A Joint
Effort by NET Patient and Medical Leaders to Identify and Address Issues That
Impede Optimal Care and Research
We are so grateful to the ENETs advisory board who for the
second year supported the INCA/ENETs join patient symposium as part of the main
scientific meeting. The number of participants was a significant increase on
last year which indicated the importance of hearing from patients. The key
areas covered were addressing the “patient information gap”, how can we improve
the information that is being delivered to patients at time of diagnosis and
throughout their treatment journey, how to improve access to treatments such as
PRRT and how to involve patients in research from trial design to clinical
trials. As so clearly put by Dr Ben Lawrence ‘….we would not design a treatment
plan without consulting the patient, thus we should not design research without
including the patient…..’
Speakers and panelists included:
Prof Martyn Caplin (Royal Free Hospital UK)
Simone Leyden (INCA President)
Ron Hollander (Past President of INCA)
Teodora Kolarova (Executive Director of INCA)
Kate Wakelin (NET Nurse Unicorn Foundation Aus)
Dr Ben Lawrence (Auckland NZ)
Josh Mailman (USA)
Cathy Bouvier (NET Patient Foundation UK)
For the full program please click here and we
look forward to reporting back next year on how these issues have been
addressed.
