The INCA Boot Camp October session covered the reasoning behind today’s evidence-based patient advocacy: why it is crucial to collect quantifiable community-led data and how to communicate these results to create beneficial impact for patients.
Jan Geissler, Patvocates/EUPATI, spoke at length about the instrumental significance of surveys to better understand patients’ needs and challenges, on how to demonstrate arguments backed up by survey results in order to influence the regulators and payers effectively, to be able to influence the politicians to create policies for patients not just about patients. The session also gave floor to INCA to present its evidence-based patient advocacy achievements. Teodora Kolarova, INCA Executive Director, presented the efforts of the global NET patient community and the results achieved with the global surveys INCA conducted in the past 5 years: the Global NET Patient survey, the Unmet Needs survey and SCAN. Abstracts, posters, and medical articles based on these data throughout the years managed to enrich the understanding of NETs and NET patients’ needs, especially within the healthcare community by being presented at different medical conferences around the globe.
You can read all INCA publications & articles based on NET patient data on the INCA website here.
The Boot Camp for Research Patient Advocates managed by the INCA Research Committee is a 9-month online training program (June 2020-February 2021) for NET patient advocates representing member organizations of INCA.
The program aims to educate leading NET patient advocates, who would further share their knowledge in their local communities.