A breast cancer diagnosis is devastating. Breast cancer is a major challenge to women’s health with more than 280,000 new patients per year. At least 40,000 of these women will die, but nearly all will experience anxiety and pain, many for years. While some patients participate in clinical trials to help determine the best treatments for breast cancer and some donate their tissue or money to advance medical research, the research community has not figured out how to get the majority of women diagnosed directly involved in reducing the impacts of breast cancer. We aim to change that by establishing the paradigm of patient driven research. Each breast cancer patient has a story. Each story will help us better understand breast cancer. We want to make it easier to tell and share each story.
To achieve this, we are developing a system to give patients the ability to keep track of their own medical details and start sharing this information with breast cancer researchers. Components of the final system will include (1) a back end database to house data on hundreds of thousands of women with breast cancer (2) genetic testing to link women at high risk of developing breast cancer with additional screening that could save their lives (3) interaction software allowing patients to use the clinical system to compare their treatment and responses to other women with breast cancer (4) a molecular characterization platform to facilitate personalized medicine and allow researchers to examine the heterogeneity of breast cancer. All of this effort will be for nought without the capability to allow women to contribute their data. We will build a tablet based app to allow women to enter, track, and share their clinical histories with breast cancer researcher.
The Clincal History App will initially be deployed on iOS for iPhone/iPad and will allow basic entry of diagnosis and treatment information with standards to facilitate the most common components of the breast cancer diagnosis and treatment. For patients who have access to their medical histories in electronic form, the system will facilitate upload of these information rich documents to the central data base for display and searching within the app. Patients who succeed in entering their data will no longer need to carry the enormous documents with their medical history, but will have these data organized in one place. Additionally, patients will have complete control over how their data are shared with the breast cancer research community. This App is the first step in giving the breast cancer community the ability to actively participate in research, allowing everyone with the disease to help find a cure.
Why is this important?
The most complicated step in implementing Personalized Medicine is accessing and making sense of clinical records. In our patient powered model, the development of tablet based apps that store simple features of breast cancer patients’ medical histories is the first step. Clinical features such as age at diagnosis, tumor receptor status, node status, tamoxifen treatment, chemotherapy treatment, metastatic presence, surgery type, radiation treatment, and family history will be easy to input along with notes at each doctor visit and a set of common questions that patients can choose to discuss with their oncologist or surgeon.
In the future, the system is intended to evolve to help patients to understand their own medical histories and treatments, equipping them to do so even while facing the significant challenges of complex treatments.
Who will benefit?
Any patient with breast cancer may ultimately see benefit.