How the Patient Voice Can Help Shape The Perfect Trial Design with Robert Joyce
Meet Robert Joyce - a patient advocate living with multiple chronic illnesses who has turned his experiences into a powerful voice for change in healthcare. In this episode, Robert and Maya explore the complex journey of living with secondary progressive multiple sclerosis, asthma, sarcoidosis, and chronic pain. They discuss the critical importance of including patient voices in clinical trial design, the impact of local standard of care on treatment decisions, and the need for improved communication and transparency in healthcare. Robert's insights shed light on the real-world implications of reimbursement rules, access to treatment, and the diversity of patient experiences in clinical trials.
- (00:00) - Introduction and Background
- (03:43) - The Importance of Including the Patient Voice
- (07:31) - Challenges in Accessing Treatment and Standard of Care
- (10:47) - Cultural and Systemic Differences in Patient Engagement
- (17:26) - Choosing between clinical trial and Standard of care
- (22:17) - Choosing Between Established Treatment and Clinical Trials
- (25:20) - The Impact of Standard of Care on Clinical Trial Participation
- (28:15) - The Need for Transparent Communication and Patient Involvement
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