The Light Collective Protects Patient Rights and Data in the Digital Age
About The Light Collective
Founded in 2019, The Light Collective is a grassroots community of patient activists, clinicians, and health data experts. The nonprofit organization aims to advance the collective rights, interests, and voices of patient communities in relationship with health technology.
The Light Collective’s mission is significant for BISA, as many women, patients, and consumers often participate in social media support groups. The Light Collective motto is, “No aggregation without representation.”
TLC reminds everyone that sharing personal information online can have unintended effects when data is accessed without consent. The nonprofit has been essential in the effort to protect private health data and information.
“The work of The Light Collective is key to the safety of our personal health data in this digital age,” said Maria Gmitro, BISA founder and president.
Grateful for the nonprofit's education, research, and policy efforts, BISA advocates regularly attend The Light Collective Town Hall meetings to stay current on the latest challenges and solutions in health data privacy.
Health AI Rights for Patient Communities
The Light Collective has recently been working to represent the patient voice in AI policy, governance, and rights. In April, the nonprofit published the first-ever “Artificial Intelligence (AI) Rights for Patients.”
The organization supported an open public comment period to ensure the community is represented, with May 8, 2024, as the final deadline.
An excerpt about developing the AI patient guidelines from a recent LinkedIn post from Light Collective member Christine Von Raesfeld showcases the process and current draft.
Visit the website to learn more about the Patient AI Rights Initiative.
“The weight of responsibility to our communities as we dissected #algorithms, engaged in debate, and grappled with the profound implications of #AI, was not something we took lightly. Our first #framework, now available on #GitHub, represents a significant step forward in our mission and we are extremely proud of the work we have accomplished.
Our Guiding Principles
1. Patient-Led Governance: Our patients are at the helm. Their insights shape our decisions.
2. Independent Duty To Patients: Health AI must protect patients, as a top priority.
3. Transparency: No hidden agendas. Patients deserve clarity.
4. Self Determination: Patients have the right to make InformedDecisions about how AI is used in healthcare systems
5. Identity Security and Privacy: Safeguarding PatientData is paramount.
6. Right of Action: When AI falls short, patients must have recourse.
7. Shared Benefit: AI serves all—patients, providers, and technology in harmony and benefits should reflect that.
But #principles alone won't suffice so we've opened the door for #PublicComment. Patients, providers and policymakers are all are invited to help us shape the future use of this framework, intended to be a living document fueled by insight and guidance received.”