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Thread: Design Stage Feedback

  1. #31
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    Default Re: Design Stage Feedback

    I want that app. I just started Pred yesterday again. It would be nice to track symptoms of a new drug, and good results also.

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  3. #32
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    Default Re: Design Stage Feedback

    Hi again,

    Just had an appoint ment with my consaltant today and a real usful tool for the app as I have a brain like a sieve would be a sound recorder so we could digest what's being said later and have a personal log of what's said for reference/research??

    Could have other uses for notes to take in to appointments as there is Always things you forget in the moment being distracted with pain/problems ect

    I think a panic button for help to a family member/s or designated number of the users picking that could text or two way calling on it could be useful as well, i have been involved the development in loan worker devices that have Bluetooth hart rate monitors, fall alerts with movement time out on for automated email and message alerts.

    It's has so much potential to be an amazing application on the mainstream mobile operating systems, just need to make sure it has an intuitive and user friendly interface.....

    Really interested and exsited in this idea and hope it takes off and would only be too happy to be involved in the development of it in any way with my IT background.

    Ben x

    Sent from my SM-G930F using Tapatalk
    Ben


    Diagnosed in 2013


    Never, never, never give up! (Winston Churchill)

    What screws us up the most in life is the picture in our head of how it is supposed to be.... (Not found out yet)

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  5. #33
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    Default Re: Design Stage Feedback

    Hey Ben,

    I was just looking through my subscribed threads and stumbled onto this one and I wanna thank you for reigniting this idea. I will start putting all of this down on a list and approach some tech schools to see if they want to make it into a class project.

    In the meantime, there's an app I used for my pred history and other medical stuff, but you program it yourself for your own needs. You can also record voice memos, and even the conversation with the doctors. I did that a couple of times when I had nobody come with me at appointments. I just ask them if I can record so that I don't miss or forget anything due to the sheer volume of information at each appointment. They had no problem at all with it, and that way you can go home and digest everything said. I digress. As always.

    Lumen Trails is the app I used. I have a great visual graph of the wean.

    Thanks again for reigniting the spark.

    Peace.
    Marta

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  7. #34
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    Default Re: Design Stage Feedback

    There are some studies on going on GPA at places like Mayo. They have some symptoms checklists and self rating scales to complete at each visit plus they put in lot of data from their lab work. Maybe the app could use some of the same data. If the numbers of users is large enough it should be easier then to find correlations that might be significant. Correlation does not equal cause but might still generate useful info to help in treatment decisions or designing better experiments to check out hypotheses about GPA and how to treat it. At our present stage of ignorance about GPA and its treatment, we only have a few clues about possible causes and lot of uncertainty as to what individual factors are most likely to be relevant for successful treatment. Such an app might help people learn to recognize their own patterns and warning signs.
    Knowledge is power! Wisdom is using it to make good decisions!

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  9. #35
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    Default Re: Design Stage Feedback

    Quote Originally Posted by drz View Post
    There are some studies on going on GPA at places like Mayo. They have some symptoms checklists and self rating scales to complete at each visit plus they put in lot of data from their lab work. Maybe the app could use some of the same data. If the numbers of users is large enough it should be easier then to find correlations that might be significant. Correlation does not equal cause but might still generate useful info to help in treatment decisions or designing better experiments to check out hypotheses about GPA and how to treat it. At our present stage of ignorance about GPA and its treatment, we only have a few clues about possible causes and lot of uncertainty as to what individual factors are most likely to be relevant for successful treatment. Such an app might help people learn to recognize their own patterns and warning signs.
    Thanks drz,

    I think that's valuable info. I have to force myself to put my interest outside of WG. Include it but it's a small part of a much bigger puzzle that not a lot of people are trying to solve.

    I see the answer to WG lying inside the answer to autoimmune disease and the only way to get to it is by doing the puzzle as a whole one step at a time. The way that I see the big picture is kind of like a Sudoku puzzle. Where autoimmune disease is the big puzzle, and each individual autoimmune disease is one of the squares within the puzzle. You get answers within the small squares only in relation to every other square in the whole puzzle. That's why I think we have to look at the puzzle of autoimmune disease, with each manifestation giving us answers to other manifestations and you work your way around the puzzle from one small square to another, jumping around based on the last discovery until you finish the puzzle. Once the puzzle is complete, poof, no more autoimmune disease (very wishful thinking) and as a byproduct, autoimmune disease becomes one of the small squares of an even bigger picture - chronic diseases that are directly related to a malfunctioning immune system (cancer, heart and stroke, mental health)... so my vision is massive, delusional, but I have faith that it will come to fruition. The only question is will I be alive to see it happen.

    How's that for nauseating optimism?
    I know, right.

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  11. #36
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    Default Re: Design Stage Feedback

    Hi marta,

    I hope that you & yours are doing ok.

    The health services in Israel publish the following app

    https://www.khealth.ai

    I didnt downloaded it. Not sure I like the idea of virtual dr. Asking me questions... but maybe parts of it can be useful for us....
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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