We’re thrilled to announce that the Chan Zuckerberg Initiative (CZI) has awarded Solve M.E. a significant grant in support of our Long Covid Patient Leader Advancement Network (LC-PLAN), a groundbreaking program designed to bridge the gap between Long Covid research and patient needs.
With $247,500 in funding from CZI, Solve will train a network of patient leaders, scientists and other stakeholders with diverse backgrounds to enhance patient engagement in Long Covid research.
These trained patient representatives will ultimately create a targeted research agenda, a network of empowered patient-advocates and a guide to working with Long Covid patients for researchers. These critical tools will provide urgently-needed guidance on achieving patient-centered research in the Long Covid field, as well as help to empower communities in other related fields.
“For more than three decades, Solve M.E. has provided critical support to thousands of ME/CFS patients who are suffering from a misunderstood illness,” said Tania Simoncelli, Vice President for Science in Society at CZI. “As such, they were among the first to recognize that a significant subset of COVID-19 survivors exhibited ME/CFS symptoms, as well as the critical importance of advancing a patient-centric Long Covid research agenda. We are thrilled to support the program, which will catalyze research by building the capacity of Long Covid patient leaders to partner with researchers and amplify their work.”
Solve M.E. President and CEO Oved Amitay noted, “It remains essential to integrate the experience of Long Covid patients into research. Without addressing barriers to participation, patient engagement efforts will fail to represent the underserved populations who were disproportionately impacted by the pandemic. Thanks to the support of CZI, we can mobilize a new generation of patient advocates with the knowledge and support to make a difference.”
Through the CZI grant funding, Solve M.E. will create a replicable model designed to engage Long Covid patients in present and future research, which will include a custom curriculum. Patients who complete this curriculum will become part of the LC-PLAN, a group of patients and caregivers who are fully trained for patient advisory research roles. These individuals will convene with leading scientists and researchers to develop much-needed tools, including a research agenda, a core set of patient-reported outcomes and patient-preferred practices.
These materials will be invaluable guides to establish patient-driven input at the outset of research related to Long Covid, when crucial decisions that determine outcomes are being made. Additionally, the LC-PLAN Training Program itself will be made available to Long Covid patients, non-profit organizations and researchers when completed.
One of the most important tools of patient engagement in research is including patients at key agenda setting meetings. Patient Focused Drug Development (PFDD) meetings, like those hosted by the Food and Drug Administration (FDA) and other key stakeholders, provide an opportunity to hear directly from patients, their families, caregivers and patient advocates about the symptoms that matter most to them, the impact the disease has on daily life and experiences with currently available treatments. One of the goals of the LC-PLAN Training Program is to prepare patients to participate in such meetings and similar opportunities to elevate the voice of the patient community in drug development.
“Patients hold the key to transforming Long Covid research and care, so it’s essential to maintain the trust and inclusion of the patient community,” said Emily Taylor, Vice President of Advocacy and Engagement at Solve M.E. “Patient engagement in research is emerging as a priority of the Biden administration. In key publications, like the National Research Action Plan on Long Covid and the recent Health+ Long Covid report, patient contributions have been vital. Thanks to CZI, the new Solve M.E. LC-PLAN program will empower patients to be full partners in these efforts and other Long Covid research opportunities.”
Read our full press release here.