LSE Principal Investigator: Rocco Friebel
Start Date: 1 September 2023
End Date: 30 May 2028
Funder: Agency for Healthcare Research and Quality
Region: North America
Country: United States
Partner: Mount Sinai Hospital, New York City
Keywords: Chronic intestinal failure; Tele-mentoring; Healthcare disparities; Rare disease education
Chronic intestinal failure (CIF) is a rare condition that requires highly specialised care, yet many patients live in areas without access to expert physicians. This creates significant healthcare disparities, as patients may receive suboptimal treatment or face long journeys to reach specialist centres. The Last Mile LIFT-ECHO Project aims to address this challenge by using innovative virtual mentoring technology to bring expert knowledge directly to non-specialist physicians caring for CIF patients in their local communities.
The project employs a multi-phase approach combining rigorous research with practical implementation. First, researchers will develop and validate a standardised tool for measuring CIF outcomes through consultation 48 international experts. Second, the team will conduct a randomised trial involving 150 physicians managing 300-400 CIF patients, with physicians participating in virtual mentoring sessions featuring case-based learning and expert guidance. The study will measure whether this approach improves patient outcomes, reduces hospitalisations, and enhances quality of life compared to standard care. Key objectives are to:
1. Develop and validate an objective disease activity index for measuring CIF outcomes;
2. Demonstrate that virtual tele-mentoring of physicians through LIFT-ECHO improves patient clinical outcomes and quality of life; and
3. Create a scalable national dissemination framework for rare disease education.
By demonstrating that virtual mentoring can improve outcomes in rare diseases, the research will establish a model for addressing healthcare disparities in other uncommon conditions. Key outputs will include a validated assessment tool, an open-access repository of educational materials, and a replicable framework for implementing virtual mentoring programmes in other rare diseases. The ultimate vision is that every CIF patient will have access to expert care through their local physician, supported by the LIFT-ECHO network—truly delivering expertise to "the last mile" of healthcare.