2018 EUROPEAN WINNER
Most valuable patient initiative or service
LivingWithNETS — Kanga Health & Ipsen
Ipsen ‘Nets’ Patient-Focused Award
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An innovative website that helps identify patients with neuroendocrine tumors (NETs) and then offers day-to-day support for living with the condition has been named the Most Valuable Patient Initiative at the eyeforpharma 2018 European awards.
Living with NETs (www.livingwithnets.com) was developed by Ipsen and Kanga Health using insights from a multi-nation survey and telephone interviews, and guided by patient co-creation workshops. The site includes a symptom checker tool that address issues around diagnosis, aiming to drive earlier, qualified leads into specialized clinics.
NETs are relatively uncommon and hard to detect, with patients often presenting with multiple, everyday symptoms, making it difficult for primary care physicians to identify. The website has already attracted 100,000+ visits, with 200,000+ pages viewed.
Collecting the award, Ipsen Chief Patient Affairs Officer Isabelle Bocher-Pianka, said: “This project was important because we wanted to change the lives of patients suffering from neuroendocrine tumors. We learned from them that it can take seven or eight years before they are diagnosed – they have a mix of symptoms that make it difficult for a layperson to work out what they have. Then they go to Google and get totally lost, so they a lot of lose time until they are eventually referred to an endocrinologist.”
Living with NETs offer a wide range of support to patients. “It is a complete tool – firstly it helps to identify these early symptoms, but, more importantly, it is a full guide to living with the disease,” said Bocher-Pianka. “The site contains a lot of advice given by patient themselves but also in doctors’ testimonials, which are helping a lot. We worked extensively with the patients and we followed their journey from pre-diagnosis all the way to life with NETS.”
“I am extremely proud for Ipsen and proud for the patients with NETs who helped us to co-create the program and proud for my team too,” she said.
The expert panel of judges, representing companies from across the industry, singled out Living With NETS, praising the way the team collected patient insights, identified unmet needs and provided individualized support. Highlighting the work with patients and patient groups to co-create the tools, they said: “The website and its content are easy to navigate and are a great example of providing support to patients throughout their treatment journey in a personalized way,” said the judges.
The other finalists for the Most Valuable Patient Initiative award were:
EINSTEIN Junior from Bayer AG – printed educational materials for children, teenagers and parents to improve recruitment to a clinica trials in venous thromboembolism
HealthBeacon – a ‘smart’ sharps bin designed to provide patients with an elegant, safe and connected way to dispose of used injectors.
MOSKI-TOON, a cartoon to fight malaria from Sanofi – an animated cartoon designed for sub-Saharan African children to raise awareness of malaria.
Optisoins from Sanofi – an oncology patient monitoring program aimed to facilitate communication
between patients and hospital oncology teams.
For more information on the eyeforpharma awards, visit the website.