Living With CFResearch

A Young Mom is Exploring BlockChain Technology

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.

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  1. Kate
    December 9, 2017 at 8:04 pm

    Are you using a “green” blockchain system? These technologies are enormous power hogs and are expected to use more than the world’s current power usage by 2020. I like the idea of the technology, but not the environmental consequence, as most power is made by coal-burning plants, contributing to air pollution. As someone with a lung disease, I am wary. See this article:

    • Brooks
      December 18, 2017 at 7:13 am

      Indeed, Bitcoin does use a lot of energy to support its worldwide network, though the counterpoint is, so does Visa, Mastercard, Paypal, and all other third-party payment providers, providing similar services. Andreas Antonopoulos explains the counter-point very well in this Q&A video:

      Additionally, the cryptocurrency community is aware of this situation, and many of the other cryptocurrencies are exploring other means of securing their networks that don’t need as much energy (proof of stake systems rather than proof of work), so there’s the potential for them to use a lot less energy in the future (while it’s very unlikely that Visa/Mastercard’s global energy use would decline in the future). That’s comparing to existing payment processing, which is not the use-case this article is examining, but if other utilities for Bitcoin and other blockchain technologies are found, then that energy cost is supplying more and more utility, making it more efficient over time simply by its usage.

  2. Imogene
    December 10, 2017 at 5:54 pm

    Thanks Kate! I am a newbie exploring Blockchain. This is a much needed discussion. I am impressed with the power and the security Blockchain affords. I wonder what a “green” Blockchain system is? I am only observing this as a way patients can share their medical records, genotype and phenotype data and bring it safely to market. There are solarcoins and then this energy use was predicted in Moore’s law. Yes, we have to figure out how this can be done safely and efficiently. Great points!

  3. Brooks
    December 18, 2017 at 7:26 am

    Imogene, this is an interesting concept; I’ve been working with Bitcoin and other cryptocurrencies as a developer since 2012, and while the blockchain technology is a new concept that can be a paradigm shift for many industries, I’m not sure the specific use case you’re talking about is the best fit for blockchain technologies.

    The benefits of a blockchain ledger in general is that it can be public, global, censor-resistant, and verifiable. This makes it good for things like money that you don’t want corrupt individuals/organizations to alter, or thieves to steal.

    The specific problem you mentioned is difficulty “encouraging parents to submit data for registries” due to being too busy, which seems to focus on an idea that it’s too time-consuming to submit patient data with current technologies. Blockchain-based technologies do get some speed advantage over other database systems in that they’re global, so the data moves around the world rapidly, but someone still needs to input the data into the blockchain. Currently, that would mean the patients submitting data would still need to type it into their computer to get it sent off to whatever global registry is collecting that data. So, I don’t think the time-savings for the data-gatherer is where you’d find most benefit.

    I’m a father of a child with CF, and so am very interested in any advancements in medical research that can help progress toward a cure, and we have participated in a few clinical trials already to try and assist in that area. Where I think blockchain technologies can fit into this puzzle the best is first getting an EMR system to store their data in a blockchain. If every clinical visit all my child’s lab results were entered into a blockchain-based record, by default it could be shared just with the hospital/clinic that entered it, but then the data could be shared (by the patient, using commands sent to the blockchain) with researchers or other hospitals who help with that patient’s care. If the data’s already there in the network (put there by doctors and nurses who would have done the data entry anyway to enter it into a separate system), the blockchain’s censor-resistance and verifiability would be very beneficial in sharing that data with only those it’s supposed to be shared with, and continuing to provide access as new data was added.

    • December 22, 2017 at 2:40 pm

      Hi Brooks: Please let’s talk. I may have this all wrong! But I would love to speak with someone who can help us!
      I know that patients would have to input the data…but it could also be done with devices.
      I am thinking that Blockchain may have the technology to PAY the patients for their data.
      Please reach me at [email protected]