The Breast Cancer & COVID-19 Experiences Study
Ciitizen and its research partners created The Breast Cancer & COVID-19 Experiences Study in order to better understand the impact of the COVID-19 pandemic on breast cancer patients and survivors.
“Over the past year, the COVID-19 pandemic has had wide-reaching and lasting impacts on many aspects of healthcare, including cancer care,” acknowledges Alexa Berk, the Head of Research and Real-World Evidence at Ciitizen. “Studies have shown that the pandemic resulted in delays in screening and preventative care such as mammograms, as well as shifts in treatment patterns in oncology.”
The pandemic has taken a toll on breast cancer patients—from delayed and altered treatments to canceled screenings and doctor’s appointments; from missed celebrations and isolation from loved ones to unexpected challenges around emotional and mental well-being. Ciitizen recognizes the upheaval of the past year for breasties and wants to hear about your experience throughout this momentous period of change.
By sharing your unique breastie experience, you’ll help researchers analyze the impact of the pandemic on the breast cancer community as a whole. You’ll also be ensuring that Black women’s perspectives are included in this vital conversation!
How You Can Participate
The Breast Cancer & COVID-19 Experiences Study has a few simple parts. The first step is to sign up for the study (link at the end of this article) and to create a Ciitizen account if you don’t already have one.
Once your account is verified, you will be prompted to share your de-identified Ciitizen profile information with the study. Don’t worry, ‘de-identified’ means that Ciitizen removes common identifiers like your full name, your email, your telephone number, and your zip code before providing the data to study researchers like Alexa.
The last step is to complete a survey that will ask you to share your experience as a breastie during the pandemic. Plan for it to take around 20 minutes.
That’s it! With those simple steps, you’ve not only contributed to a more extensive and informed understanding of Black Breast Cancer, but also earned $200 in the form of either a gift card or a donation to a breast cancer advocacy group.
Your voice matters!
“This study is unique,” Alexa explains. “It captures these changes in breast cancer care directly through data derived from patient medical records using Ciitizen’s advanced medical record collection and extraction process, while also capturing the voice of the patient directly through a patient-reported survey that touches on important concepts such as quality of life, mental health and well-being, and the financial impact of the pandemic.”
We need to bring the powerful voices of Black breasties to center-stage. The experiences of Black breast cancer survivors—whether currently in treatment, in remission, or anywhere in between—have not been truly heard by the medical community or the scientific community yet. We can and will change that paradigm through research participation and data.
For Ricki Fairley, the kind of inclusive breast cancer research that Ciitizen is doing hits home. “As a Black Breast Cancer advocate, I participate in breast cancer research because I believe in walking the walk, especially when it demonstrates how patient-centered research can change the game. As a Black Breast Cancer survivor/thriver, I trust that clinical research participation is how we eventually get the gold-standard label that says this drug is made for black women. As a mother and grandmother, I know that we need to figure this out soon so that our babies don’t have to.”
Join TOUCH and our friends at Ciitizen in making the experiences of Black breasties heard loud and clear. Our voices are stronger together.
You can secure your spot in the study at: https://ciitizen.typeform.com/to/ye1ViAOo
As always, please reach out to us with any questions at [email protected] or 443-758-1924.
Emily Powers, TOUCHBBCA Health Storyteller