2018 SLAS Americas Sample Management Symposium

Patients have always been the ultimate beneficiary of drug discovery and development efforts, but their role in the research process itself has traditionally been limited to that of study participant. However, in recent years, patients and patient advocacy organizations have begun playing a wider variety of roles in therapeutic development efforts. For instance, patients are providing their expertise as people living with medical conditions to assist with identifying unmet needs and provide advice on clinical trial designs. Patient organizations are funding significant efforts to create research resources and bring new drugs to market. Patients are also engaging in new opportunities to provide input into the regulatory review and approval process for novel therapies. The emergence of these initiatives and interactions has spurred a number of supporting efforts to document trends in patient engagement, determine best practices, and define the value of these interactions for all stakeholders.  This presentation will provide an overview of the patient engagement landscape and describe how new forms of collaboration between patients and drug development organizations are proving to be mutually beneficial. Specific examples will be drawn from the activities of a patient-founded research-focused organization for multiple sclerosis, including the establishment of an open-access biorepository and an Internet-based patient-centered research network.