The Light Collective

@BeLikeLight

Light the way through peer support.

lightcollective.org
Vrijeme pridruživanja: listopad 2019.
23 fotografije ili videozapisa Fotografije i videozapisi

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  1. proslijedio/la je Tweet
    29. sij

    We clearly need extensions of GINA and other protections. But creating a scattered data space with lots of transaction costs that enables the patient doesn’t seem like increased risk overall. Not as if our data is “private” under existing system that denies us our data.

    1 reply 3 proslijeđena tweeta 10 korisnika označava da im se sviđa
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  2. proslijedio/la je Tweet
    17. sij
    Odgovor korisnicima

    How do you find out what your CE's HIPAA policy definition is? It isn't posted like the Notice of Privacy Practices. How do review your provider's definition of the DSR? refuses to answer - just says "not part of DSR". Huh? How can a DSR be subjective?

    2 proslijeđena tweeta 2 korisnika označavaju da im se sviđa
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  3. proslijedio/la je Tweet
    29. sij

    Over 173,000,000 individuals had their health data breached in the USA from October 2008 to September 2017 “privacy worries”

    4 proslijeđena tweeta 7 korisnika označava da im se sviđa
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  4. proslijedio/la je Tweet
    29. sij

    One big thing that’s different about this data space is folks having their data on their phone. It’s not out in the cloud, liquid and transactable under a secret DUA.

    This is the height of paternalism - is suggesting that patients can’t make informed, rational, secure decisions about their own data. They also suggest THEIR platform might leak family info. That sounds like an architecture problem, not a user problem.
    1 reply 7 proslijeđenih tweetova 6 korisnika označava da im se sviđa
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  5. proslijedio/la je Tweet
    29. sij

    At least if we have our own health data, has a shot to self assemble a data collective.

    4 proslijeđena tweeta 10 korisnika označava da im se sviđa
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  6. proslijedio/la je Tweet
    30. sij

    This👇

    Notice the difference in “average family [of apps, inc FB, IG, etc] revenue per user” between Europe and North America — an illuminating set of post data for those in the US to contemplate 3/
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    2 proslijeđena tweeta 5 korisnika označava da im se sviđa
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  7. proslijedio/la je Tweet
    28. sij
    Odgovor korisniku/ci

    Doing my best to bring the & perspective to the forefront & core of the discussions. ends with us together now. We must push back from the bottom up. This is OUR healthcare. Our lives.

    1 proslijeđeni tweet 7 korisnika označava da im se sviđa
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  8. proslijedio/la je Tweet
    28. sij
    Odgovor korisnicima i sljedećem broju korisnika:

    Yes. There is an open letter and statement drafted by ePatients here. Thanks to and for rallying together a HUGE effort over the weekend. Available on Blog:

    TO: , , OMB FROM: Patients and caregivers RE: Letter supporting proposed HHS rules on improving flow of our data. Co-Signed: & many more.
    1 reply 8 proslijeđenih tweetova 8 korisnika označava da im se sviđa
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  9. proslijedio/la je Tweet
    28. sij

    Thread 👀

    For all the talk this wk…for those interested, I co-authored a chapter last yr: Nontransparency in Electronic Health Record Systems. In Transparency in Health & Health Care in United States (pp. 273-285). Cambridge University Press. Lots to address.
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  10. proslijedio/la je Tweet
    28. sij
    Odgovor korisniku/ci

    Hi ! Jumping in a few minutes late and great topic tonight.

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  11. proslijedio/la je Tweet
    28. sij

    T1: Flu resources:

    3 proslijeđena tweeta 3 korisnika označavaju da im se sviđa
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  12. proslijedio/la je Tweet
    28. sij

    T1: Check out the Seasonal Flu Partner Resources Center from the CDC here: via

    5 proslijeđenih tweetova 3 korisnika označavaju da im se sviđa
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  13. proslijedio/la je Tweet
    23. sij

    A new Washington call center can answer questions about the Novel Coronavirus (2019-nCoV), how it spreads and what to do if you have symptoms. Call 1-800-525-0127 and press #. 1/2

    55 proslijeđenih tweetova 47 korisnika označava da im se sviđa
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  14. 28. sij

    Don't let fear and health misinformation on social media spread. Follow the experts. Light the way for others seeking good knowledge about .

    THREAD: Social media has completely changed the way information about viral outbreaks travels around the world and experts say it's not for the better. 1/9
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  15. proslijedio/la je Tweet
    28. sij
    Odgovor korisniku/ci

    Thank you so much for the encouragement, gonna keep chugging away at it!!

    1 proslijeđeni tweet 1 korisnik označava da mu se sviđa
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  16. proslijedio/la je Tweet
    27. sij

    82 patient / caregiver / advocates have signed so far. Add your signature AND MAYBE YOUR DATA ACCESS STORY in comments.

    TO: , , OMB FROM: Patients and caregivers RE: Letter supporting proposed HHS rules on improving flow of our data. Co-Signed: & many more.
    1 proslijeđeni tweet 1 korisnik označava da mu se sviđa
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  17. 27. sij

    TO: , , OMB FROM: Patients and caregivers RE: Letter supporting proposed HHS rules on improving flow of our data. Co-Signed: & many more.

    16 proslijeđenih tweetova 23 korisnika označavaju da im se sviđa
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  18. proslijedio/la je Tweet
    27. sij

    Hi all & . Thanks so much for your input and stories! Please comment here ASAP if you want your name as a signer! Going to publish tonight.

    6 proslijeđenih tweetova 9 korisnika označava da im se sviđa
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  19. proslijedio/la je Tweet
    26. sij

    Super-e-patient (23 PORTALS, age 21) has a powerful letter to ONC's annual mtg Monday: pt view of proposed rule on info blocking & movement. REQUESTING SIGNATURES & ADDITIONAL STORIES GOOD & BAD about data moving & not moving.

    6 replies 8 proslijeđenih tweetova 24 korisnika označavaju da im se sviđa
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  20. proslijedio/la je Tweet
    25. sij

    Hey : sharing updates about at the link below. There's a lot of misinformation spreading too. Help get the word out on trusted sources of knowledge about .

    5 proslijeđenih tweetova 7 korisnika označava da im se sviđa
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