Jackie Herman is the President & Director of Treatment Access & Health Policy of the Canadian Neuroendocrine Tumour Society and a participant in the INCA Boot Camp for Research Patient Advocates.

Why did you enroll in the INCA Boot Camp, Jackie?

I enrolled in the INCA Boot Camp to learn about different patient advocacy avenues that can have a real impact on enhancing neuroendocrine cancer research in Canada.  With the support of our community, CNETS is actively funding relevant research to the greatest extent we can.  However, as a patient community we would like to see more robust, timely and barrier free neuroendocrine research in our country.   There are many Canadian clinicians and researchers with an interest in this space and we are asking ourselves how we can support them and contribute to building up the neuroendocrine cancer research profile in Canada and work towards ensuring internationally recognized, cutting-edge treatments and diagnostics become standard of care.

Who do you perceive to be your partner in this effort to promote active patient involvement in NET research?

We have many partners in our efforts to promote patient involvement in neuroendocrine cancer research including researchers, clinicians, treatment centers, funding bodies, pharmaceutical industry, organizations like INCA and most importantly patients themselves.  I think that only with an open, multi-stakeholder approach will we be able to achieve our goals.  There needs to be a genuine acceptance of the value patients bring to the table and a truly inclusionary approach to patient participation in research.

The most important thing you learned from this month’s webinar.

The most important thing I have learned so far is that in many jurisdictions patient input and participation in research is respected and embraced.  In addition, one of the aspects of this learning that really hit home for me was the many ways in which patients can and should be contributing to research and at the different time points of clinical trials, including early in the design stage.  I had not envisioned such a robust role for patients in research before my participation in this boot camp.