Over 150 conference participants, including some of the thought-leaders in the NET medical community attended the Second INCA/ENETS Symposium on March 9, 2018. The significant increase in the number of people interested in the topics discussed compared to last year, clearly indicated the growing appreciation of the role patients can play. The focus was on unmet needs in the “Patient Pathway” – the patient information gap, ways to improve the information delivered to patients throughout the treatment journey, as well as access to appropriate care. Another key topic was engaging patients in research from trial design to clinical trials.
A message so clearly put by Dr. Ben Lawrence from New Zealand ‘….we would not design a treatment plan without consulting the patient, thus we should not design research without involving the patient …’ resonated very strongly with the audience.
INCA and ENETS leaders have pledged to form task forces to identify concrete steps that can be taken to address the issues that impede optimal care and research, and to invite the other NET medical societies (NANETS, COMMNETS, APNETS) to join INCA.
INCA is very grateful to ENETS who for the second year supported the INCA/ENETS join patient symposium as part of the main scientific program.
Speakers and panelists included: Prof. Martyn Caplin (Royal Free Hospital UK), Simone Leyden (INCA President), Ron Hollander (INCA Immediate Past President), Dirk Van Genechten (INCA Board Member), Teodora Kolarova (INCA Executive Director), Kate Wakelin (NET Nurse Unicorn Foundation Australia), Lisa Plum Munk (NET Nurse, Denmark), Dr. Ben Lawrence (oncologist and NET researcher, New Zealand), Josh Mailman (USA).
The patient advocates and INCA members in attendance also participated in a networking luncheon after the Symposium where posters on NET Cancer Day 2017 were on display.