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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 their dedicated leaders and team members working tirelessly to create a safe place for patients and caregivers. Within these online communities, patients and caregivers find resources and support focused on addressing fears, answering questions, and combating the isolation that often accompanies a diagnosis and treatment.

Initially, creating a safe space was primarily about facilitation, focusing on:

• Establishing confidentiality guidelines within the group

• Allotting equal time for each member to speak or ask questions

• Discouraging oversharing of medical information

• Demonstrating non-judgmental communication for the group.

I’m not the only one doing this. Peer support communities often do life-saving work that goes unsupported and unrecognized. These digital spaces are increasingly leveraged without any governance or rights for our communities.

External Threats Rising

As external threats to community members’ privacy mounted, strong facilitation skills were no longer enough to ensure a safe space. Patient community leaders have learned, sometimes the hard way, of the need to up the level of vigilance and protection necessary to keep the bad actors out.

In March 2018, in the aftermath of the Cambridge Analytica data breach, Andrea Downing, co-founder of The Light Collective, uncovered a major security vulnerability with Facebook’s private groups.

In 2020, during the shift to online due to the COVID-19 pandemic, I personally witnessed a shocking hijacking of a patient education webinar. Hackers infiltrated the session, projecting explicit content and spewing hate at the attendees, disrupting our sense of connection and safety. I started to wonder, if they were able to take over the call, had they also scraped information about attendees and chat conversations? While Pharma advertising has ramped up on social media, these tech platforms are not protecting us.

From Fear to Action

Although the facilitators managed to remove and block them, the incident left many feeling shaken. We later realized that sharing the call link on social media, while convenient for accessibility, provided an open door for hackers. I left the webinar feeling heartbroken for my fellow attendees. For cancer patients and their caregivers, attending such sessions requires immense courage. Asking questions is already difficult, and navigating cancer is challenging enough without the added terror of unseen malevolent actors. And this is just one example of an increasing trend.

When safety is compromised, fear is a natural response. Concerns about data breaches and its potential misuse are valid. However, letting fear immobilize us isn’t productive. In late 2018, founding members of patient advocacy communities decided to turn fear into action, giving rise to The Light Collective.

This patient-led collective is polling the community. We’re exploring a range of questions:

  • Do you worry about health information being shared outside of the community without permission?
  • Do you know how to protect your community members?
  • What are cross-site trackers and how are they impacting our privacy?
  • Our upcoming needs assessment survey and how we’ll leverage it to achieve greater digital rights for patients.
  • Strategies and tools to continue to protect your patient community.

Take The Next Step With Us.

Right now we’re polling patient communities to understand needs around privacy, data-sharing, and rights. Make your voice heard.

We invite you to participate in a 10-15 minute online poll focused on your use of online technologies and your thoughts on issues like privacy and policy. Go here to get started.