Peer Mentoring for Lyme Disease

Peer mentoring has achieved success in improving disease self-management in many chronic conditions (diabetes, asthma, etc.), but it has yet to be applied to the high-cost, high-need population of Lyme patients. Peer mentoring connects a (parent of a) Lyme patient to another (parent of a) Lyme patient. This type of patient-to-patient, or parent-to-parent, mentoring is much-needed and would improve patient clinical outcomes, reduce unnecessary healthcare utilization, reduce costs, and improve the Lyme patient (and family) experience. However, the challenges to build, manage and scale such a program are many.

Fortunately, significant work has been done to create technology to: (a) train mentors in critical coaching skills; (b) match mentors with patients/parents considering shared demographics, clinical experiences, geography, availability and more; (c) manage each peer-to-peer interaction in a HIPAA-compliant framework, (d) real-time guide mentors with talking points and resources; and (e) provide an integrated means of escalating issues to clinicians, community-based organizations, and regional/national programs. Our organization, InquisitHealth, with significant funding support from the NIH, has led the way in building, deploying and evaluating such technology-enabled peer-to-peer programs for other conditions like diabetes, asthma, pre-diabetes etc. Currently, with NIH R01 and PCORI funding, researchers and clinicians at Duke University, University of South Carolina and Atrium Health are building and evaluating new mentoring programs for diverse clinical conditions and patient populations in collaboration with InquisitHealth.

Given the immediate and critical need for peer mentoring for Lyme, we would propose creating and rigorously evaluating both a patient-to-patient, as well as a parent-to-parent, mentoring program for Lyme. Given our background and experience, we would leverage best practices from other robust peer mentoring programs we've built, our existing technology and training platforms, as well as our passionate clinical/research team to efficiently create a peer mentoring program that can be deployed nationally, help patients and families immediately, and demonstrate clinical efficacy such that this mentoring program could eventually be funded directly by health plans (similar to our other chronic disease mentoring programs).

Our team is extremely passionate about Lyme; two of our key team members are both still living with the long-term sequelae of Lyme disease. Peer mentoring programs need to exist to help Lyme patients and their families; the impact on costs and healthcare utilization can be significant, especially when considering the ability of mentoring to reduce the emotional toll as well as the social isolation caused by Lyme. We would welcome the opportunity to help build and evaluate such a program.