In response to national initiatives forming artificial intelligence (AI) standards, codes of conduct, and bills of rights in healthcare settings, largely in the absence of input from patient communities, AI Rights for Patients was launched today by The Light Collective.
Check out this resource from GoInvo which visually describes how your health data are used by different entities. When we as patients lack access to our own complete medical records, one thing to consider is how many others had such easy access to our data.
A 2023 Study by Joanne Kim at Duke University, found that data brokers are marketing highly sensitive data on individuals’ mental health conditions on the open market, with seemingly minimal…
“If you know the enemy and know yourself, you need not fear the result of a hundred battles.“ ― Sun Tzu, The Art of War AI Prompt: Sun Tzu, The Art of…
In an age where our lives are increasingly digitized, and patients are often reduced to numbers and odds of survival – our stories matter more than ever. We are very…
Safety – Back in the Day For over a decade, I’ve had the privilege of engaging with various patient communities, both in person and online. During this time, I’ve witnessed…
Building a Protective Shield For Patient Communities Online One of the most important, and hardest, lessons I’ve learned in life is to ask for help. My struggle has always been…
by Rachel Tobac, Social Proof Security What happened in this data leak? Cyber criminals were able to find passwords that were involved in other breaches online and use a method…
by Tambre Leighn, Well Beyond Ordinary We’ve got a secret In terms of healthcare privacy, my first significant encounter came when I was a young adult caring for my late…
We are at DEF CON this week presenting our latest work, and the timeline since our proof-of-concept study published last year.
The Light Collective is thrilled to announce our partnership with CancerX, a public-private partnership co-hosted by Moffitt Cancer Center and the Digital Medicine Society (DiMe).
The Light Collective is advancing the collective rights, voices, and interests of patient communities in healthcare technology. You can read all about our mission here. Healthcare technology can move faster than our…
It is with a heavy heart that we announce the unexpected passing of our dear friend KJ Surkan. KJ passed away peacefully in his sleep on Saturday, January 28th. Born February 6, 1969, KJ was a light in this world and was an integral part of our community. There are no words to express our deep sorrow but we are grateful to have known KJ.
It is both appropriate and regrettable that October is Breast Cancer Awareness Month and Cybersecurity Awareness Month. As breast cancer survivors, collaborators with online patient communities, and founders of an organization representing the rights and voices of patients in healthcare technology, we are committed to using technology to educate, support, and empower as many breast cancer patients as possible so they can have the knowledge and tools to beat cancer and live their best lives.
There is a new report from George Washington University called Digital Trade and Data Governance Hub rates 68 countries on their approaches to data governance. This report scores each country on 26 factors over six categories.
While these changes were widely praised and covered in the media as a step to make the platform safer, this new analysis shares the current state of ad targeting tools to infer an individual’s “interests” as a proxy for medical history.
Facebook pledged to remove race, health conditions, and political affiliation from ad-targeting options, but The Markup found advertisers can still easily target the same people By: Angie Waller and Colin…
We are expanding our team and hiring part time patient leaders to work on an exciting new project.
Our latest research was featured in Wired and Ars Technica!
We are thrilled to have the chance to make the news again, and will continue to shed light on ways patient communities can have their privacy and collective rights respected.
Such organizations often deal in sensitive issues, like mental health, addiction, and reproductive rights—and many are feeding data about website visitors to corporations
There have been many new developments since we originally found this security flaw with Facebook’s group settings that impacted millions of people. SicGRL is no longer the only issue that the patient community has with Facebook. There have also been subsequent vulnerabilities discovered beyond SicGRL that impact the safety of Facebook users. This blog post is a high-level summary and update about what has changed since the FTC got involved—and, importantly, what has not changed.
By Christine Von Raesfeld, Founder of People With Empathy In the intricate web of healthcare information dissemination, a legal battle has emerged between the American Hospital Association and the Federal…
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