I have a hard time saying no. I’m celebrating #NOvember.
It’s where I practice saying no to things I don’t want to do anymore.
#belikelight #bcsm
It’s where I practice saying no to things I don’t want to do anymore.
#belikelight #bcsm
November 23, 2024 at 2:06 PM
I have a hard time saying no. I’m celebrating #NOvember.
It’s where I practice saying no to things I don’t want to do anymore.
#belikelight #bcsm
It’s where I practice saying no to things I don’t want to do anymore.
#belikelight #bcsm
There has been an uptick in requests from organizations looking for privacy and security training since Election Day, EFF’s @evacide.bsky.social told @axios.com.
High-risk groups are preparing for increased surveillance during Trump 2.0
The president-elect has promised retribution against his enemies — and that will likely include digital monitoring.
www.axios.com
November 17, 2024 at 8:46 PM
Good insights in here from @fredtrotter.bsky.social.
#hitpolicy #belikelight #medsky
secondopinion.media/p/why-is-hea...
#hitpolicy #belikelight #medsky
secondopinion.media/p/why-is-hea...
Why is healthcare so bad at cybersecurity?
Plus, some thoughts about Transcarent buying Accolade!
secondopinion.media
January 8, 2025 at 11:45 PM
Good insights in here from @fredtrotter.bsky.social.
#hitpolicy #belikelight #medsky
secondopinion.media/p/why-is-hea...
#hitpolicy #belikelight #medsky
secondopinion.media/p/why-is-hea...
Health privacy is a joke in the US and it’s killing us.
We decided to #fafo for the last decade. Now we’re finding out.
🩺🖥️
#belikelight #medsky #medtech #hitpolicy
We decided to #fafo for the last decade. Now we’re finding out.
🩺🖥️
#belikelight #medsky #medtech #hitpolicy
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: 🩺🖥️
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 4:44 PM
Health privacy is a joke in the US and it’s killing us.
We decided to #fafo for the last decade. Now we’re finding out.
🩺🖥️
#belikelight #medsky #medtech #hitpolicy
We decided to #fafo for the last decade. Now we’re finding out.
🩺🖥️
#belikelight #medsky #medtech #hitpolicy
Sometimes it’s hard to understand the impact of a donation when we care about a cause.
I love this thoughtful approach from @danamlewis.bsky.social !
#belikelight #medsky #disability
I love this thoughtful approach from @danamlewis.bsky.social !
#belikelight #medsky #disability
1/ 🧵How much does it cost to save the life of a person living with diabetes?
We (@scottleibrand.bsky.social & @danamlewis.bsky.social) did the math to re-assess how cost-effective Life For a Child is in supporting children with diabetes in low-income countries.
Here’s what we found:
We (@scottleibrand.bsky.social & @danamlewis.bsky.social) did the math to re-assess how cost-effective Life For a Child is in supporting children with diabetes in low-income countries.
Here’s what we found:
March 6, 2025 at 3:49 AM
Sometimes it’s hard to understand the impact of a donation when we care about a cause.
I love this thoughtful approach from @danamlewis.bsky.social !
#belikelight #medsky #disability
I love this thoughtful approach from @danamlewis.bsky.social !
#belikelight #medsky #disability
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
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
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
Care about data privacy, patient rights, and data ethics? Then follow Andrea & the Light Collective #BeLikeLight #OpenData #OpenScience #HIPAA #PatientAsCEO #PatientPower
Hi #Medsky 👏. Been here a while and thrilled to finally see folks coming to the light side 💡
I’m a #brca advocate turned ethical hacker and privacy advocate for patient communities.
#belikelight
I’m a #brca advocate turned ethical hacker and privacy advocate for patient communities.
#belikelight
November 8, 2024 at 4:35 AM
Hi #Medsky 👏. Been here a while and thrilled to finally see folks coming to the light side 💡
I’m a #brca advocate turned ethical hacker and privacy advocate for patient communities.
#belikelight
I’m a #brca advocate turned ethical hacker and privacy advocate for patient communities.
#belikelight
iOS and Android development experience for newbies via @danamlewis.bsky.social
#wearenotwaiting #belikelight
diyps.org
#wearenotwaiting #belikelight
diyps.org
DIYPS.org
#WeAreNotWaiting to make the world a better place
diyps.org
April 12, 2025 at 12:46 AM
iOS and Android development experience for newbies via @danamlewis.bsky.social
#wearenotwaiting #belikelight
diyps.org
#wearenotwaiting #belikelight
diyps.org
My take: surveillance capitalism targeted content to radicalize online communities.
Health data on social media were weaponized over the past 7 years to target 🎯 medical #misinfo on blast via Meta / X.
#belikelight #mlsky #medsky
Health data on social media were weaponized over the past 7 years to target 🎯 medical #misinfo on blast via Meta / X.
#belikelight #mlsky #medsky
How did Public Health become public enemy number 1?
November 27, 2024 at 5:47 PM
My take: surveillance capitalism targeted content to radicalize online communities.
Health data on social media were weaponized over the past 7 years to target 🎯 medical #misinfo on blast via Meta / X.
#belikelight #mlsky #medsky
Health data on social media were weaponized over the past 7 years to target 🎯 medical #misinfo on blast via Meta / X.
#belikelight #mlsky #medsky
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...
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
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...
Thank YOU for all that you do.
Happy Thanksgiving!!! 🍁🍽
#belikelight #medtech #bcsm #medsky
lightcollective.org/tangled-in-t...
Thank you for sharing!
While I was directly quoted in this I want to be clear that it isn’t about money (ie royalties )
This is about our collective rights and responsibilities to patient communities.
#belikelight
While I was directly quoted in this I want to be clear that it isn’t about money (ie royalties )
This is about our collective rights and responsibilities to patient communities.
#belikelight
January 16, 2025 at 11:38 PM
Thank you for sharing!
While I was directly quoted in this I want to be clear that it isn’t about money (ie royalties )
This is about our collective rights and responsibilities to patient communities.
#belikelight
While I was directly quoted in this I want to be clear that it isn’t about money (ie royalties )
This is about our collective rights and responsibilities to patient communities.
#belikelight
One thing today ☝️
As we rebuild our networks on Bluesky follow the points of light out there: patients leading change.
Let me know who to add.
#medsky #disability #belikelight
#hitsm #oncsky #chronicillness
go.bsky.app/GLsZaVm
As we rebuild our networks on Bluesky follow the points of light out there: patients leading change.
Let me know who to add.
#medsky #disability #belikelight
#hitsm #oncsky #chronicillness
go.bsky.app/GLsZaVm
March 9, 2025 at 4:22 PM
One thing today ☝️
As we rebuild our networks on Bluesky follow the points of light out there: patients leading change.
Let me know who to add.
#medsky #disability #belikelight
#hitsm #oncsky #chronicillness
go.bsky.app/GLsZaVm
As we rebuild our networks on Bluesky follow the points of light out there: patients leading change.
Let me know who to add.
#medsky #disability #belikelight
#hitsm #oncsky #chronicillness
go.bsky.app/GLsZaVm
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...
#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
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...
#chronicillness #belikelight
www.hipaajournal.com/aha-files-la...
Great list! Would love to be added.
We are focused on advancing rights and voices of patient communities in health technology.
#belikelight
Lightcollective.org
We are focused on advancing rights and voices of patient communities in health technology.
#belikelight
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
November 27, 2024 at 5:22 PM
Great list! Would love to be added.
We are focused on advancing rights and voices of patient communities in health technology.
#belikelight
Lightcollective.org
We are focused on advancing rights and voices of patient communities in health technology.
#belikelight
Lightcollective.org
Discussion of AI are everywhere.
We need to look to people affected by algorithms predicting our future to be equipped to self govern.
#chronicillness # belikelight
www.dw.com/en/cancer-pr...
We need to look to people affected by algorithms predicting our future to be equipped to self govern.
#chronicillness # belikelight
www.dw.com/en/cancer-pr...
Cancer prevention: Would you want AI to predict your fate?
We all carry over 9,000 genetic mutations. Most are benign, but what happens if an AI predictive algorithm tells us we carry a risky disease-causing mutation?
www.dw.com
November 28, 2023 at 6:06 AM
Discussion of AI are everywhere.
We need to look to people affected by algorithms predicting our future to be equipped to self govern.
#chronicillness # belikelight
www.dw.com/en/cancer-pr...
We need to look to people affected by algorithms predicting our future to be equipped to self govern.
#chronicillness # belikelight
www.dw.com/en/cancer-pr...
That feeling when your paper gets cited in NEW research from a different part of the world. 👏
"The Hitchhiker’s Guide to Facebook Web Tracking with Invisible Pixels and Click IDs"
#BelikeLight
https://dl.acm.org/doi/abs/10.1145/3543507.3583311… https://pic.twitter.com/fcayRRgzhj
"The Hitchhiker’s Guide to Facebook Web Tracking with Invisible Pixels and Click IDs"
#BelikeLight
https://dl.acm.org/doi/abs/10.1145/3543507.3583311… https://pic.twitter.com/fcayRRgzhj
June 6, 2023 at 9:13 PM
That feeling when your paper gets cited in NEW research from a different part of the world. 👏
"The Hitchhiker’s Guide to Facebook Web Tracking with Invisible Pixels and Click IDs"
#BelikeLight
https://dl.acm.org/doi/abs/10.1145/3543507.3583311… https://pic.twitter.com/fcayRRgzhj
"The Hitchhiker’s Guide to Facebook Web Tracking with Invisible Pixels and Click IDs"
#BelikeLight
https://dl.acm.org/doi/abs/10.1145/3543507.3583311… https://pic.twitter.com/fcayRRgzhj
Thank you @wyden.senate.gov for meeting with us last week as part of World Patient Safety Day.
We were glad to have our voices heard by your team. #belikelight
We were glad to have our voices heard by your team. #belikelight
Nearly every single American was affected by the UnitedHealth Group hack earlier this year. Patients deserve to know their most personal health care data is being protected with bare minimum cybersecurity standards. I just introduced a bill to make that a reality.
Senate bill eyes minimum cybersecurity standards for health care industry
The legislation from Sens. Wyden and Warner comes in the aftermath of the February ransomware attack on Change Healthcare.
cyberscoop.com
September 27, 2024 at 5:59 PM
Thank you @wyden.senate.gov for meeting with us last week as part of World Patient Safety Day.
We were glad to have our voices heard by your team. #belikelight
We were glad to have our voices heard by your team. #belikelight
Health data privacy is more important than ever given the criminalization of healthcare data. Erik Perakslis shares some wisdom of what we need to understand https://www.statnews.com/2023/05/12/hipaa-abortion-health-data-privacy-draft-rulemaking/
#belikelight
@belikelight.bsky.social
#belikelight
@belikelight.bsky.social
Proposed rules to protect health data in an era of abortion bans fall short
Though a rulemaking may seem wonky, it will affect the lives of untold numbers of Americans.
www.statnews.com
May 12, 2023 at 10:30 PM
Health data privacy is more important than ever given the criminalization of healthcare data. Erik Perakslis shares some wisdom of what we need to understand https://www.statnews.com/2023/05/12/hipaa-abortion-health-data-privacy-draft-rulemaking/
#belikelight
@belikelight.bsky.social
#belikelight
@belikelight.bsky.social
Blog post for online patient community participants/leaders including a link to the #BeLikeLight needs assessment. This community-based research effort seeks to ensure issues around data/security that matter most to patients are identified & prioritized. lightcollective.org/2023/10/20/s...
October 24, 2023 at 12:12 PM
Blog post for online patient community participants/leaders including a link to the #BeLikeLight needs assessment. This community-based research effort seeks to ensure issues around data/security that matter most to patients are identified & prioritized. lightcollective.org/2023/10/20/s...
Patients create massive amounts of data about themselves, through social media, wearables, and engaging with the healthcare system. The privacy risks are daunting, esp with AI. These advocates are here to help.
@BeLikeLight @lightcollective.bsky.social
@BeLikeLight @lightcollective.bsky.social
Patient data in the age of AI
Fred Trotter talks with leaders from the Light Collective, a patient-led advocacy group focused on data privacy, security, research, and policy. This discuss...
buff.ly
October 9, 2024 at 4:18 PM
Patients create massive amounts of data about themselves, through social media, wearables, and engaging with the healthcare system. The privacy risks are daunting, esp with AI. These advocates are here to help.
@BeLikeLight @lightcollective.bsky.social
@BeLikeLight @lightcollective.bsky.social
@BeLikeLight are you aware of https://www.linkedin.com/company/inkind-space/ coming along - i wonder if they have considered security?
InKind Space | LinkedIn
InKind Space | 114 followers on LinkedIn. HELPING YOU LIV...
www.linkedin.com
November 11, 2024 at 9:57 PM
@BeLikeLight are you aware of https://www.linkedin.com/company/inkind-space/ coming along - i wonder if they have considered security?
Anthem Awards
Brought to you by The Webby Awards, The Anthem Awards hon...
entries.anthemawards.com
November 11, 2024 at 6:22 PM
Looks at @BeLikeLight @5urvivatrix @dequesystems
November 9, 2024 at 11:44 PM
Looks at @BeLikeLight @5urvivatrix @dequesystems
If anyone out there can help @BraveBosom and @BeLikeLight , this is one of the big privacy issues out there in the real world #CyberMentoringMonday https://twitter.com/BraveBosom/status/1234647222727233537
November 11, 2024 at 5:47 AM
If anyone out there can help @BraveBosom and @BeLikeLight , this is one of the big privacy issues out there in the real world #CyberMentoringMonday https://twitter.com/BraveBosom/status/1234647222727233537
Since it’s that time of year, I am reminded of “The Hill We Climb” by poet Amanda Gorman. I loved her speech. At this point of our history, I hope people will take the time to learn and understand more about each other. Now is the time to be noisy. #belikelight
1/3
1/3
Inaugural poet Amanda Gorman delivers a poem at Joe Biden's inauguration
YouTube video by CNBC Television
youtu.be
January 18, 2025 at 1:48 PM
Since it’s that time of year, I am reminded of “The Hill We Climb” by poet Amanda Gorman. I loved her speech. At this point of our history, I hope people will take the time to learn and understand more about each other. Now is the time to be noisy. #belikelight
1/3
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