Embedding Patient Perspectives into Clinical Research┃Robert Joyce

Not Just Patients

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: [e-mail]

Bab

1. Introductions (00:00:00)

2. Role of an embedded patient researcher (00:01:25)

3. Benefits of patient involvement in research (00:08:10)

4. Different ways patients can be involved in research (00:15:56)

5. Role of patient organisations (00:23:08)

6. Challenges and initiatives for rare diseases (00:25:08)

7. Initiatives bringing patients closer to research (00:27:37)

8. Robert's story and personal challenges (00:29:10)

9. Barriers to patient involvement (00:33:55)

10. Overcoming barriers (00:35:44)

11. Engaging funders in patient involvement (00:44:22)

12. Advice for patients looking to get involved (00:51:30)

13. Advice for stakeholders looking to involve patients (00:53:01)

14. Reflections with Caitlin and Clarinda (00:55:38)