It’s National Previvor Day. I had to catch myself after posting ‘Happy National Previvor Day!’ on Facebook. Don’t get me wrong, I think it’s great there is a day devoted to Previvors. I certainly celebrate my identity as a Previvor, I just don’t think a day to raise awareness about being a Previvor really helps me much. I am not an awareness raiser.
This is why I have become a part of the Medicine X community. I like solving problems more than I like raising awareness. Medicine X is this amazing program at Stanford that is all about fostering design thinking and empathy in medicine. ePatients are the core of the program. This is the place where I found my voice. Every year, it’s like Christmas for me to go to this conference, and it helps me recharge my batteries as an advocate for data-sharing in the Previvor community. Because let’s face it: most people don’t like to talk about data sharing. We have a handful of us and we try to stick together. I find other people who are facing similar challenges in their own patient communities. And people who understand the value of social media in finding support through the difficult choices that Previvors face.
The first time I learned about the word ‘ePatient’ was on Twitter back in 2013. I saw a picture of a guy holding up a sign saying ‘Gimme My Damn Data.’ It caught my eye and I wanted to know…what’s that?! What I didn’t understand back then was that other patient communities were also fighting for the rights to their data. Not just to be geeky. Because that’s the only way we can ensure autonomy, understanding of our privacy rights, and ways to contribute to research that helps create better options. Of course, I immediately thought about the rights to my genomic data. Because even though our genes are no longer patented, the company that held those patents doesn’t publicly share our community’s mutation data for BRCA1 and BRCA2.
We need more Previvors who identify with the ePatient movement. I want to learn from scientists out there who are studying BRCA1 and BRCA2, but I also understand that it is on our community’s data that papers get published and new therapies get made. So…why not treat us as partners?
Medicine X one of the rare conferences that really ‘gets’ patient-centered design. It’s ironic that most health conference don’t even let patients in the door, let alone celebrate their voices as speakers, designers, and researchers. So many initiatives out there and conferences like to talk the patient engagement talk, but it still feels like the ivory tower and the medical industry talking about patients without patients in the center of things. This year, I love something that Hugo Campos said to me….patient engagement is good, but autonomy is better.
So…on National Previvor Day, I want to celebrate Medicine X for giving me a way to find my voice, and my autonomy as a Previvor.