In the wake of the Long Covid pandemic, the need for empowered patient advocates and leaders has never been more crucial. Recognizing this necessity, Solve M.E. embarked on a groundbreaking initiative known as the Long Covid Patient Leadership Advancement Network, or LC-PLAN. This program was designed to invest in the development of Long Covid community leaders by offering a patient-focused training curriculum tailored to prepare patients and caregivers for advisory research roles while enhancing patient engagement in Long Covid research.
We invited 11 highly qualified individuals to form the Curriculum Oversight Committee (COC). Comprised of Long Covid patients, caregivers, and experts in curriculum design, the COC played a pivotal role in shaping the program’s curriculum and direction. Through a collaborative effort, the COC developed a comprehensive training program syllabus, incorporating the diverse needs of the Long Covid community, research priorities, and patient input.
Following an iterative process of development and refinement, LC-PLAN underwent a successful “pilot cohort” test in the fall of 2023. The feedback garnered from this pilot phase was instrumental in enhancing the program’s curriculum and delivery methods, ensuring its effectiveness in meeting the needs of participants.
Finally, a rigorous selection process culminated in the invitation of applicants to form the first official LC-PLAN cohort! The training launched in January 2024 and ran for 12 weeks. The program itself consisted of 10 learning modules, each comprising pre-work and live Zoom workshops led by Subject Matter Experts.
Our 29 graduates of the program were recently celebrated in a virtual graduation ceremony, where they were lauded for their commitment and dedication to becoming advocates and leaders in the Long Covid community.
Fifteen LC-PLAN graduates are now trained and placed in influential positions across the NIH Recover Initiative, Columbia University, Veterans Affairs, and more. These leaders are not only contributing to pivotal studies but are also liaising with government agencies and major academic research centers. The presence of our LC-PLAN graduates at these crucial decision-making tables means that patients are guiding how research dollars are spent and changing the face of research for decades to come.
Feedback from LC-PLAN participants overwhelmingly praised the program’s effectiveness in developing community leaders and enhancing engagement in Long Covid research. Participants established a supportive and empowering community, and many look forward to staying connected beyond the program’s duration.
Looking ahead, the focus remains on fostering a robust network of LC-PLAN graduates to enhance patient engagement in Long Covid research. LC-PLAN stands as a testament to the power of collaboration and community-driven initiatives in addressing the challenges posed by Long Covid. As we navigate the road ahead, the journey with LC-PLAN continues to empower and uplift Long Covid patients, ensuring their voices are heard and their contributions valued in the pursuit of better outcomes for all.
