Reposted by The Light CollectiveDana M. Lewis @danamlewis.bsky.social · 07/03/2025Frustrated? 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: 👇🏼 134
Reposted by The Light CollectiveKelly @broadwaybabyto.bsky.social · 18/03/202526 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.yahoo.comA 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. 524959
Reposted by The Light CollectiveDr Rasu Shrestha @rasushrestha.bsky.social · 09/03/2025Never. Give. Up. Hope. ❣️ @lightcollective.bsky.social 032
Reposted by The Light CollectiveCvonraesfeld @undiagnosed2.bsky.social · 25/01/2025Fund patient support groups trying to migrate off Meta. lightcollective.orglightcollective.orgLight Collective - No Aggregation Without RepresentationWe 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... 011
Reposted by The Light CollectiveMike Dickison @adzebill.bsky.social · 01/02/2025The 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...blog.archive.orgEnd of Term Web Archive – Preserving the Transition of a Nation | Internet Archive Blogs 4803278212105
Reposted by The Light CollectiveAndrea @downing.bsky.social · 25/01/2025Follow 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 0106
Reposted by The Light Collective@doublewhammied @doublewhammied.bsky.social · 17/01/2025"'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...statnews.comThe companies paying hospitals to hand over patient data to train AIA 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. 221
Reposted by The Light CollectiveScott McGrath @smcgrath.phd · 22/01/2025🧪 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: jamanetwork.com/journals/jama/artic…healio.comMany who leave emergency rooms without being seen return within a weekAbout 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… 1123
Reposted by The Light CollectiveAndrea @downing.bsky.social · 25/12/2024“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...techcrunch.comHome for the holidays? Share this top cybersecurity advice with friends and family | TechCrunchSharing security advice can go a long way in protecting your loved ones from the most common and damaging online threats. 0186
Reposted by The Light CollectiveAndrea @downing.bsky.social · 27/11/2024When 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 101
Reposted by The Light CollectiveAndrea @downing.bsky.social · 28/11/2024Great tips from @danamlewis.bsky.social for when to mask based on where CO2 is highest this holiday season. #bcsm #mecfs #chronicillness #brca 046
Reposted by The Light CollectiveThe Light Collective @lightcollective.bsky.social · 28/11/2024We 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...lightcollective.orgLight Collective - Tangled In The Web:Visit the post for more. 044
Reposted by The Light CollectiveTambre/Well Beyond Ordinary @tambre.bsky.social · 28/11/2024Honored to be part of this #patientsafety starter pack. 👇🏻👇🏻 041
Reposted by The Light CollectiveTambre/Well Beyond Ordinary @tambre.bsky.social · 28/11/2024Happy 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 161
Reposted by The Light CollectiveEric Geller @ericjgeller.com · 22/11/2024The 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... 👀 33310
Reposted by The Light CollectiveTatiana Prowell, MD @tmprowell.bsky.social · 24/11/2024This 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 84713
Reposted by The Light CollectiveBrittany Trang @brittanytrang.com · 26/11/2024New @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: 🩺🖥️statnews.comGovernment watchdog calls out HHS for not auditing health care's privacy compliance since 2017The Office for Civil Rights is not checking if health care providers who handle Americans’ sensitive data comply with health privacy laws. 3309
Reposted by The Light CollectiveAndrea @downing.bsky.social · 27/11/2024Make it stop. #mLsky #medsky www.nytimes.com/2024/11/18/w...nytimes.comElon 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. 253
Reposted by The Light CollectiveGRASP @graspcancer.bsky.social · 25/11/2024Hello 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!graspcancer.orgJoin Us - Grasp CancerBecome a GRASP member to get access to our events and network with researchers, advocates and partner organizations in your fields of interest. 162
Reposted by The Light CollectiveAndrea @downing.bsky.social · 10/11/2023American 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...hipaajournal.comAHA Files Lawsuit Challenging HHS Guidance on Tracking TechnologiesThe 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... 044
Reposted by The Light CollectiveJulie Rehmeyer @julierehmeyer.bsky.social · 16/10/2023Check 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... 162
Reposted by The Light CollectiveTambre/Well Beyond Ordinary @tambre.bsky.social · 09/10/2023My '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... 154
Reposted by The Light CollectiveKristen Honey @khoney.bsky.social · 15/10/2023Shoutout 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 022
Reposted by The Light CollectiveAndrea @downing.bsky.social · 15/10/2023Hey @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. 142
Reposted by The Light CollectivePearl Freier @pearlf.bsky.social · 06/09/2023California 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/nlatimes.comCalifornia pharmacies are making millions of mistakes. They’re fighting to keep that secretAs 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. 121