The Light Collective

white text on blue background, says "Just do something (permission granted), a blog from @DanaMLewis on DIYPS.org"

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: 👇🏼

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.

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.

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.

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 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.

"'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...

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…

🧪 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

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.

“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

Light Collective - Tangled In The Web: Visit the post for more.

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.

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... 👀

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...

Great list! Would love to be added.

We are focused on advancing rights and voices of patient communities in health technology.

#belikelight
Lightcollective.org

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

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.

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: 🩺🖥️

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.

Make it stop.

#mLsky #medsky

www.nytimes.com/2024/11/18/w...

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.

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!

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...

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...

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.

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 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.

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

Hello world.