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  1. #1
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    Default Design Stage Feedback

    Hi everyone,

    It's Marta...the one with the perpetual flow of crazy ideas.
    I'm working on a new one, and would love some feedback.

    As a background, I should tell the newer people on here that a few years back I put together a small ten question survey that with the help of Andrew's promotion on here, got just over 1,000 Weggie respondents, and subsequently was used to publish an article in a French Rheumatology Journal supporting the fact that patient driven data is just as reliable as official research driven data. So thanks to this site, Andrew, and it's users, we are that much further in validating our knowledge and experience as research worthy.

    Now... my new crazy idea.

    I would like to build an app for people with autoimmune disease. In my experience, the issues we are having are pretty much duplicated in the over 140 other autoimmune disease groups and by bringing attention to the disease as a whole, we will have not only more visibility, but also a greater chance of finding a cure. If a cure is found for MS, or Lupus, or RA, then a cure is found for us and vice versa. That is if it is a true cure, addressing the etiology of autoimmune disease where the immune system turns on healthy tissues. That being said, I think that if we build an app that can help the patient with their everyday life with Wegener's, we can also help a number of other patients dealing with other autoimmune diseases. While helping patients in the foreground, we could gather data in the background that could help us in our goal to educate researchers, to motivate legislators and funding with metrics, and to bring this disease to the forefront of cultural awareness. We are with autoimmune today, where cancer was in the 70's. The general public (and even some medical practitioners) are quite clueless as to the scope, the cost (both financial and human,) and the potential positive gain society can accrue from eliminating this disease. By gaining these metrics (excluding personal information) we can move our cause forward a hundred fold.

    So here's my question for you. What kinds of elements would you like to see in an app that helps you deal with your Wegener's?
    Below are some ideas to get the communal brainstorm churning.

    Disease:
    Diagnosis
    Date of diagnosis
    Age at diagnosis
    Family history of AI disease

    Meds:
    what kind
    daily reminder
    reminder for next purchase
    supplements

    Doctor's Appointments:
    Dates
    Transportation to and from
    Who's coming with you
    Questions to ask
    Notes from doctor's visit
    What specialists are you seeing

    Cost:
    meds
    getting to and from doctors appointments
    parking
    homecare
    living aids
    therapies
    special foods

    Food:
    special diet requirements
    delivery

    Work:
    time off
    family taking time off for support
    required paperwork
    human resources/bosses contact
    tax info for later deductions
    retraining for new line of work

    Symptom tracker

    Physical rehabilitation

    Emotional/Psychological rehabilitation

    Support groups and contacts

    ... and of course have the option for more than one disease since as we all know, if you have one autoimmune disease, then you're more likely to acquire another flavour of AI disease.

    So there. Here's the start and idea fodder. I have a few thousand dollars to play with from our foundation, and I'd love to use it wisely so that we can start getting the attention we need to further our cause (that being a cure.) Unlike many charities that make a business out of being a charity, I'm actually looking towards finding a cure and giving the people working for charities an opportunity to find something different to do - save animals, or feed the hungry, etc. I want to see autoimmune disease eradicated, and at this point in my life, I think this might be a good way to start the process.

    Peace out y'all. I can't wait to see the brilliant ideas to follow.

    Much love.

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  3. #2
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    Ditto to all of the above. Great idea, marta.

    I would also add the following:

    * Results of blood tests with tracking of what needed to be tracked.

    * Scale for disease activity: it should include specific symptoms for each AI disease and an option to rate them and get some results about the disease activity.

    For example, our scale might look like that:

    How much do you have the following symptoms, rate from 1-5:

    Nose bleeds
    Nose crusting
    Joints pains
    Ears infections
    Coughing without production
    Coughing with productions
    Shortness of breath
    Difficulty in breathing
    Gum bleeds
    Red eyes
    Scleritis, episcleritis
    Fatigue
    Rash
    (I dont know what the symptoms are for kidneys involvement because I dont have it, need to add here)

    Each one can make at first his own scale for flare, smoldering and remission and then can check from time to time. (Some for example still have nose crusting while in remission and for others it can be a sign of a flare)

    * diary of symptoms. You mark one when you have it.

    * warning of the app when you collect too many symptoms.

    *prayers.

    So glad to see you here, marta. I missed you.
    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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  5. #3
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    Love it! Thanks Alysia... those are great additions.
    I miss everyone on here as well, but I've been engrossed in trying to get back to normal since my flare last April, and then subsequent Pulmonary Embolism. I'm off the pred - yaaa-friggin-hooo!!!! but my oxygen saturation is still hanging out in the 'suck wind' department. This too shall pass. In typical form, I want to focus on something bigger than me (which tends to make me better) and this is a great place to start.

    Peace.
    m

  6. #4
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    Hey Marta, welcome back

    Gosh this is way above anything that my brain could fathom, but you and Alysia seem to have a grip on it.

    In reply to Alysia's blood test tracker, an easy to read graph of results from one test to the next or year to year etc. (maybe this is what Alysia has just said )

    Emergency phone contact numbers

    Blood group


    I'm glad you are off pred, and hope that you have continued improvement
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  7. #5
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    Hey Michelle,

    I like the graph idea. I know many patients aren't as 'keen' as us, I was just talking to an acquaintance last night who had a heart attack a few years back and he doesn't even know the meds he's on... he said to me that I look great, and I told him that it's funny how no matter what you look like, you always look great after a bout of heavy pred, to which he replied, "who knows, maybe I'm on pred" to which I felt like saying, "oh, you'd know buddy" but I kept my mouth shut. Ha ha. But I think it would be good to have everything in the app for both the keeners and the blind instruction followers. Who knows, maybe an app would make the latter more involved with their healing process.
    And yes, emergency phone numbers. Maybe we could do it so that it has a medi-alert function when your phone is on lock screen with meds and condition and emergency contacts. I like that idea.

    Now changing topic to 'continued improvement'

    Brian got me an electric-assist mountain bike for Christmas. The best gift I've ever ever ever gotten (aside from my kidling). I've managed to put on over 500km on it since mid January. I can also go and bike with my husband again, which is what we did before I got sick. It was our first date actually, a mountain bike ride together. It increases the output of each pedal stroke, so there is no free ride with it, just a faster ride for the energy output. I can keep up now, and hills are not an issue. We've been riding mostly on the roads, with only a couple of actual trail rides(on snow), but I can't wait to get on the trails once the snow melts. Like I said, best gift ever. It's gotten me out of my pulmonary embolism funk, and outside, and moving. Talk about therapy. The continued improvement continues.

    P.S. Here's a good photo showing how you'd know you're on pred.
    IMG_2929.jpg
    Ha ha ha ha ha.
    One month and a half difference.
    Last edited by marta; 04-08-2017 at 11:53 PM.

  8. #6
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    A bit of your idea mimics the Health app that comes pre-loaded on an iPhone 6.

    The pred photos are, well, um, striking, I guess...
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  9. #7
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    Default Re: Design Stage Feedback

    What a stunning idea and akready has so much deapth, i bet you have a cape and where your pants on the outside of your clothes! :-)

    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)

  10. #8
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    Default Re: Design Stage Feedback

    Quote Originally Posted by BenHornsby View Post
    What a stunning idea and akready has so much deapth, i bet you have a cape and where your pants on the outside of your clothes! :-)

    Sent from my SM-G930F using Tapatalk
    Other things i think about are what fluids i have had and diet, fitness or activity would influence recovery/management of it. I see a common link after reading posts with stress and thats hard to quantify as we all deal with it in different ways. Capturing all the data would be an awesome quest and so benifit much more than I can comprehend.... if I can help in any way please let me know.. my background is in IT networks and communications and have good friends that work in the industry that I can call on for advise if ever you need it.

    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)

  11. #9
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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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  13. #10
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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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