Light Collective Inc

There are a strong and growing number of digital public health and social support tools proactively seeking a range of patient participation. Some platforms want user experience feedback from patient communities, toward improving accessibility and usability; others want to engage patients as data subjects and rightsholders, taking a human-centered approach to data. Until recently, though, there wasn’t anywhere for them to go. Patient support communities are powerful, but often decentralized and informal. Peer support groups are an ideal community organizing unit to support the kinds of patient-led public health input, rights negotiations, and data governance that the digital public health community needs. Patient communities need legal, organizational, and technical tools (and capacity) to enable peer support groups to play this role in the broader health community.

The Light Collective serves the leaders and organizers of patient communities on social media and their constituencies. We call ourselves “community data organizers.” Because online patient communities and their leadership need a rigorous project to redress the outsize power of tech companies and other data holders in research, we are focused first on ways to address the considerable harm caused by data breaches, medical misinformation, and targeted harassment of vulnerable health populations on social media.

1. Develop a Civic Data Trust: We aim to work with our legal counsel at Digital Public to establish fiduciary data governance infrastructure for the selected patient communities who join the pilot cohort. We will do this by drawing from established frameworks of civic data trust and learning health network models.

2. Evaluate & Negotiate Partnerships: Expand upon and implement the framework for fair partnerships and community governance developed in our 2019 RWJF-funded project into a more formalized civic trust and learning health network. We’re testing whether platforms are willing to negotiate the terms patient communities define and whether we can partner effectively with clinical and research institutions.

3. Test feasibility of this new legal model: As we pilot the civic data trust through participation with an initial cohort, we will evaluate the feasibility of negotiations between patient communities and data holders. With patient community leaders represented by legal counsel in negotiations with tech platforms and researchers, our central question is: can we make fair, ethical, and sustainable deals between the patient communities we represent and data holders? Through this process, we are also exploring how effectively we can engage patient community members in these processes through use of online community health workers, community leaders, and other outreach and education efforts.

3. Develop community roadmap & sustainability plan: A critical part of this project is to develop a roadmap for patient communities interested in pursuing self-governance of the data they produce and establishing mutually-beneficial networks of partnerships with other relevant entities. The data trust will need to develop a plan for financial sustainability in the long term. Before we can address that challenge, we need to design and build the trust and actually get it established.

1. Funding from Robert Wood Johnson Foundation
2. Interdisciplinary team of community leaders and experts
3. We have had the leaders and organizers of communities on social media representing a patient population of over 190,000 people reach out with interest in resources and membership with the Light Collective. ‘Ground zero’ for our work has been the hereditary breast and ovarian cancer community. However The Light Collective has identified a broader need from community leaders who represent diverse health conditions ranging from rare disease, to Long Covid peer support groups have reached out to us with interest to participate in activities of The Light Collective.

By The Numbers:

- Support groups representing 164,414 patients on social media reached out to The Light Collective for support.
- 9 ePatient Leaders Voted onto Board
- 900+ Hours of Outreach on Fair Partnerships
- 4 new key partners
- 2 Med Student Classes Taught
- 20 Virtual Webinars on Privacy, ePatient Rights, Data Literacy, & Cybersecurity
- 3 White Papers
- 2 Public Comments to ONC and FTC
- 3 Short Documentary films