Building capacity for patient-engagement in neuromuscular disease research: A network project

Patient-oriented research is increasingly recognized as an important methodology in health sciences. Benefits of patient engagement include aligning research priorities to those living with health conditions, developing better recruitment strategies and protocols, and integrating findings more meaningfully. However, for research teams to work well with patient-partners, training for all stakeholders is needed. While training exists, none consider the uniqueness of the neuromuscular disease experience. To address this gap, our team of researchers, clinicians, and patient-partners collaborated to increase the capacity for patient-engagement in neuromuscular disease research. Our methods included: 1) conducting a landscape of available resources, and 2) using adult education principles and a backwards design process to develop unique training modules. The result is an online platform with three modules focusing on the neuromuscular disease context, addressing the inclusion, diversity, equity, and accessibility needs of those with neuromuscular diseases, and building teamwork skills. Early evaluation of the first two modules indicates high satisfaction and knowledge gain. Through this process, we have learned about the barriers of patient-oriented research, how to support the required system culture shift, and how to plan for long-term sustainability.