The 12th INCA Global NET Patient Advocate Summit took place in Segovia, Spain, on 9th – 10th September 2024. Over 30 representatives of INCA member organizations across the globe, together with the ENETS and NANETS leaders, as well as neuroendocrine cancer advocacy experts from UK and USA, elaborated on the achievements and future projects to improve NET awareness and access to optimal diagnostics and care, and advance patient-driven research.
In the course of two inspiring days, the focus was on INCA’s activities along the main strategic pillars: Information and Awareness on NETs, Improving Access to Optimal Treatment and Care, Advancing Research in NETs, and Evidence-Based Advocacy. 24 INCA member organizations shared their best practices and lessons learned in these areas to inspire productive discussions on collaborative approaches and new ideas.
Where We Are and Where We Want to Be: INCA’s Achievements and Commitments in Strategic Areas
The INCA Summit 2024 kicked off with 2023-2024 highlights of INCA’s achievements, as well as future plans in raising NET awareness via regular communication and NET Cancer Day campaigns, launch of new educational projects and capacity-building programs for stronger patient advocacy, growing membership and partnership networks. The overview was presented by Stephanie Alband, INCA President, and Teodora Kolarova, INCA Executive Director.
Raising Awareness Globally: Insights from INCA’s Successes and the Impact of Synergy with NET Medical Community
INCA Communications Committee Chair Duncan Macduff reported sustainable growth in the reach of target group audiences via all INCA media channels and presented the forthcoming multilingual information resources.
It is essential to ensure optimal convergence of the perspectives and priorities of patient and medical leaders to be able to collaboratively drive forward key activities. Dr. Rocio Garcia-Carbonero, Chair of the European Neuroendocrine Tumor Society (ENETS), presented the impact of joining efforts with INCA towards improved NET awareness among healthcare professionals and more efficient support for patients and caregivers.
Strategic brainstorming in groups on ways to connect with various stakeholders took place.
Improving NET Patients’ Access to Optimal Care: Educating Primary Care Physicians to Reduce Time to Diagnosis
INCA Access Committee Chair Dr. Sugandha Dureja presented the first-of-its-kind global project for educating primary care physicians (PCPs) through a tailor-made short video course, which is CME-accredited and developed by an international panel of NET experts, PCPs and patient advocates.
Think NENs Global Educational Program for PCPs is launched in 6 languages (English, German, French, Italian, Spanish and Portuguese) and is free to use by PCPs from all over the world.
To empower INCA members in getting this innovative resource out, member organizations from Australia, UK and Italy shared their experience and lessons learned from launching NEN educational programs dedicated to primary care physicians and other healthcare professionals.
Meredith Cummins, CEO of Neuroendocrine Cancer Australia, presented the NET educational modules available for HCPs and nurses. Meredith pointed out that a variety of forms, including patient interviews, work better in delivering the message: “Be more aware of cluster of symptoms and investigate accordingly – think about NET in those patients who have chronic symptoms which aren’t explained otherwise.”
Catherine Bouvier, CEO of Neuroendocrine Cancer UK, outlined the local HCP education strategic approach and implementation stages, rolling out the ‘Spotlight on neuroendocrine cancer’ – a multi-pronged campaign, in cooperation with Primary Care Society of Gastroenterology, with GP education providers, GP knowledge-boosts podcasts, information packs and cards for different HCP specialties.
Dr. Luciano Licciardello, Board member, NET Italy ETS, presented the Italian experience with PCP education. The organization started with local workshops, which were upscaled to CME-accredited online training.
Group discussions to exchange ideas for reaching out to medical associations and specialists, as well as promoting the resource to patients followed.
NET Research and Clinical Trials: Meaningful Patient Involvement Makes a Difference
INCA Research Committee Chair Meredith Cummins presented INCA’s portfolio of projects aiming at empowering NET patients to collaborate with NET researchers on more patient-centric NET research. The INCA website features NET researchers’ insights video library that will be enriched with more resources on radioligand therapy, lung NETs, pheo/para and translational research. Consistent usage of the NET clinical trial finder tool from all over the world was reported, as well as 12% growth in impressions in research social media campaigns.
Dr. Thorvardur Halfdanarson, NANETS President, gave an inspiring presentation on NEN epidemiology and models of involving patients in NET research. He pointed out that increase in incidence is seen across all NET types, showing that NENs are getting more common. Dr. Halfdanarson noted that patient input in trials fosters a sense of urgency and purpose, improves the design of trials and enhances the focus on the goals of the research.
Evidence-Based Advocacy: Empowering Advocates With Tools to Drive Change
One of INCA’s strategic imperatives is to empower its member organizations to be better and stronger advocates for NET patients.
INCA Advocacy Committee Chair Catherine Bouvier presented the highlights of INCA projects dedicated to facilitate more efficient advocacy efforts. An advocacy & policy toolkit, a coaching program in progress and a series of capacity-building webinars in specific areas are among the tools for driving change at INCA members’ disposal.
Valuable guidelines on practical approaches to creating advocacy resources were given by Prof John Ramage, King’s Health Partners NET Centre. He presented models of work for data collection and offered strategic advice on publications in medical journals.
“Advocacy for the NEC community – how are we doing and how can we improve” was the final presentation given by neuroendocrine carcinoma patient advocate Susan Meckler Plummer. Her deeply moving talk about the dire need for more advocacy for the NEC community resonated strongly with all Summit participants.
The 12th INCA Global NET Patient Advocate Summit was full of creative energy, inspiring both INCA members and partners for more meaningful achievements.
INCA is grateful to NET-ESPAÑA for being such a supportive host of the 2024 INCA Summit.
Huge thanks to all INCA members and distinguished invited speakers for the indispensable contribution to the 12th INCA Global NET Patient Advocate Summit!
INCA is deeply grateful to its sponsors – Novartis, Ipsen, Boehringer Ingelheim, ITM, RayzeBio – a Bristol Myers Squibb Company, Camurus, Curium, SERB Pharmaceuticals, HRA Pharma, Esteve.