I me Julia at the Global Genes Conference in California last September. She and I share an interest in BlockChain technology. For me, it is a secure way to share data and get paid. Through our survey, we found that 90% of you (530+participants would like to be paid for your data!) This blog is from Julia and she gave me permission to share it with all of you. I am the mother of a 3 year old daughter with a rare disease called Shwachman Diamond Syndrome (SDS). We live in the UK, where 59 patients have been diagnosed. When we received the diagnosis, my natural instinct was to learn as much as I could about the disease and to try to get involved with other parents, doctors, researchers, to see how I could help move research along. I became a Trustee of the newly resurrected UK SDS charity earlier this year, and my main focus has been to set up a registry. My professional career is in venture capital, which gave me a natural insight into the importance of data.I knew that establishing a registry would be paramount as funding is directly correlated with the number of diagnosed patients, and that capturing ongoing data is key to unlocking understanding about the evolution of the disease, which ultimately will lead to the development of therapeutics. As for Blockchain, I have been learning about this technology from an innovation and investment perspective, and it became very interesting to me when I started thinking about it in the context of personal health data and in particular, that of rare diseases. I have noticed how hard it is to encourage parents to submit data for registries, which is understandable when they are busy caring for sick children. I am curious about if and how blockchain technology might make it easier for patients to participate. I am also interested in the ownership of that data, as currently it is not readily communicated who owns the data and how it might be commercialised. Blockchain may be a way that patients can participate in the value generated from all the research that is taking place.
