janson, Chair of ENETS, Sweden.
First sneak preview of Think NENs Global Educational Program for Primary Care Physicians
Prof. Dermot O’Toole and Teodora Kolarova, INCA Executive Director, presented the new e-learning course Think NENs Global Educational Program for Primary Care Physicians – a joint effort of INCA patient advocates, prominent NEN specialists and primary care physicians. The program is to be launched in 2024 in 6 languages: English, French, German, Italian, Portuguese and Spanish.
Prof. Dermot O’Toole, the leading consultant on the expert team behind the Think NENs Global Educational Program for Primary Care Physicians, presented the rationale of the content development focused on providing digestible knowledge on diagnostic awareness, diagnostic pathways and managing patients in general practice. The content was elaborated and reviewed from the lenses of the primary care physicians by a scientific committee representing patients with NEN (an international panel from INCA), NEN experts from around the world (from ENETS, NANETS and CommNETS) and PCPs from Turkey, South Africa, and United Kingdom, as well as an emergency medicine physician from the United States.
Teodora Kolarova gave a sneak preview of the e-learning course platform in English, going through the sections and the educational videos. She also explained how the program will be promoted among primary care physicians globally. INCA partnerships with medical societies and the World Organization of Family Doctors (WONCA), as well as INCA member organizations’ local cooperation with organizations of general practitioners will be vital for reaching the target audience.
Best practice in provision of an educational program for HCPs from Australia
Meredith Cummins, CEO of NeuroEndocrine Cancer (NECA) Australia, presented the Neuroendocrine Cancer Educational Modules for Healthcare Professionals, run in Australia. The educational program is implemented in partnership with the Royal Australian College of General Practitioners and is CPD-accredited. The educational modules were so far completed by the impressive number of 3708 healthcare professionals. The successful outcome is based on mobilization of patients and partnerships in awareness campaigns and targeted promotion among the medical community. NECA will continue to develop more educational resources for healthcare professionals and impactful public awareness campaigns.
Engaging second-line non-NEN healthcare professionals
Prof. Martyn Caplin elaborated on the challenges of engaging non-NEN healthcare professionals in NEN education. Care systems and care pathways are often not aligned for people with rare diseases. The average time to diagnosis for all rare diseases is a period of 5-6 years, after multiple visits to physicians, multiple diagnostic procedures, misdiagnoses and inappropriate treatments. Prof. Caplin noted that second-line physicians don’t even think about rare diseases in differential diagnosis due to lack of awareness and insufficient time to search for resources. He pointed out that further education of physicians is needed to recognize or at least think of rare diseases and optimize patient pathways to ensure timely referral for appropriate diagnostics and care. These and other solutions such as provision of patient-friendly information resources, promotion of advocacy groups and mentorship of non-experts among others could lead to improved NEN diagnostics and care. Prof. Caplin also highlighted the potential of AI for improvements in primary and secondary care.
Working as a global community to promote better understanding of NENs
Mark McDonnell, INCA Past President and Chair of NET Patient Network, Ireland, presented the structure of partnerships in the global NEN community that focuses on impactful promotion of better understanding of NENs. Patient groups around the world support patients locally, develop awareness campaigns and national educational programs. INCA as the global voice for NEN patients provides multilingual information and templates, advocacy methodology resources, multilingual educational programs such as Think NENs. Partnership with medical societies and clinicians via joint initiatives and participation in conferences, as well as introduction of patient stories, bring the patient perspective forward. All efforts are focused on advocating before policy-makers and governments to have rare disease policy in place, to ensure more NEN specialist centers are available and visible, to align pathways to refer patient to specialists.
The panel discussion encompassing the solutions to be sought on policy level highlighted that statistics and registers have to be updated to present adequate data on incidence of NENs and that optimizing patient pathways to ensure timely referral for appropriate diagnostics and care is crucial for improving patient outcomes.
Think NENs Global Educational Program for Primary Care Physicians is supported by a grant from the Victory NET Foundation.