World Cancer Day 2020
Intersecting cancer research and cancer awareness: The “STORY Study”
In 2019, I had the opportunity to mark World Cancer Day with an inaugural blog for CAPT sharing my experiences as a researcher to cancer patient to cancer researcher. I am honoured to be back on February 4th, 2020 World Cancer Day, this time sharing one of the research studies that I have done and reflecting on the intersection between cancer research and cancer awareness.
This is the story of the STORY Study (Shared experiences of diagnosis and treatment of young-onset colorectal cancer in an on-line community).
Going through my colorectal cancer diagnosis, its treatment, and now navigating survivorship would not be possible without my COLONTOWN® community. This is a “secret” Facebook group where patients with colorectal cancer (and their caregivers) can ask questions, share concerns, and support each other in ways that only people who “get it” -because they are going through similar experiences – can.
For colorectal cancer awareness month, in March 2019 one of the COLONTOWN® administrators initiated a post asking community members diagnosed with young-onset colorectal cancer (or below the age of 50 years) to share their experiences, that is, their ‘yCRC story’. The intent was to gather a yCRC story for every day of the month of March with the hope of raising awareness of this disease. As a community member, I watched in awe as this thread grew such that in one day, the goal of 31 yCRC stories had been exceeded. In fact, the thread was revised to create sets of stories – for example Set 1, story 1 until story 31; Set 2 story 2 until story 31, and so on. By the time I had the chance to share my own yCRC story, I was on se 3.
As a health outcomes researcher, I could not help but ask, wouldn’t it be great if there was a way to capture what just happened with this thread in COLONTOWN® and share it with the cancer community and wider community? This question, led to a direct message to the administrator who initiated the post to propose that we design a research study that would capture what happened in that thread and invite them as a patient research partner, a consultation with our ethics board, a blessing from the COLONTOWN® founder and mayor, and the launch of the STORY Study in May 2019.
Over one month we gathered 120 stories and applying qualitative analyses to stories shared found themes that captured experiences with yCRC including being misdiagnosed, lasting effects of yCRC and its treatment, and importance of connecting with others. I won’t share any more as the open access manuscript will soon be published by the Journal of Psychosocial Oncology Research and Practice. This paper truly represents a meaningful partnership between researchers (my team and myself) and patients in the design, conduct, and soon, dissemination of research that matters to patients, and in this case inspired by patients. I invite everyone to please stay tuned as I will be sharing it through my social media channels including my Twitter (@maryadevera) and Instagram (@mary.fullofgrace).
Dr. Mary De Vera is a pharmacoepidemiologist and assistant professor in the Faculty of Pharmaceutical Sciences at the University of British Columbia, where she holds a Tier 2 Canada Research Chair in Medication Adherence, Utilization and Outcomes. Dr. De Vera completed a BSc degree in biochemistry at UBC and MSc and PhD degrees in health care and epidemiology from the UBC School of Population and Public Health, as well as post-doctoral fellowships at the University of Montreal’s Faculty of Pharmaceutical Sciences and UBC’s Faculty of Pharmaceutical Sciences.