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.
Why Patient Research Boot Camp?
One of the core pillars of INCA is NET Research. This can come in a variety of ways; through education of what research is to our patient community, encouraging unique and practice-changing trials with our medical professionals and industry partners or helping to promote active trials for recruitment. We all know how important an increase in quality research will be to our goal, of earlier diagnosis and ultimately a cure of our global NET community.
The Research Committee is pleased to announce the launch of our inaugural INCA Research Advocate Boot Camp. Bringing together passionate NET patient advocates from around the globe, our online training modules designed by our delivery partners, Patvocates, take our participants through the many facets of research including drug development, statistics and why they matter, PROMS (Patient Reported Outcome Measurements) and QOLs (Quality of Life) and evidence-based patient advocacy. We are so proud of the 18 participants and know that they will take what they have learnt and put it into practice in their own countries.
We wish our class of 2020 all the best!
Boot Camp Participants
NeuroEndocrine Cancer Australia
Neuroendocrine Cancer UK
NET Research Foundation (NETRF)
NeuroEndocrine Cancer AU
Linda Rose Krasnor
Pheo Para Alliance
Pheo Para Alliance
NET Patient Network – Ireland
My motivation to participate in the INCA Boot Camp comes from a place of wanting to do more to help Canadian neuroendocrine cancer patients gain access to treatments and to support more research into neuroendocrine cancers. At CNETS we are currently doing the best we can with the knowledge and resources that we have but in the absence of more money to directly fund research projects, we are asking ourselves what else can we do raise the profile of neuroendocrine cancer research in Canada and promote it, thereby directly benefiting our patient community.
On behalf of INCA, I have had the opportunity to convene and/or participate in the kinds of collaborative meetings that lay the groundwork for more patient engagement in research. As a result, I see the need for patient advocates to have clear understanding and consistent use of the tools needed to effectively communicate and influence regulators, industry and medicine in these processes. I would hope that the Boot Camp would not only provide this knowledge, but also help us develop a network of engaged advocates who can share best practices, learn from each other, and support effective patient engagement in their respective countries.