The Light Collective
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lightcollective.bsky.social
The Light Collective
@lightcollective.bsky.social
360 followers 47 following 4 posts
We are on a mission to advance the collective rights, interests, and voices of patient communities in health technology.

https://lightcollective.org
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danamlewis.bsky.social
Frustrated?

Overwhelmed by uncertainty?

Feeling out of control of...::gestures at everything::?

Do something. ANYTHING. Right now. No matter how small.

Here's a trick to get started: 👇🏼
white text on blue background, says "Just do something (permission granted), a blog from @DanaMLewis on DIYPS.org"
March 7, 2025 at 7:24 PM
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broadwaybabyto.bsky.social
26 year old Canadian woman had her stage 4 colon cancer repeatedly dismissed. It was only found when she arranged her own MRI by pulling strings thanks to a family friend.

Imagine what happens to those who can’t pull strings?

Patients know their bodies & need to be believed.
A 26-year-old with stomach pain was getting checked for celiac disease. It turned out to be stage 4 colon cancer.
Shannin Desroches was diagnosed with stage 4 colon cancer. She had no symptoms for years, experiencing a nagging pain only months before diagnosis.
www.yahoo.com
March 18, 2025 at 9:59 PM
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rasushrestha.bsky.social
Never. Give. Up. Hope.

❣️

@lightcollective.bsky.social
Dark trees and night sky.. lit up by some bright stars. Quote says: Only in the darkness can you see the stars. .Martin Luther King.
March 9, 2025 at 4:13 PM
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undiagnosed2.bsky.social
Fund patient support groups trying to migrate off Meta. lightcollective.org
January 25, 2025 at 10:09 PM
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adzebill.bsky.social
The Internet Archive has to date downloaded 500 terabytes of US government websites, which it crawls at the end of every presidential term. The whole archive is fully searchable. This effort's housed by a donation-funded nonprofit, not a branch of the US government. blog.archive.org/2024/05/08/e...
End of Term Web Archive – Preserving the Transition of a Nation | Internet Archive Blogs
blog.archive.org
February 1, 2025 at 12:58 AM
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downing.bsky.social
Follow the patients leading change starter pack.

This isn’t our first rodeo fighting misinformation shaping the future of health social media. @thelizarmy.bsky.social

go.bsky.app/GLsZaVm
January 25, 2025 at 10:28 PM
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doublewhammied.bsky.social
"'The fact that at the point of care u're forced 2 sign a consent doc 2 sign away yr rights in order 2 get care, tht in itself is a form of coercion frm our perspective,' said Andrea Downing, of @lightcollective.bsky.social. Earlier this year ... 1/2 #MedSky #CanSky

www.statnews.com/2025/01/16/h...
The companies paying hospitals to hand over patient data to train AI
A new crop of companies is lining up to buy patient data from hospitals and sell it to those wanting to train AI or do research.
www.statnews.com
January 17, 2025 at 4:34 PM
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smcgrath.phd
🧪 A JAMA research letter reveals 20% of patients leaving ERs without care return within a week, often at the same time, highlighting access issues. Data from 270M patients shows 28.4% return within 30 days. 🩺

Link to the letter: https://jamanetwork.com/journals/jama/article-abstract/2828811
Many who leave emergency rooms without being seen return within a week
About one in five individuals who leave the ED without being seen return in the next week, usually around the same time of day, according to the results of cohort study.A secondary analysis also…
www.healio.com
January 22, 2025 at 5:11 PM
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downing.bsky.social
“That’s the best gift you could give them,” said @racheltobac.bsky.social “The gift of not getting hacked.”

#medtech #medsky

techcrunch.com/2024/12/25/h...
Home for the holidays? Share this top cybersecurity advice with friends and family | TechCrunch
Sharing security advice can go a long way in protecting your loved ones from the most common and damaging online threats.
techcrunch.com
December 25, 2024 at 6:16 PM
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downing.bsky.social
When people are going through the trauma of a new diagnosis or pain of a health condition they will do what they have to do in order to survive.

We fail to protect from predators exploiting our basic need for connection, knowledge, and human vulnerability online.

#chronicillness #bcsm #btsm
November 27, 2024 at 8:19 PM
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downing.bsky.social
Great tips from @danamlewis.bsky.social for when to mask based on where CO2 is highest this holiday season.

#bcsm #mecfs #chronicillness #brca
danamlewis.bsky.social Dana M. Lewis @danamlewis.bsky.social · Nov 26
‘Tis the season…to think about situational masking, regardless of what you decide to do at other times of the year.

Some data on where you get the biggest return on masking, even if you don’t do it everywhere or always:

bit.ly/45Srmhz
Air Quality, CO2 monitoring, and Situational Masking
I do a lot of things most people don’t want to do themselves - and I get that. (For example, recording macronutrients while running? Running for up to 16 or 25 hours? Let alone other choices like buil...
bit.ly
November 28, 2024 at 2:32 PM
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lightcollective.bsky.social
We are so thankful to be partners with you on the research we co-created this year.

Thank YOU for all that you do.

Happy Thanksgiving!!! 🍁🍽
#belikelight #medtech #bcsm #medsky

lightcollective.org/tangled-in-t...
Light Collective - Tangled In The Web:
Visit the post for more.
lightcollective.org
November 28, 2024 at 4:46 PM
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tambre.bsky.social
Honored to be part of this #patientsafety starter pack. 👇🏻👇🏻
November 28, 2024 at 2:14 PM
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tambre.bsky.social
Happy Thanksgiving to my US followers! 🦃🍁 Today, at #WellBeyondOrdinary, we’re grateful for the patients, caregivers, advocates, researchers and HC professionals who inspire us every day. Together, we’re making strides in empathetic, patient-centered care. 💛✨ #Thanksgiving #Gratitude
November 28, 2024 at 4:27 PM
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ericjgeller.com
The Senate health-care cyber working group (Cassidy, Warner, Cornyn, and Hassan) has produced a bill: www.help.senate.gov/imo/media/do...

The most interesting section, given the GOP support, is the one requiring HIPAA-covered entities to meet basic cybersecurity standards... 👀
November 22, 2024 at 7:11 PM
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tmprowell.bsky.social
This is absolutely heartbreaking & should lead to reform in how patient images are stored in electronic health records, as well as prioritization of #MedSky #EHR cybersecurity in gen’l. I feel so sad for the affected patients. #bcsm #OncSky
November 24, 2024 at 6:31 PM
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brittanytrang.com
New @statnews.bsky.social from me:

HHS' Office of Civil Rights hasn't audited HIPAA compliance since 2017.

These audits, required by the HITECH Act, are supposed to assess things like cybersecurity readiness, but even when it conducted audits, OCR only looked at 8 of 180 #HIPAA rules 😳

More: 🩺🖥️
Government watchdog calls out HHS for not auditing health care's privacy compliance since 2017
The Office for Civil Rights is not checking if health care providers who handle Americans’ sensitive data comply with health privacy laws.
www.statnews.com
November 26, 2024 at 1:46 PM
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downing.bsky.social
Make it stop.

#mLsky #medsky

www.nytimes.com/2024/11/18/w...
Elon Musk Asked People to Upload Their Health Data. X Users Obliged.
Privacy experts cringed when people started feeding their medical images to the A.I. tool Grok.
www.nytimes.com
November 27, 2024 at 4:18 PM
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graspcancer.bsky.social
Hello Bsky!

GRASP is a patient-led org'n connecting & empowering patients, clinicians & researchers to exchange ideas & learn from each other – driving meaningful, fundable research & faster progress to improve treatments to end cancer.

Join our NETWORK: graspcancer.org/join-us!
Join Us - Grasp Cancer
Become a GRASP member to get access to our events and network with researchers, advocates and partner organizations in your fields of interest.
graspcancer.org
November 25, 2024 at 8:11 PM
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downing.bsky.social
American Hospital Association is suing to allow your private health data to be shared with Meta, Tiktok, X, and data brokers.

#chronicillness #belikelight
www.hipaajournal.com/aha-files-la...
AHA Files Lawsuit Challenging HHS Guidance on Tracking Technologies
The American Hospital Association (AHA), Texas Hospital Association, United Regional Health Care System, and Texas Health Resources have filed a lawsuit The American Hospital Association, the Texas Ho...
www.hipaajournal.com
November 10, 2023 at 2:17 AM
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julierehmeyer.bsky.social
Check out this stunning story about @downing.bsky.social's work exposing flaws in Facebook's privacy policies that put millions of patients at risk for years. And check out @lightcollective.bsky.social to see more about her current work. www.cnn.com/2020/02/29/h...
October 16, 2023 at 2:27 PM
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tambre.bsky.social
My 'what I did with my summer' 2023...joined other #advocates to advance awareness of the importance of digital rights for online #patient communities through @lightcollective.bsky.social Register for the October 17th Virtual Town Hall 330-5pm PST today to learn more us02web.zoom.us/webinar/regi...
The Light Collective Virtual Town Hall event invitation. "Advancing the rights of online patient communities." Being held October 17th from 3:30pm to 5pm PST. Artwork shows logos from organizations focused on patient advocacy including GRASP, Breast Cancer Hawaii, Well Beyond Ordinary, Everylife Foundation, For the Breast of Us, People With Empathy, Tigerlily Foundation, Patient Advocate Foundation, Open Notes, Health Hats, Project Life, Looms for Lupus, Alive and Kick'n, Labalaba Foundation, Generation Patient, YSC, BISA, A Fresh Chapter, Here for the Girls, and ACE.
October 9, 2023 at 7:43 PM
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khoney.bsky.social
Shoutout backatcha #BeLikeLight❣️ @downing.bsky.social @lightcollective.bsky.social

Care about data privacy, patient rights, and data ethics? Then follow Andrea & the Light Collective #BeLikeLight #OpenData #OpenScience #HIPAA #PatientAsCEO #PatientPower
October 14, 2023 at 11:49 PM
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downing.bsky.social
Hey @julierehmeyer.bsky.social we’re hosting a town hall Tuesday for trapped patient communities on Twitter and FB.

If there are more invite codes lmk if you can join us. Thank you so much for the work you have done 🙏

I’d love to talk.
October 14, 2023 at 11:52 PM
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pearlf.bsky.social
California pharmacies make an estimated 5 million errors every yr, according to state’s Board of Pharmacy. Pharmacies aren't required to report them. Most of mistakes CA officials discovered occurred at chain pharmacies such as CVS, Walgreens & Rite Aid "where a pharmacist may fill hundreds of 1/n
California pharmacies are making millions of mistakes. They’re fighting to keep that secret
As many as 9,000 Americans die each year after receiving the wrong prescription drugs or doses. Pharmacies are fighting a bill to shed light on the problem.
www.latimes.com
September 6, 2023 at 3:01 PM