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: 👇🏼
The Light Collective
@lightcollective.bsky.social
We are on a mission to advance the collective rights, interests, and voices of patient communities in health technology. https://lightcollective.org
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.
yahoo.com
Fund patient support groups trying to migrate off Meta. lightcollective.org
Light Collective - No Aggregation Without Representation
We are a nonprofit on a mission to help peer support groups foster healthy human connections on the internet. We provide tools, resources, and training for patient peer support group leaders to practi...
lightcollective.org
Mark Cuban@mcuban.bsky.social · 2y agoSpeaking of healthcare. Let's make @bsky.app the platform that fights misinformation. Some great follows are @drsusanoliver.bsky.social @jsm2334.bsky.social @therealtruther.bsky.social Let's get them more followers and engagement than other platforms and let health science accounts find a home
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
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...
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.
statnews.com
🧪 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…
healio.com
“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
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
Dana M. Lewis@danamlewis.bsky.social · 2y ago‘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
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
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
Andrea@downing.bsky.social · 2y agoRussian cybercriminal gang BlackCat posted nude photos of breast cancer patients to the dark web after Lehigh Valley refused to pay ransom. #bcsm www.beckershospitalreview.com/cybersecurit...
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.
statnews.com
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
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...
hipaajournal.com
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
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.
latimes.com