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: 👇🏼

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.

Never. Give. Up. Hope. ❣️ @lightcollective.bsky.social

Fund patient support groups trying to migrate off Meta. lightcollective.org

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...

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

"'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...

🧪 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

“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...

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

Great tips from @danamlewis.bsky.social for when to mask based on where CO2 is highest this holiday season. #bcsm #mecfs #chronicillness #brca

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...

Honored to be part of this #patientsafety starter pack. 👇🏻👇🏻

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

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... 👀

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

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: 🩺🖥️

Make it stop. #mLsky #medsky www.nytimes.com/2024/11/18/w...

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!

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...

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...

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...

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

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.

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

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