As a patient advocate and a Previvor, I'm so excited to be a part of this announcement of the Breast Advocate App.
Back in 2004, I had VERY limited options for connecting to research, people and options when I received by BRCA1+ results. I didn't have the luxury of being able to reach out to an extensive group of doctors and women to ask questions, seek opinions and benefit from shared decision making. I lacked the knowledge and feeling of empowerment I needed. I think that is why I waited so long to make any decisions about my high risk surgeries.
In 2013, I joined a group on Facebook called Beyond the Pink Moon, which was, at the time, an International private support group for women who are high risk, Previvors, Survivors and supporters. The group was amazing in sharing stories, supporting each other and sharing some research based evidence. It was in this group that I finally found the doctor I'd use for my surgery, because of how many people were talking about his work and their satisfaction. That was exactly what I needed.
Fast forward to 2015, when I was finally planning my surgery. Beyond the Pink Moon had grown into an all encompassing network of patients, supporters and medical professionals, all working together to help anyone and everyone make the best decisions for themselves. At the same time, my Twitter network was growing and growing, connecting more patients, supporters and medical professionals. The "Shared Decision Making" network was amazing and becoming a norm, quickly. No longer were people stuck with one doctor making all the calls and leaving patients with no other information, references, options or input. It was increasingly evident that patients needed each other, they needed to ask questions from multiple sources and they needed to come to decisions with all the information possible.
Now, I'm so happy to say, that the answer to my one wish during all of this, is coming to fruition. An App is in development, where everyone can get research based evidence, surgery and reconstruction information and options, expert input from a network of highly regarded doctors (including my very own Dr. Chrysopoulo), and a support network of other people walking in your shoes, no matter what part of the journey you're on. The amazing part, is while this App is in Beta, YOU have a voice. Sign up and tell them what YOU want in an App. What would have or will help you in your journey? This App wants to be the resource for connecting our large community and allowing patients to feel empowered with knowledge and resources, no matter what decision they make.
Please share this news with anyone and everyone who has been searching for more information, support and community in what can be a very difficult and lonely journey.