MAKE ME COUNT: IT'S TIME TO COUNT ALL PEOPLE WITH BREAST CANCER IN CANADA

A new Rethink Breast Cancer campaign calls for comprehensive data collection to improve evidence-based patient care and health equity

TORONTO, Oct. 1, 2024 /CNW/ - To mark the beginning of Breast Cancer Awareness Month, Rethink Breast Cancer is launching a new campaign that shines a light on the ways people living with breast cancer are adversely affected when they aren't counted, and health systems have only fragmented and incomplete cancer data. While data collection and analysis may seem far away from individual experiences, the #MakeMeCount campaign creatively humanized this issue, featuring the experiences of five people currently living with breast cancer to highlight how improved data collection can drive better patient outcomes and health equity.

You deserve to be counted. Did you know current cancer data collection in Canada is incomplete and fragmented, specifically around rates of recurrence of metastatic breast cancer, race, and social determinants of health? Nicole shares why this important to her as a black woman who has been diagnosed with breast cancer.

You deserve to be counted. Did you know current cancer data collection in Canada is incomplete and fragmented, specifically around rates of recurrence of metastatic breast cancer, race, and social determinants of health? Vesna shares why this important to her as someone who is living with metastatic breast cancer.

"We live in a digital age and detailed data is being collected in so many parts of our lives. Yet, when it comes to cancer data – when the stakes are high – we've fallen behind. We only ever hear about high-level statistics and we're missing the inequities and unique challenges people experience," says MJ DeCoteau, executive director and founder of Rethink Breast Cancer. "We're calling on elected officials and decision makers to support the recommendations made in the Pan-Canadian Cancer Data Strategy and expedite the rollout – because people with cancer don't have time to lose."

Currently, on a national scale, Canadians have a snapshot of how many people are diagnosed with breast cancer every year (30,500 in 2024) and how many people will die from the disease (5,500).

But more meaningful and comprehensive cancer data collection that could support evidence-based, patient-centric treatment and care is incomplete and fragmented. Specific areas for improvement are around race and ethnicity, social determinants of health and rates of cancer recurrence (if the cancer comes back).

Vesna Zic-Côté from Ottawa was first diagnosed with early-stage breast cancer at age 38. She navigated standard treatment, but the cancer not only came back but spread to other parts of her body. However, the recurrence isn't tracked in Canada's cancer data. Now, at age 49 she's living with metastatic (or stage 4) cancer, but because her diagnosis was more than five years ago, statistically she's captured as a 'survivor.' This is just one example of how Canada's current data collection system falls short.

"I'm a survivor who will be in treatment for the rest of my life. I have heavy side effects and I'm living on borrowed time," says Vesna. "So often we hear 'early detection saves lives,' and that's very important, but some of us will have a local or metastatic recurrence. Shouldn't the cancer data reflect that? Shouldn't we all be counted?"

Vesna is one of the five people featured in the #MakeMeCount video series, now online at <rethinkbreastcancer.com>.

#MakeMeCount Video Content:
Click the following names to watch these videos of breast cancer patients who want to be counted in Canadian cancer statistics:

• Vesna is asking why living with metastatic breast cancer is not being counted
• Nicole is asking why breast cancer data doesn't include people's racial identities

Visit <rethinkbreastcancer.com/makemecount> to view the full #MakeMeCount video series and meet the others.

How Canadians can get involved

Cancer is a disease that affects nearly everyone, directly or indirectly, and Rethink is asking Canadians to call on elected representatives and decision makers to improve how Canadian Cancer data is collected:

1. Sign and share the petition at <rethinkbreastcancer.com>
2. Watch and share the video stories of people living with breast cancer to help make them count
3. Join the movement and post #MakeMeCount on your social channels (Instagram, X, Facebook)

Rethink's Priority Areas for Cancer Data Collection

The pan-Canadian Cancer Data Strategy was released in 2023 by the Canadian Partnership Against Cancer and the Canadian Cancer Society. Rethink supports the Strategy recommendations and has identified the following priority areas:

• Data around the recurrence of breast cancer is currently not collected in a consistent and harmonized manner, leaving us without an understanding of the number of people whose cancer recurs, and also, without an understanding of the number of people living with metastatic breast cancer in Canada.  
• There is a lack of robust and complete data around race and ethnicity, making it impossible to understand the impact of breast cancer, and other cancers, on specific populations and disparities within racialized communities.  
• The impact of the social determinants on cancer outcomes is not captured due to the incomplete data and analysis. As such, we cannot understand nor address, the impact of cancer accurately.

About Rethink Breast Cancer 

Rethink Breast Cancer is a Canadian charity known for making positive change and rethinking the status quo when it comes to breast cancer. Rethink educates, empowers and advocates for system changes to improve the experience and outcomes of those with breast cancer, focusing on historically underserved groups: people diagnosed at a younger age, those with metastatic breast cancer and people systemically marginalized due to race, income or other factors. We uplift, inspire and most importantly, rethink breast cancer to help people live better and live longer. www.RethinkBreastCancer.com

SOURCE Rethink Breast Cancer

For more information or to set up an interview, please contact: [email protected], 647.290.7573