PATIENT-FOCUSED DRUG DEVELOPMENT AND PATIENT-CENTERED CLINICAL CARE- WORKING TOGETHER.
Author(s)
Robert McBurney, PhD, Co-Principal Investigator, iConquerMS™ - the MS Patient-Powered Research Network, Accelerated Cure Project for MS, Chestnut Hill, USA
Presentation Documents
PURPOSE: This workshop will spotlight current activities of patients, advocacy organizations and biopharmaceutical companies to collaborate on patient-focused drug development and on patient-centered clinical care. Workshop participants will be exposed to case studies in multiple sclerosis (MS) and invited to contribute their experiences of similar activities in other health conditions. The discussion leaders will present examples of efforts to include, in clinical trial protocols and in care settings, the outcome measures that matter most to patients and to engage people affected by health conditions in the design of clinical trials and care practices. The discussion will focus on best practices for linking patient-focused drug development and clinical care practices to ensure that new treatments have an optimal impact on outcomes for patients.
DESCRIPTION: Federica Balzani will present the experience of people living with MS and the current approaches to treating this disorder. Giampaolo Brichetto will present the PROMOPRO-MS initiative sponsored by the Italian MS Society to include, in clinical care, patient-reported outcomes (PROs) covering symptoms, disabilities and quality of life topics not usually collected systematically in care settings. The MS International Federation's initiative to harmonize the collection and use of PROs worldwide will be presented. Schiffon Wong will describe efforts within a biopharmaceutical company to undertake patient-focused drug development in MS and collaborative efforts to include the patient voice in the design of clinical trials in MS. Workshop attendees will contribute their perspectives to the following questions. “What are models for integrating the voice of people with medical conditions into drug development and healthcare practices?” “What are the best governance models for efforts in these areas?” “What approaches best achieve changes in the cultures of different stakeholders?” This workshop will be valuable to stakeholders who want to understand the current status and future prospects for establishing a healthcare eco-system that is patient-centric.
Conference/Value in Health Info
2018-11, ISPOR Europe 2018, Barcelona, Spain
Code
W14
Topic
Organizational Practices, Patient-Centered Research