On this episode, we talk to Robert Joyce about the critical role of patient involvement in clinical research and the various ways in which patients can bring rich perspectives to the research and development process.Robert has lived with chronic illness all his life, but following a traffic accident in 2014, he was left with debilitating symptoms. No longer able to work, Robert started his blog, a 30 minute life, to share his experiences, and also has a podcast of the same name. In 2019, Robert also became involved in clinical research, eventually earning the title of Embedded Patient Researcher and becoming a co-applicant on the trial of a therapy for Multiple Sclerosis. Unfortunately he was not permitted to continue in this role, but is now an advocate for more patients to be involved in research.Chapters:0:00 - Introductions1:25 - Role of an embedded patient researcher8:10 - Benefits of patient involvement in research15:56 - Different ways patients can be involved in research23:08 - Role of country/disease-specific patient organisations25:08 - Challenges and initiatives for rare diseases27:37 - Initiatives to bring patients closer to research29:10 - Robert's story and personal challenges33:55 - Challenges to patient involvement35:44 - What needs to be done to overcome barriers44:22 - Engaging funders in patient involvement51:30 - Advice for patients looking to get involved53:01 - Advice for stakeholders looking to involve patients55:38 - Reflections with Caitlin and ClarindaHave feedback or suggestions for us? We'd love to hear from you!Website: notjustpatients.comLinkedIn: Not Just PatientsEmail: [email protected]

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