Not Just Patients
Hello and welcome to Not Just Patients, a podcast where we break barriers to meaningful patient involvement in healthcare.
We’re your hosts, Caitlin Rich and Clarinda Cerejo. We’re both rare disease patients and qualified patient experts. And we are so much more.
Join us and our guests as we challenge patient stereotypes, highlight successful collaborations in healthcare, and share energizing tales of turning adversity into advocacy.
Not Just Patients
Embedding Patient Perspectives into Clinical Research┃Robert Joyce
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 - Introductions
1:25 - Role of an embedded patient researcher
8:10 - Benefits of patient involvement in research
15:56 - Different ways patients can be involved in research
23:08 - Role of country/disease-specific patient organisations
25:08 - Challenges and initiatives for rare diseases
27:37 - Initiatives to bring patients closer to research
29:10 - Robert's story and personal challenges
33:55 - Challenges to patient involvement
35:44 - What needs to be done to overcome barriers
44:22 - Engaging funders in patient involvement
51:30 - Advice for patients looking to get involved
53:01 - Advice for stakeholders looking to involve patients
55:38 - Reflections with Caitlin and Clarinda
Have feedback or suggestions for us? We'd love to hear from you!
Website: notjustpatients.com
LinkedIn: Not Just Patients
Email: info@notjustpatients.com
