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NIH asking for public input about health tracking devices

Discussion in 'Action Alerts and Advocacy' started by Kati, Jul 10, 2015.

  1. Kati

    Kati Patient in training

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    http://feedback.nih.gov

    Using mHealth for the Precision Medicine Cohort
    Posted on July 6, 2015
    Large studies on health and disease typically collect health and lifestyle data on participant volunteers from medical records and extensive phone or paper surveys.

    The Precision Medicine Initiative is considering using smart phone and wireless technologies to collect some of this information.

    These devices could provide the ability to track health behaviors and environmental exposures much more frequently with minimal burden on participants.

    For example, participant volunteers could respond to a few questions multiple times per day via their smart phones about their health status, activities, emotional states, etc.

    Location information from their smart phone or wearable device could be used to assess daily activity and also detect exposure to air pollution, etc.

    Wearable devices can assess heart rate and other physiological states as well as physical activity levels.

    Smartphones also could keep participants connected to the study, providing feedback on the data they provide as well as the aggregate data and findings of the study.

    The use of these mobile and wireless devices generates a number of considerations:

    1. Willingness of participants to carry their smartphone and wear wireless sensor devices sufficiently throughout the day so researchers can assess their health and activities.
    2. Willingness of participants without smartphones to upgrade to a smartphone at no expense.
    3. How often people would be willing to let researchers collect data through devices without being an inconvenience.
    4. The kind of information participants might like to receive back from researchers, and how often.
    5. Other ways to conveniently collect information from participants apart from smart phones or wearable devices.
    We’d like your thoughts on using smart phone and wireless technologies to collect information.

    Please note this is not related to ME patient population and I believe their Precision Medicine Cohort will start with cancer patients. But it is a good idea for patients of all kinds to get involved, and perhaps an opportunity to ask NIH to not leave the most neglected patients and diseases behind.
     
    ahimsa, MeSci, Bob and 2 others like this.
  2. GONZ0hunter

    GONZ0hunter

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    Fragelle rock, USA
    I have mixed feelings about this. I track a lot, pain, fatigue, steps, blood sugar, etc.

    I am all for letting me track everything. I am very scared that my disability or insurance co will use this to screw everyone.

    For ex, you one day go pee 10 times because you are hydrating for an infusions, this drives your steps up 10%.

    Then you go to a dr the next day and you are up 20%. This data can be used to say, you should be able to work. Alternatively it could say, we won't pay for health related items because you aren't pushing yourself.
     
    MeSci, SDSue and duncan like this.
  3. duncan

    duncan Senior Member

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    Yeah, I, too, fear the potential for abuse. For me, the risk of misuse by govt outweighs potential benefits.

    I am reminded of the pills that could report when they were ingested, ostensibly to aid forgetful patients...
     
  4. GONZ0hunter

    GONZ0hunter

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    Their was a movie where when you peed it monitored what you ate and monitored your fitness.

    Only elite human hybrids could get good jobs. The lead faked being elite after his friend is parapeligic.
     
  5. duncan

    duncan Senior Member

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    Fear And Loathing In Medicine? :thumbsup:
     
  6. GONZ0hunter

    GONZ0hunter

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    I'm gods own prototype, too rare to live, to weird to die.
     
    duncan likes this.
  7. duncan

    duncan Senior Member

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  8. Kati

    Kati Patient in training

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    This is a very valid concern worthy of mention for NIh to consider.
     
  9. ahimsa

    ahimsa Moved to www.s4me.info

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    That was Gattaca, I think?

    http://www.imdb.com/title/tt0119177/?ref_=fn_al_tt_1

    PS. Sorry to derail the thread from the NIH discussion.
     
  10. GONZ0hunter

    GONZ0hunter

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    Fragelle rock, USA
  11. caledonia

    caledonia

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    Cincinnati, OH, USA
    GATTACA?

    Oops, just saw the other reply - great movie.
     
  12. Valentijn

    Valentijn WE ARE KINA

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    Yes, and you're correct to name it in caps. The name is derived from rearranging the four nucleobases that form DNA: A C G T. Which of course are always capitalized themselves. Though I suspect you already knew that about the movie :D
     
  13. GONZ0hunter

    GONZ0hunter

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    Watching ex machina right now.

    Totally derailing the conversation. Jupiter ascending is next up today.
     

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