The Utility of Patient Engagement in Drug Research and Development.

Drug development of transformative medicine has compounding complexity as researchers seek to address the varying needs of patients, providers, payers, and policymakers. Patient engagement frameworks and guidance are under development with health authorities that will further guide patient engagement in drug research. Patient insights have been captured in registries, online health networks, and other forums to inform evidence on disease progression and identify gaps in care. Patient representation and disease awareness have improved in partnership with patient advocacy groups that have led to patient-informed drug development. One effort to incorporate the patient voice into early research and development (R&D) is the Patient Insights Database (PID). Currently comprising 102 indications, the PID was developed to uncover trends in mixed methods research data, including direct patient interviews and evidence-based medicine. The database is used to understand patient symptomology, diagnosis, treatment, health-related quality of life (HR-QoL), economic burden, and hope for new therapies, based on patient interviews, patient testimonials, real-world evidence studies, and HR-QoL research. A deep understanding of the patient experience informs internal R&D decisions to bring forth healthcare solutions that address patient needs.