INCA’s position on the patient advocacy role has been published in the latest autumn edition of the reputable European Society of Endocrinology (ESE) newsletter. In this feature article, INCA Executive Director, Teodora Kolarova, elaborated on the importance of working towards closing the gap between the patient and healthcare professionals’ perspectives to ensure better quality of care for NET patients around the world. The Unmet Needs Survey results clearly capture the discrepancies between patients’ and healthcare professionals’ expectations of the quality of the information provided. Building on these findings, INCA addressed three key points of interaction between patients, advocacy leaders and medical professionals, which need improvement: the quality of information provision, including the adoption of a patient-centered approach in medical decisions, involvement of patients in research at the design stage and access to the highest standards of care. We need to understand each other’s perspectives better to work together more effectively for improved diagnosis, care and research.
The reasoning behind the need for enhanced collaboration is highlighted by INCA: better understanding of patient priorities and the practical impact on the disease on patient everyday life would lead to improved design of clinical trials, thus providing for more efficiency and more funding opportunities for advancing research in NETs.

You can read the full article here.