TOUCH, The Black Breast Cancer Alliance believes in the power of telling your breastie story. We also believe that the medical and healthcare communities need to do a better job of hearing and prioritizing the voices of the Black Breast Cancer community.
Our partner, Ciitizen, has helped create a study to do just that: listen to the diverse stories of breasties.
Without leaving the comfort of your own home, you can participate in a paid research study that wants to know: How has the COVID-19 pandemic impacted your life and your breast cancer care over the past year?
What is Ciitizen?
Getting all of your records in one place can be a frustrating and time-consuming process, with seemingly endless emails, phone calls, paperwork, signatures, and out-of-the-way trips to retrieve hard copies. Ciitizen founder and CEO Anil Sethi knows the medical record struggle firsthand. When his sister, Tania, was diagnosed with metastatic breast cancer, they saw 23 different specialists at 17 separate medical institutions in a span of just 6 months. Tracking down and collating her medical records from each visit turned out to be impossible, so none of these doctors or hospitals had Tania’s full health history. After Tania passed away in 2017, Anil finally got his hands on her complete health records and realized that the comprehensive data found there could have given her more time.
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So, he created Ciitizen: a completely free health technology platform that helps cancer patients to collect and digitize their medical records quickly and then store them in one organized and accessible place. Ciitizen takes away the burden of chasing down your health records and lets you spend that energy fighting and beating breast cancer instead.
TOUCH and Ciitizen share a fundamental mission: to eradicate cancer. In order to do that, we need cancer patients to understand the power and value of their health data. With all of your health information at your fingertips, you and your doctors are better equipped to make fully informed decisions about your care. More than that, taking control over your own health data also means that you can more easily participate in and advance important breast cancer research that will help to eradicate Black Breast Cancer.
Ricki Fairley, TOUCH CEO and TNBC survivor, uses Ciitizen to keep all of her health records in one straight-forward, accessible place. Now, when she goes to any of her doctors—her oncologist, her eye doctor, her dentist—she can simply hand over her phone and let them see the up-to-date lists of her current medications and treatments for themselves.
There are enough stressors during breast cancer treatment. Ciitizen and TOUCH believe that your health records shouldn’t be one of them.
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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
