Mark McDonnell is the Chairperson of NET Patient Network, Ireland and an #INCABootCamp participant.
Why did you enroll in the INCA Boot Camp?
I believe very strongly in the need for patient involvement at the core of research that is ultimately designed to better or lengthen our lives as patients. Too often patients are consulted in the latter stages of research trials for tacit approval to show to regulators that patients have been involved. The INCA Boot Camp is an opportunity to learn about research methodology, to understand the tools used in research, and to absorb the nomenclature and terminology used. I believe that the Boot Camp will empower and enable me to engage with pharma companies and researchers to better promote patient engagement in research and so to better consider the expected outcomes from that research for patients.
Who do you perceive to be your partner in this effort to promote active patient involvement in NET research?
INCA is a fantastic and very active promoter of patient engagement in all aspects of medical care, including research. The opportunity INCA provides to learn from and work with the member organisations of INCA provides great partnership possibilities and this is the best way to raise the way in which patient organisations are viewed by clinicians and researchers. As patients, we need to work together to ensure our voices are heard and that we are involved and engaged in all stages of research.
The most important thing you learned from a webinar.
There have been so many benefits from the INCA Boot Camp so far. Most beneficially is probably the connections made with other patient advocates who feel strongly about patient engagement in research. I have also learned a lot about quality of life and qualifying such along with very useful tools and methodologies for reading research papers, understanding statistics and how to better advocate on behalf of patients.