Kimmie Ng and Candace Henley celebrate the value of the patient advocacy voice in cancer research #IWD2021

11 March 2021
Kimmie and Candace 2

Patient advocate Candace Henley and physician-scientist Kimmie Ng are members of the Cancer Grand Challenges OPTIMISTICC team. Together they have helped to set up the programme's flagship study, MICROCOSM. 

An unprecedented study, MICROCOSM (MICRObiome of Colorectal Cancer: Longitudinal Study of Mechanism) collects long-term health information and samples from more than 2,500 people across North America and Europe, who are receiving chemotherapy or immunotherapy for their colorectal cancer.  

For International Women’s Day and our Cancer Grand Challenges Women’s Week, we caught up to discuss working together across specialisms, the importance of the patient advocate voice and why they #ChooseToChallenge. 

The slogan of International Women’s Day 2021 is #ChooseToChallenge. What does this mean to you? 

Kimmie: Although it is amazing that there is a day to honor the achievements of extraordinary women everywhere, the very fact that we even *need* a special day designated for this purpose highlights the ongoing challenges that women face in regards to equity in the workplace – particularly in science and medicine. The slogan #ChooseToChallenge inspires me to continue to strive to improve the care of my cancer patients, elevate other women scientists and physicians, and tread a path towards a more inclusive and equitable world for my two young daughters.  

Candace: #ChooseToChallenge means to me that change happens when we challenge the status quo, push beyond the boundaries, and shatter the glass ceilings that still exist. It means to challenge ourselves to stay the course with what we want to achieve, to drown out the negative voices that say “you can’t”, and do! Do it to the best of your ability; even if you don’t succeed the first time, try again because I’ve always been told “nothing beats a failure but a try”. Failure happens when you don’t challenge or try. 

Could you elaborate on your collaboration to set up the MICROCOSM cohort?  

Candace: MICROCOSM is a great opportunity for the patient voice to be represented. Our experiences are all different but as a collective, we can share what works for the patient community, adding our thoughts to make sure it’s relatable and relevant. Representation is important, it gives the patient voice a seat at the table and has shown that it’s just as important as the science. We have a PhD in experience – that offers a valuable opportunity to share in and guide the work being done.  

Kimmie: The development of MICROCOSM has been a true multidisciplinary effort – clinicians, epidemiologists, bench scientists, project managers, research coordinators – and I cannot overstate the importance of patient advocates and incorporating their perspectives and priorities in this process. In MICROCOSM specifically, our patient advocates contributed significantly towards the design of our diet and lifestyle questionnaire and stool collection kits, ensuring that the language was lay friendly and easy to understand and that the process of filling out the questionnaire and collecting samples was as simple as possible.  

It has been so much fun and very exciting to work together with this wonderful team to push the boundaries of what we can understand about the microbiome in bowel cancer. 

Who inspires you? 

Candace: Dr Kizzmekia Corbett is an African American scientist who is right on the frontlines of the global race for a SARS-CoV-2 vaccine. She’s part of a team at NIH that worked with Moderna, the pharmaceutical company that developed one of the two mRNA vaccines that has shown to be more than 90% effective.  

Kimmie: There are so many people, but the two women who come to mind right now are Ruth Bader Ginsburg and Vice President Kamala Harris, both of whom “chose to challenge” the biased norms of their time and therefore paved the way for women and girls everywhere. I am also inspired by all of my fellow female scientists who are dedicating their talents, insights, and passions every day towards improving the lives of our cancer patients while also juggling the responsibilities of family and personal life. 

Find out more about the OPTIMISTICC team.