Ron Hollander, INCA Honorary Member, INCA Past-President and participant in the #INCABootCamp

Why did you enroll in the INCA Boot Camp? 

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 program 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.

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

I believe the time is ripe for us to work with all of the key stakeholders in NET research – our medical/research organizations, the regulatory bodies and industry leaders – as key partners. They all exhibit a shared understanding and growing receptivity for the importance of active and informed patient engagement to identify needs for research and design measures to maximize quality of life. We need to ensure that we have patient advocates who can communicate their perspectives effectively in these collaborations to have significant involvement and influence.

The most important thing you learned from a webinar.

There are tools for quality of life measurement that have been used in NET cancer research but they are either not NET-specific or not recently updated.  The debate at the 2018 ENETS meeting revealed the need for an updated and NET-specific initiative that I believe should include robust patient involvement! INCA can play an important leadership role in this process.