The Light Collective was formed by a team of patient activists, coders, health experts, and data journalists. In March 2018 in the wake of the Cambridge Analytica data breach, Andrea Downing, a Facebook support group moderator, asked herself a simple question: What are the privacy implications of having a support group of 10k cancer previvors and survivors on Facebook?
Andrea began to research this question by looking at API’s, browser plugins, and developer tools for groups on Facebook’s platform. She soon discovered a security vulnerability affecting her group of 10,000 cancer previvors and survivors.
Andrea reached out to cybersecurity expert Fred Trotter. Fred was able to confirm that the flaw Andrea found with Facebook’s privacy architecture impacted all closed groups on Facebook, and, if weaponized, could be very dangerous.
A Rescue Mission
Learning that the severity and scale of what she found impacted millions of people, Andrea sought to protect the online support group she co-moderates, The BRCA Sisterhood. Andrea and Fred quickly formed a team to figure out how to get the Sisterhood and other groups affected by this flaw to safety. They enlisted the help of another cybersecurity expert and rare disease community advocate Matt Might and BRCA Communtiy Advocate Jill Holdren. More experts and community leaders quickly stepped in to help. David Harlow and other legal and privacy experts helped Andrea and Fred to file an FTC Complaint in December 2018.
As the team expanded, more experts pitched in to help. The group began to explore the root problems that led to this situation that put so many patient and other peer groups at risk.
Read more about our people.
Andrea Downing and Fred Trotter spoke publicly about SICGRL at Health DataPalooza for the first time in March 2019, after it was safe.
With support from the Robert Wood Johnson Foundation, we organized a summit to bring together peer support community leaders and healthcare experts in spring of 2019. The Light Collective emerged from this summit.
Why ‘The Light Collective?’ Name?
In the beginning we were afraid.
The BRCA Sisterhood is an incredible support group for hereditary cancer previvors and survivors, and has supported nearly 10,000 women since it started in 2009. You can read more about the story of BRCA Sisterhood and the co-founder Karen here. BRCA Sisterhood was the first support group to find a dangerous security flaw which we call ‘SICGRL’ security vulnerability on Facebook.
We started trying to come up with names for our project that described our efforts to protect the safety and privacy of 30,000 people who are part of support groups in the hereditary cancer community. Details about the security flaw, the vulnerability report, and the FTC complaint that we filed are available at MissingConsent.org.
Seeking a path forward, our support groups started making up names that were based in fear. Names like “Operation Lifeboat” because we felt like our support group was trapped on a sinking ship without a way to escape. In late 2018, one of our mentors Dr. Larry Chu asked an important question, noticing the fear we were facing. He asked: what are the things that your group is afraid of and how do you become the opposite of that?
“What is The Opposite of Fear?”
As we asked ourselves this question, Dr. Chu helped us to re-frame our story. We feared “black boxes” where knowledge in our support groups was being used by others without our consent. We feared having our members face loss of jobs or denial of health insurance if information about our health fell into the wrong hands. We feared that data generated in our support groups online might be used in ways to cause harm, rather than to empower and benefit us. And all of these dangers that we feared were very real. As we thought of metaphors, we decided the opposite of a lifeboat seeking rescue was a lighthouse.
Summit in Washington DC: Project Lighthouse
Project Lighthouse was a summit that we held with the leaders and organizers of health peer support groups in March 2019. The goal of the summit was to come together for the first time in person, and shape a future for our support groups that we wanted to see. We split out into teams and explored how we might build trust in ways that feel fair, transparent, and sustainable for our online communities.
The results of our two-day brainstorming session are published here, and we decided to form The Light Collective.
The Light Collective is about finding a path forward that is not based in fear. Our goal is to foster healthy and safe opportunities for peer to peer connections around health. As a first step, we are shaping a vision to sustain the needs of our own support groups. As we build this vision, we recognize that it cannot be driven by one person or one online community. That’s why we’re a collective. Because the knowledge in our group is a shared resource, we make important decisions that impact our group together.
Sharing What We Learn
As we build resources to help our own online support groups, we are building bridges to other online support groups that are seeking help too. In every way, we recognize that each support group on the internet has its own set of needs and unique identity. As we bring together the leaders of peer support groups to develop good practices for healthy human connection, we are seeing immediate impact and benefit for other health communities too. We hope you’ll join us on this journey!