PLATINUM2023

Light Collective Inc

No aggregation without representation.

aka The Light Collective   |   Eugene, OR   |  https://lightcollective.org/

Mission

We are on a mission to advance the collective rights, interests, and voices of patient communities in health technology.

Ruling year info

2020

Co-Founder & Board President

Andrea M Downing

Co-Founder

Valencia Robinson

Main address

1430 Willamette St. #591

Eugene, OR 97401 USA

Show more contact info

EIN

84-1739777

NTEE code info

Cancer (G30)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

There’s a participation problem in public health. The digital health transformation that was supposed to democratize public services has, instead, created a new layer of gatekeepers: digital platforms. The patient populations that fall through the cracks of the healthcare system increasingly turn to their peers on social media for knowledge, support, and ways to innovate in healthcare. Online patient communities have proven the value of participation in care, but they’ve also proven the vulnerabilities of digital health products. Patients’ digital interactions create data footprints, and that data can be manipulated for misinformation, in data breaches, and for outright exploitation and harassment. These vulnerabilities aren’t only threats to patients, they undermine the trust that patients and caregivers place in digital interventions.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Advance collective rights for patient communities in healthcare technology.

The Light Collective is working with peer support groups to fundamentally change the relationship between vulnerable communities and tech platforms where they reside. As a first step we have drafted a set of rights for peers support communities online.

Through this program we draft and maintain patient-driven rights for health communities that engage with technology - whether on social media or through a digital health platform.

Find out more here: https://lightcollective.org/trust/

Population(s) Served
Health

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of program graduates

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with diseases and illnesses, People with disabilities

Related Program

Advance collective rights for patient communities in healthcare technology.

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Number of research studies conducted

This metric is no longer tracked.
Totals By Year
Related Program

Advance collective rights for patient communities in healthcare technology.

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Number of research or policy analysis products developed, e.g., reports, briefs

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of new advocates recruited

This metric is no longer tracked.
Totals By Year
Related Program

Advance collective rights for patient communities in healthcare technology.

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

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

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

  • Which of the following feedback practices does your organization routinely carry out?

  • What challenges does the organization face when collecting feedback?

Financials

Light Collective Inc
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Operations

The people, governance practices, and partners that make the organization tick.

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lock

Connect with nonprofit leaders

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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Light Collective Inc

Board of directors
as of 05/19/2023
SOURCE: Self-reported by organization
Board co-chair

Andrea Downing

The Light Collective


Board co-chair

Valencia Robinson

The Light Collective

Term: 2020 - 2024

Jill Holdren

The Light Collective

Valencia Robinson

The Light Collective and Women of Color Wellness Organization

Mike Mittelman

American Living Organ Donor Fund

Chethan Sarabu

Stanford University

Muhammed Chebli

Nextgen Healthcare

Christine Von Raesfeld

People with Empathy

Andrea Downing

The Light Collective

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Not applicable
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 5/18/2023

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person with a disability

The organization's co-leader identifies as:

Race & ethnicity
Black/African American
Gender identity
Female, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 05/10/2023

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Policies and processes
  • We use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.