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Collecting data from users

Discussion in 'General ME/CFS Discussion' started by optimist, Jul 11, 2014.

  1. optimist

    optimist Senior Member

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    Hi!

    Just an idea that dropped on me. I am not sure if such a think exists, but wouldn't it be great if there was a sort of web portal dedicated for ME/CFS sufferers where you could register a profile and provide extensive data about your condition and what measurements has proven helpful, what has not helped, and what made you worse, at what level, how and what it did, and so on.

    Thinking of supplements, medications, treatments, activities and just about anything. It would have to be as much data as possible - both of the treatment (like type, amount, length, frequency) and about your condition (severity, length, male/female, age, country, possible contributors to developing the condition and so on and so on).

    From there on one could build sort of big data statistics from many users (hopefully) and find common denominators, patterns, and perhaps map out areas of interest to investigate further both for sufferers, and for medical researchers.

    The idea dropped on me some minutes ago, and I have not thought through all possibilities, but got a bit exited and just wanted to get some feedback from you :)
     
  2. barbc56

    barbc56 Senior Member

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    There's a site called Patients Like Me and if memory serves right, it does this. I also remember something mentioned on Cort's site.

    Sorry, too tired at the moment to look these up.

    Welcome to Phoenix Rising!!:)

    Barb
     
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Healclick is doing this too, but you have to join.

    Sushi
     
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  4. optimist

    optimist Senior Member

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  5. Raindrop

    Raindrop Senior Member

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    I know there is something called Heel Click where they get a lot of specific data from you
    on your symptoms etc. and then they put people into categories where you can communicate with different
    people in your same type/level of illness and compare what has worked/not worked etc.
    I have been meaning to join this for some time. It would also be helpful to hear from anyone else who
    has had experience with it as well. Anyone?
     
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Joey is the founder of Healclick.

    Sushi
     
  7. Raindrop

    Raindrop Senior Member

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    Yes, thanks.....Do you have experience with this group?
     
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Some, but Joey has posted a lot about it here. You can find it with a search of his posts.

    Sushi
     
  9. optimist

    optimist Senior Member

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    I generally do not register with services that states in their TOS that they can change the TOS when they want and how they want, as I find it very scary (it's like saying yes to anything):

    F.eks. Google who wrote this:

     
    roxie60 likes this.
  10. WillowJ

    WillowJ Senior Member

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    @mojoey is a founder of HealClick.
     
  11. barbc56

    barbc56 Senior Member

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    @optimist
    At least you read the disclosure. Many people don't do this, including myself.

    However the disclosures are written in legalize and are lengthly. Hardard enough for most and even harder for people who are ill, have learning disabilites or even need or can't find her reading glasses as well as the two backup pair for this type of situation. This last statement is just a hypothetical example. :D

    I wonder if this is legal advice generally given to people who have sites on the internet. Especially the states where suing is almost a national sport.

    I have a solution. How about a one word capitalized sentence that reads:

    GOTCHA!

    I was going to add three more words but for the sake of brevity as well as the possibility of having my post moderated, I will let people speculate.

    Okay, time to go to bed as now I am getting silly and too tired to edit.

    Barb
     
  12. optimist

    optimist Senior Member

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    @barbc56 Hehe, no I didn't read through :) I've just learned where to look first. This blind, comatose "I accept" clicking of our society today has enabled the web companies to more or less write what they want in their terms of service.

    Most people just have no clue what they are agreeing to, but "trust" that it must be OK... which, as you can see with what I posted from Google, is far from it. They could just as well have written "We reserve the right to take your most private emails and publish them in the news papers with photos from your private collection"...
     
  13. optimist

    optimist Senior Member

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  14. Kina

    Kina Moderation Team Lead

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    We are talking about changes to the rules mostly in the TOS. Like if something new arises that we haven't come across. We have not changed anything since 2012 when we amended them to add a few. We wouldn't just arbitrarily change a rule, being a non-profit any rule change or changes to the TOS would have to be passed by the Board.

    It is a standard statement and most websites have it. Any changes we would implement would only add to Phoenix Rising as a non-profit.

    We will never change any of our privacy rules -- we do not and will not give out private information --ever. We actually go to great lengths to protect our member's privacy.

    We might tighten up the Copyright rule to make it easier for members to follow. We might add to another rule but as far as doing something negative -- no way.

    By the way, we do have a "Moderation" forum where this kind of thing can be addressed rather than taking a thread off-topic.
     
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  15. optimist

    optimist Senior Member

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    @Kina
    Thanks for sharing this! I am thankful for the reassuring statements you provide here, and sharing about your position regarding the way you protect users privacy!

    Just to clear things up: I am not suspecting that this forum/organisation will misuse this freedom which is being required. My point is just that the statement is in itself pretty "scary", and it does demand a lot of trust. When you do not now know the people behind all these services that we normally interact with on the web, and as you correctly say, of which most has this sentence in their TOS, it is to me often enough of a reason to find an alternative service (mabye even less functional) with a TOS that is more protective of my private details.

    However, I did see this part existing in your TOS as I registered an account with this forum. But, as I really wanted to become a member of this community and considered the "risk" of privacy compromise to be low, I guess I made an exception to my stance :) And with you saying all that you just said, it feels much better. Even though, I guess my request is still standing. But no matter what your decision will be, it will not affect my willingness to continue being a member - it would only make me feel a bit better :)

    Sorry about that! I will use this section if there's a next time. Feel free to move these posts over there!

    Much love, and many thanks for providing such a great community forum like this!
     
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  16. Mark

    Mark Acting CEO

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    The Open Medicine Institute's OpenMedNet platform, launched just a few days ago, is pretty much what you've just described, I think:
    http://finance.yahoo.com/news/open-medicine-institute-launches-novel-123000485.html
    https://www.openmednet.org/registration/mecfs

    Actually, quite a lot of people have had this idea, and we've made some attempts to create such a thing here on Phoenix Rising, but we've always ended up getting distracted away from development projects and had to spend our time on the day-to-day issues involved in running PR. But it remains a long-term aspiration, if we can build a big enough team of volunteers to have resources to spare for managing projects.
     
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  17. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @Mark Thank you for the info and I am going to my first appt at OMI in a few days. I didn't know about their new platform but just looked at the links you posted. I am hoping to learn about everything they have to offer at my appt and will share more with the board.
     
  18. Mark

    Mark Acting CEO

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    Great, I look forward to your report. :)
     
  19. optimist

    optimist Senior Member

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    @Mark Thanks for the info about OMI. I signed up with them to check it out. At the moment it seems one can just enter what condition you have and what meds/treatment you've taken.

    That's very interesting!
    Did you ever start developing this system, or was it just at the planning stage? I have some experience with frontend and backend development(, and a serious lack of brain power) :) But if the project is brought up again, I could be interested to help.
     
  20. JT1024

    JT1024 Senior Member

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