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Thanks for the kind words, and good luck to your family. We really do want to make this into a tool that can help people, if possible. My intuition is that bei

by anmol 16y ago

Thanks for the kind words, and good luck to your family. We really do want to make this into a tool that can help people, if possible. My intuition is that being able to quantify and visualize 'quality-of-life' automatically, will help support diet and lifestyle changes. What kind of features/UI would you like to see in such a tool? Would it be better is this was generic (e.g. like Facebook), or something specifically for patients with CF?

Mz 16y ago
What kind of features/UI would you like to see in such a tool? Would it be better is this was generic (e.g. like Facebook), or something specifically for patients with CF? The CF market per se is pretty small. I wouldn't look to customize it specifically for them. I also think that "good practices" generalize. If you can come up with some parameters that work well with vulnerable populations, it should work regardless of their specific issue. Features that might be nice: A text message "alert" when early indicators are noticed and perhaps a means for the customer to put in custom "prompts" so that, whatever their medical condition, they can self-remind (for example: that they might have forgotten to take a particular medication). People with medical conditions often become "forgetful" as their condition starts heading into a downward spiral and the sicker they get, the harder it gets to think about what they most need to do to stop the downward spiral. A reminder to do the right things and an alert that their patterns suggest they might be in need of extra care could well be the stitch in time that saves nine.
- anmol 16y ago
  Once we mockup our UI, would it be possible to have you give feedback / provide suggestions? Could you help us put together a user-trial with say 10-15 tech-savvy parents like you?
  - Mz 16y ago
    You can contact me via the email address on any of the websites in my profile. I belong to some health lists. I would want to ask the list-owners permission first, but I might be able to help you put together a trial. We can discuss more details via email.

by anmol 16y ago

Mz 16y ago

What kind of features/UI would you like to see in such a tool? Would it be better is this was generic (e.g. like Facebook), or something specifically for patients with CF? The CF market per se is pretty small. I wouldn't look to customize it specifically for them. I also think that "good practices" generalize. If you can come up with some parameters that work well with vulnerable populations, it should work regardless of their specific issue. Features that might be nice: A text message "alert" when early indicators are noticed and perhaps a means for the customer to put in custom "prompts" so that, whatever their medical condition, they can self-remind (for example: that they might have forgotten to take a particular medication). People with medical conditions often become "forgetful" as their condition starts heading into a downward spiral and the sicker they get, the harder it gets to think about what they most need to do to stop the downward spiral. A reminder to do the right things and an alert that their patterns suggest they might be in need of extra care could well be the stitch in time that saves nine.

anmol 16y ago
Once we mockup our UI, would it be possible to have you give feedback / provide suggestions? Could you help us put together a user-trial with say 10-15 tech-savvy parents like you?
- Mz 16y ago
  You can contact me via the email address on any of the websites in my profile. I belong to some health lists. I would want to ask the list-owners permission first, but I might be able to help you put together a trial. We can discuss more details via email.