Guest Blog: Harnessing the Power of People to Improve Health Outcomes for Everyone
By: Jerome Jourquin – Senior Director, Data Science, and Shannon Woodworth – Senior Manager, Program Content, Susan G. Komen®
Patients want to be active participants in research and their own care, controlling how their data are used. But today, researchers are often limited by data from a small subset of patients, which does not represent the full spectrum of breast cancer experiences. People who have been minoritized and historically marginalized continue to be underrepresented in research. This lack of diverse participation has led to a gap in knowledge and real-world evidence, limiting our ability to practice precision medicine and optimize care for everyone diagnosed with breast cancer.
Komen launched ShareForCures®, an inclusive breast cancer research registry, to connect researchers with insightful information from people who have or have had breast cancer. Through ShareForCures, participants can collaborate with researchers, sharing their health data with them to fuel groundbreaking research.
Breast cancer is unique and manifests differently in each person, influenced by their unique biology and experiences. By building a robust and diverse registry, Komen aims to conquer metastatic and aggressive breast cancers, eliminate disparities and improve health outcomes for everyone.
Those who have or have had breast cancer can easily opt-in ShareForCures to participate in research. By joining a community of others just like them, dedicated to accelerating the discovery of cures, participants can impact health outcomes, ensuring that research findings are based on more representative, more diverse data, and that they are applicable to a broad population. The more data collected from a diverse population of breast cancer patients, the better researchers can understand the disease’s complexities and variations and the more effectively patients can be treated.
The importance of participating in research is best described by ShareForCures participants. One participant, Ellen, shared her thoughts on the importance of this registry. “We live in a world where we give out our data every day, but providing my medical records for this important research could make a real impact,” she explains. “If you want to make a difference, you need to trust the organization you’re sharing with. For me, Komen is the place to start. I trust them and believe they can harness this information for the greater good.”
Another member, Cyndi, was initially hesitant to share her data. “I didn’t expect to live this long, so I didn’t feel comfortable sharing my experience,” she shared. However, after finding stability in her metastatic breast cancer (MBC) treatments, Cyndi’s perspective shifted. “When I hit my five-year mark, I realized I wanted my story to be part of the research. Knowing that my data could contribute to finding long-term treatments and possibly a cure is incredibly meaningful.”
There are several ways you can support ShareForCures and help advance breast cancer research:
- JOIN: If you have or have had breast cancer – Your participation is invaluable in creating a comprehensive data set that can drive meaningful discoveries.
- SHARE: Spread the word about the importance of diversity in breast cancer research by sharing this blog – Spread the word about the significance of diverse people participating in research to your community or network.
- PROMOTE: Talk with someone you know who has or has had breast cancer about ShareForCures – Encourage them to contribute their data by joining ShareForCures and becoming a part of the community participating in this transformative initiative.
The power of health data lies in their ability to transform the way we understand and treat diseases like breast cancer. Through ShareForCures, Komen is providing an easy way for people to lead the charge in leveraging their data to fuel research, improve patient care and save lives.
For more information on how you can get involved, visit Komen’s ShareForCures website. Together, we can make a difference and save lives.
Susan G. Komen® is a member of the National Health Council. For more information on NHC membership, please email membership@nhcouncil.org.
