Project Inform
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| Project Inform | |
|---|---|
| Name | Project Inform |
| Formation | 1985 |
| Type | Nonprofit organization |
| Headquarters | San Francisco, California |
| Region served | United States; global advocacy networks |
Project Inform
Project Inform is a nonprofit health organization founded to improve treatment access, accelerate biomedical research, and provide community education for people affected by HIV/AIDS and hepatitis C. The organization has worked at the intersection of activism, clinical research, and public policy, engaging with scientific institutions, patient communities, and regulatory agencies. Its activities have included patient-centered research advocacy, direct medical services navigation, and instructional outreach to clinicians and affected populations.
History
Project Inform was established in 1985 in San Francisco during the height of the HIV/AIDS epidemic in the United States, amid contemporaneous activism by groups such as ACT UP and People With AIDS San Francisco. Early in its history the organization collaborated with clinical investigators at institutions including University of California, San Francisco and community clinics influenced by models from San Francisco General Hospital. Staff and volunteers engaged with regulatory developments from the Food and Drug Administration and trial designs at the National Institutes of Health. During the 1990s Project Inform participated in coalitions responding to breakthrough therapies emerging from research at centers like Massachusetts General Hospital and international conferences such as the International AIDS Conference. Over subsequent decades it expanded work on viral hepatitis alongside partnerships with researchers linked to Centers for Disease Control and Prevention policy initiatives and global programs influenced by the World Health Organization.
Mission and Programs
Project Inform’s mission centers on accelerating access to life-saving treatments and empowering affected communities through information and advocacy. Programmatic work has spanned treatment literacy curricula modeled after efforts from the San Francisco Department of Public Health, treatment access campaigns akin to those run by Treatment Action Group, and peer navigation initiatives reflecting practices from Fenway Health. The organization has developed materials used by clinicians connected to networks such as the HIV Research Network and drawn on methodological guidance from groups like the Cochrane Collaboration for evidence summaries. Programs have addressed intersections with criminal justice systems informed by advocacy from organizations such as the ACLU and social services frameworks linked to Health Resources and Services Administration programs.
Advocacy and Policy Impact
Project Inform has influenced regulatory and policy debates at agencies including the Food and Drug Administration and legislative arenas such as the United States Congress. The group has testified in public advisory committee forums similar to those convened by the FDA AIDS Advisory Committee and filed briefs aligning with precedents set in litigation involving organizations like Lambda Legal and Human Rights Campaign when advocating for nondiscriminatory access to care. Project Inform’s policy work contributed to expansions of treatment access in public programs related to policy reforms promoted by the Ryan White HIV/AIDS Program and has engaged with international procurement and pricing discussions shaped by agreements involving the World Trade Organization and initiatives coordinated by the Global Fund to Fight AIDS, Tuberculosis and Malaria.
Research and Medical Services
Project Inform has participated in shaping clinical trial design and compassionate use pathways in collaboration with investigators from institutions such as Johns Hopkins Hospital and Harvard Medical School researchers. The organization has produced treatment guides incorporating findings from randomized controlled trials published in journals connected to editorial boards at The Lancet and New England Journal of Medicine. It has supported patient enrollment strategies similar to practices at the HIV Vaccine Trials Network and liaised with laboratory scientists at centers like the Broad Institute to translate basic science into community-facing summaries. Medical services navigation included referrals to specialty clinics within systems such as Kaiser Permanente and coordination with syringe services models championed by San Francisco AIDS Foundation partners.
Community Outreach and Education
Education initiatives have targeted affected populations through workshops, printed materials, and digital resources reflecting pedagogical approaches used by CDC Division of HIV/AIDS Prevention and community education campaigns like those from Terrence Higgins Trust. Outreach engaged peer educators trained using curricula akin to those from Positive Women’s Network–USA and collaborated with faith-based outreach efforts modeled after programs run by organizations such as Catholic Charities USA. Project Inform also contributed to multilingual resources paralleling translation efforts supported by Immigrant Legal Resource Center partnerships and disseminated updates timed to major scientific meetings like the Conference on Retroviruses and Opportunistic Infections.
Funding and Partnerships
The organization secured funding from a mix of private foundations and community philanthropy similar to grants awarded by the Gates Foundation, smaller program grants reminiscent of support from the ViiV Healthcare Positive Action initiatives, and donor-supported campaigns comparable to those run by amfAR. Partnerships have included collaborations with academic centers such as Stanford University and cooperative projects with advocacy networks like National Alliance of State and Territorial AIDS Directors. Corporate partnerships followed models of institutional engagement seen with pharmaceutical companies represented at forums like the International AIDS Society conferences, while maintaining independence consistent with nonprofit governance standards advocated by Independent Sector.
Awards and Recognition
Project Inform and its leadership have received recognition from community and scientific bodies echoing honors bestowed by groups such as the San Francisco AIDS Foundation and lifetime achievement acknowledgments similar to awards from the National Institutes of Health advisory communities. Staff and volunteers have been invited to speak at conferences including the International AIDS Conference and have been cited in policy reports produced by organizations like the Kaiser Family Foundation.