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Decentralized Medical Information & Machine Learning

Discussion in 'General ME/CFS Discussion' started by undiagnosed, May 1, 2016.

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Would you be interested in using this application and would you be willing to run ZeroNet?

  1. Yes, I would use the application and I am willing to download and run ZeroNet

    2 vote(s)
    40.0%
  2. Yes, I would use the application, but I am not willing to download and run ZeroNet

    0 vote(s)
    0.0%
  3. No, I would not use the application

    1 vote(s)
    20.0%
  4. Not sure (please post a comment with details if selecting this option)

    2 vote(s)
    40.0%
  1. undiagnosed

    undiagnosed Senior Member

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    I've been looking into developing a decentralized medical information sharing application. It'd be like a peer to peer version of PatientsLikeMe with more flexibility. You can find my initial thoughts here. There was also an interesting discussion related to this topic here.

    I have been looking into designing a site for ZeroNet as a means for accomplishing this. ZeroNet enables development of decentralized websites where the files are shared over bittorrent. The idea would be that the site would contain everyones data and everyone who visits the site would download the data. You would by definition have access to all the data and could carry out your own research. My hope is to apply machine learning algorithms to the dataset to try and discover new insights. I would like to get an idea of how many of you would be interested in using this application and would be willing to download and run ZeroNet. I would appreciate your participation in the poll and any feedback you may have.
     
    ScottTriGuy likes this.
  2. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

    Messages:
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    Toronto, Canada
    Great idea

    But I chose "not sure" coz I would want to feel confident about privacy.
     
  3. *GG*

    *GG* Senior Member

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    Concord, NH
    Is this an app only for phones or can you do it on your computer as well?

    GG
     
  4. undiagnosed

    undiagnosed Senior Member

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    It would only be available on Linux, OSX, and Windows computers, at least at first. There is a plan for running ZeroNet on phones, but it's not ready yet.
     
  5. undiagnosed

    undiagnosed Senior Member

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    Hey @ScottTriGuy, it looks like you accidentally chose No or didn't vote since there are no votes in the "Not sure" category. What specific concerns do you have about privacy? There are a couple of different options to address various privacy issues. My initial thought was just not to put any identifying information such as names, specific locations, etc. in the system. Additionally, people may want to hide their IP addresses by using Tor if there is concern that could be traced to them.
     
  6. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

    Messages:
    1,063
    Likes:
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    Toronto, Canada
    I've now voted for 'not sure' - and am unsure if I previously voted or not (so I may have voted twice).

    I think you just addressed my privacy concerns in your reply.

    I'm not sure how much I would use the application to do my own research as I tend to focus my limited energy elsewhere, and I find there a lot of smart sciencey people in the ME community who will uncover and discern patterns looooong before I would - but I would like to contribute my data so they can do their thing.
     
    Kati likes this.
  7. undiagnosed

    undiagnosed Senior Member

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    Cool, sounds good. Yes, your data is valuable even if you yourself are not interested in doing research. You may also find the application useful for organizing your records in one place. I know it's been helpful for me as each doctor I go to has their own system and nothing is shared effectively. By putting everything together, I can communicate my case more clearly and ensure that nothing is left out.
     
    ScottTriGuy likes this.
  8. undiagnosed

    undiagnosed Senior Member

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    I started a project here called p2pdx (for now, name ideas welcome) to implement what I've proposed here. I'm still getting familiar with ZeroNet so there's nothing usable yet. You can follow updates at the project page if you're interested and I'll post here with milestone updates.
     
    ScottTriGuy likes this.

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