President and CEO, Susan G. Komen
One of the most remarkable qualities of the breast cancer community is its willingness to help others who are facing the disease today or might in the future. Millions of people in our community now have the opportunity to do that, and in my view, it’s a game-changer.
The app I’m referring to, introduced today at the Apple Spring Forward event, has a fairly long name: Share the Journey: Mind, Body and Wellness after Breast Cancer Treatment. But it has a very simple goal: to help millions of people understand and manage effects of their breast cancer treatment, while contributing to a body of knowledge that can smooth the journeys of those to follow.
Like so many groundbreaking developments in science, this app started with a simple observation. Dr. Andrew Trister, a Seattle radiation oncologist, often treated breast cancer patients who told him they were experiencing confusing symptoms after completion of their treatments. Many were having trouble sleeping, experiencing mood swings, fatigue and cognitive problems. In numerous cases, these symptoms were affecting their ability to work or care for their families.
They also told him they felt out on a ledge, without support. And since there were few good, large studies that addressed these specific issues, many physicians felt (and still feel) unequipped to help their patients in meaningful ways.
Dr. Trister saw the opportunity to change the story for women and men with breast cancer. He reached out to Dr. Stephen Friend, president of Sage Bionetworks, a Seattle-based nonprofit biomedical research organization, who also wanted to help. And the Share the Journey app was born.
With funding from the Robert Wood Johnson Foundation, Friend and Trister enlisted the expertise of nationally recognized cancer researchers: Dr. Patricia Ganz of UCLA, Dr. Ann Partridge of Dana-Farber (both members of our Komen Scholars advisory panel), and exercise expert Kathryn Schmitz, Ph.D., MPH, of the University of Pennsylvania.
These experts also worked with Dr. Susan Love (who with Komen and the Young Survival Coalition introduced the Health of Women Study (HOW) in 2013 to track people after treatment), and Dr. Judy Garber of Dana-Farber, another of our Komen Scholars.
I mention the Komen connection because we’re very proud that we’ve been asked to help spread the word and enlist participation in the HOW study and this one – along with many of our partners in the Metastatic Breast Cancer Alliance: breastcancer.org, the Avon Foundation for Women, and the Dr. Susan Love Research Foundation.
To that end, I’m asking our community to download – and use – the Share the Journey app, available in the iTunes store at this link.
When you do, you’ll be encouraged to keep a personal diary and use the app to track five of the most common after-effects of breast cancer treatment: fatigue, sleep issues, cognitive issues, mood and exercise.
Data from the app can be collected, in a completely confidential way, for important studies that will give researchers the information they need to identify patterns and make recommendations on how we can ease the after-effects of breast cancer treatments.
The benefits are two-fold: By keeping a consistent diary, you may see patterns that you might not have noticed before. You may find out, for example, that on days you do yoga, you feel better. Or on days when you don’t exercise, you feel fatigued. This information can help you set personal goals and strategies that can improve your well-being.
Of course, the potential benefits to medical science are huge. When we can get a very large global community of women reporting their symptoms, we can get a better understanding of what women actually go through after treatments. This gives us better insights into what’s causing these symptoms, and will help develop recommendations – based on scientific evidence – to improve quality of life.
I’ve long been an advocate for the use of data carefully obtained from patients to help solve important issues in medical science. My hope is that the collaboration of breast cancer organizations, and the input of millions of women and men in our community, will lead to better, targeted, “person-centered” care for breast cancer patients, even as we continue to fund medical research for better treatments, cures and prevention of this disease.
This is an opportunity for anyone experiencing symptoms – and even those who are not – to do something for themselves, and help others.
Share the Journey is open to women in the U.S. between the ages of 18 and 80, with or without a history of breast cancer. A Spanish-language version of the app and efforts to expand the study to additional areas around the world are under development. Sage Bionetworks and its collaborators are also working to extend the study to include men who have been treated for breast cancer.
Barbara Jacoby is an award winning blogger that has contributed her writings to multiple online publications that have touched readers worldwide.