Project ECHO
SCTPN Project ECHO HUB
SCTPN is a community partner with the University of New Mexico’s Project ECHO (Extension for Community Healthcare Outcomes) founded in 2003 by Sanjeev Arora, MD, in New Mexico to address the lack of availability of treatment for people with Hepatitis C Virus (HCV) in the state of NM. The Project ECHO successfully showed the benefits of the eLearning system for health care professionals at hospitals, family practices, and universities. From that, system Hubs were created throughout the state, and now Project ECHO has grown internationally. The Project ECHO mission is to demonopolize knowledge and amplify the capacity to provide best practice care for underserved people all over the world.
Improving access to quality medical care, particularly in underserved communities, is a primary goal SCTPN and its network of organizations shares with Project ECHO. SCTPN’s statewide and NE regional network will benefit greatly from establishing a Project ECHO model in many ways.
As we work on developing the SCTPN ECHO Hub, the intent is to increase our community engagement throughout our network of affiliates and chapters throughout New York State, the US Virgin Islands, as well as internationally in Belize, The Gambia, and Uganda. It just makes good sense.
We learn and teach through the use of didactics, case studies, develop training materials and toolkits to share best practices in delivering quality Care Coordination, Transitions, other programs and services for individuals and families living with inherited blood disorders.
The Project ECHO model is one of mutual respect and collaboration. We work to strengthen and enlarge long-standing relationships with hospitals, other health care entities, and higher education institutions to demonopolize knowledge by providing access to multidisciplinary teams of subject matter experts.
We invite pediatric and adult hematologists, nurses, nurse practitioners, social workers, psychologists, and practitioners of other disciplines who may be a part of care teams for individuals living with sickle cell disease and thalassemia to participate in the development of the SCTPN Project ECHO HUB.
SCTPN Seeks ECHO HUB Partners From:
Education
- College and Universities. No geographic limit.
Hospitals, Health Systems, and Community-Based Practices
- New York Metro Area
- Long Island: Nassau and Suffolk Counties
- Upstate Counties
- Rochester, NY: University of Rochester, and Highland Hospital.
- Albany: Albany Medical Center, and St. Peters Hospital.
- Buffalo: Hospitals TBA.
- Syracuse: NY: Hospitals TBA
Agencies
- NYCDOH, NYSDOH, Wadsworth Laboratory Newborn Screening (NBS). NYC and NYS Health & Hospital Services (NYC/NYSHHS), and NYS Medicare/Medicaid Services.
- Federal Agencies like Office of Minority Health and Health Disparities Prevention (OMH-HDP)
Community
Other community-based organizations, civic, social, fraternal, and professional/trade organizations. Cultural and affinity groups, and houses of worship.
Project ECHO Programs
- Nonprofit Organizational Development and Sustainability
- Writing Winning Grant Proposals
- Budgeting and Strategic Fund Development
- Care Coordination
- Community Health Worker Training
- CBO to Provider Education
- Policy Analysis and Political Advocacy
Join us, as we step through this liminal space into the future iteration of our expanding mission.
Resources
SCTPN provides advocacy and mediation for individuals and families with health care professionals, employers, educational institutions and legislators. Also, referral to qualified physicians, hospitals, support groups and other resources that may be needed.
Email us for more information info@sctpn.net or call (347) 533-8485 or Monday to Friday, 10:00 am to 5:00 pm.
New York Area Resources
- Parent To Parent, Metro New York (www.parenttoparentnys.org)
- New York Association of Black Psychologist (http://www.uh.edu/bapsiuh/id2.html)
- New York City Council (https://council.nyc.gov/)
- New York State Assembly (http://nysassembly.gov)
- New York State Senate (https://www.nysenate.gov/)
- House of Representatives (https://www.govtrack.us/congress/members/NY)
- New York Blooding Disorders Coalition (nysbdcoalition.org/)
- NYC Department of Health – https://www.nyc.gov/site/doh/index.page
- National Library of Medicine (http://www.nlm.nih.gov/portals/public.html)U.
- New York State Minority Health Council (https://www.health.ny.gov/community/minority/council.htm)
- New York Housing Authority – My NYCHA Self-Portal (https://www1.nyc.gov/site/nycha/section-8/self-service.page)
- Human Resource Administration – Access HRA (https://a069-access.nyc.gov/accesshra)
- The New York Blood Center (NYBC) can help ensure that people who are chronically transfused (e.g. sickle cell disease, thalassemia, leukemia, etc.) will have access to blood products precisely matched to each person whenever they need it. For additional information call NYBC at: 800-993-2526 or visit: https://nybloodcenter.org/. To register to donate https://nybc.org/sctpn.
National Resources / National Agencies
- American Disabilities Act (ADA) (https://www.ada.gov/)
- American Society of Gene & Cell Therapies (https://www.asgct.org/)
- Food & Drug Administration (FDA) Office of Minority Health (https://fda.gov/minorityhealth)
- FDA Statement – Center for Biologics Evaluation and Research (CBER) (https://fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm629493.htm)
- NIH Office of Rare Disease Research (https://rarediseases.info.nih.gov)
- NYC Public Advocate Office, Jumaane Williams (https://advocate.nyc.gov/about/the-public-advocate)
- Rare Diseases (www.rarediseases.org)
- Youth Adult Representatives for Rare Disease (YARR) https://everylifefoundation.org/young-adult-representatives/
- National Institute of Health/National Heart Lung Blood Institute (NIH/NHLBI)
Information and resources for inherited blood disorders and other rare diseases.