The Light Collective

The Light Collective (TLC) is organizing patients to understand, define, and advocate for collective digital rights in medical care, research, and services. TLC’s founders are advocates and peer-support providers who, while running a large Facebook group for breast cancer patients, began to realize the myriad risks they faced from the business models and basic technology infrastructure they relied upon. That initial realization about digital safety sparked a deepening inquiry into the flaws of digital governance in healthcare platforms, the need for systems that realize patient digital rights, and how to begin to build them.

With recent philanthropic support, TLC is scoping new models for patient-governed digital infrastructure and building capacity among patients and peer groups to organize for their own digital civil rights. Digital Public is working with TLC to add data governance expertise, develop their organizational strategy, and provide legal counsel as TLC continues to grow from a small, informal group to an effective, multi-stakeholder advocacy coalition. 

Even though virtual support groups for people with shared medical conditions were among the earliest examples of online community, historically most patients have had few ways to organize or act collectively—whether for their digital rights or their rights in general. At the same time, digital governance advocates don’t have obvious or easy ways to engage with the digital platform providers who host online groups. Even for the many medical service providers and digital platforms seeking to work closely with patient communities — as customers, users, or research participants, for instance —  the gaps in expertise, clear ways to seek redress, and the absence of an established forum for negotiation make robust collaboration extremely rare.

While millions of people use social media platforms for medical support—and millions more are impacted by the accelerating use of technology in medicine — the patient experience is still usually individualized and disconnected. Meanwhile, patient advocacy and peer support groups tend to be small or informal, and more focused on patients’ urgent, tangible needs than on questions of technology or digital governance. The Light Collective is building a movement to fill these gaps in capacity and opportunity to advocate for practical, accessible rights mechanisms, led by some of the most effective medical digital rights activists and organizers in the world. 

Our work with TLC has focused on two of their key goals: to help patient advocates understand digital civil rights and develop organizing strategies and tactics, and to help establish well-governed data sharing relationships with medical technology service providers, including guidance for similar groups interested in negotiating for new rights for patients. Over several years of partnership, our collaboration with TLC has evolved from defining core principles of digital and data governance, to supporting the organization’s strategy and vision to create a patient-led organizing engine for accessible digital rights in the provision of medical services. 

We have helped TLC further develop the expertise, resources, and relationships necessary to realize these goals, enabling patients and advocates to renegotiate their participation in the design and practice of medical services. Amid a time of intersecting health crises, is the outer limit of effective medicine - or, as shareholders might describe it, the market cap for healthcare service providers. In other words, both patients, healthcare service providers, and even healthcare technology platforms all have an interest in expanding their information sharing relationships - however the terms and conditions of those relationships vary widely, based on histories of abuse and exploitation. TLC are proactive, constructive advocates for building the digital infrastructure of patient trust based on integrity, transparency and patient participation in the data governance decisions that impact patients the most.