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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
Medical Publications: From Access to Patient Authorship┃Avishek Pal
On this episode, we speak to Avishek Pal about how patients can better access and contribute to medical publications.
In parallel to his day job as Global Medical Director of Cell & Gene Therapy at Novartis, Avishek is affiliated with the Institute for Biomedical Ethics at University of Basel, investigating how medical research information in plain language may improve health literacy and autonomy in patients with chronic diseases.
Join us as we discuss how patients seek medical information, the role of generative AI, and initiatives fostering better patient access and involvement in medical literature.
Chapters:
- 0:00 - Introductions
- 1:48 - Patients' information-seeking patterns
- 4:38 - Role of health literacy
- 6:21 - Importance of accessing medical literature
- 8:44 - Information overload & reliability
- 15:24 - Plain-language summaries
- 26:43 - Publication bias in medical research
- 30:54 - AI for medical information
- 39:25 - Patients as authors
- 49:53 - Future of medical publications
- 53:15 - Advice for different stakeholders
- 56:44 - Reflections with Caitlin & Clarinda
Resources and abbreviations:
- Cochrane Library
- Pubmed
- Google Scholar
- CF - cystic fibrosis
- Avishek’s landscape analysis paper on plain-language resources
- Future Science Group, now a part of Taylor & Francis
- Becaris Publishing
- Envision Group
- A&E - accident and emergency
- CF Trust - Cystic Fibrosis Trust
- NHS - National Health Service, UK
- CDC - US Centres for Disease Control and Prevention
- NIH - National Institutes of Health, US
- FDA - US Food & Drug Administration
- EMA - European Medicines Agency
- Chat-GPT
- Avishek's paper on ethical considerations for plain-language materials
- EUPATI - European Patients’ Academy on Therapeutic Innovation
- PIF TICK
- Discern
- ICMJE (International Committee of Medical Journal Editors) authorship criteria
- Clarinda’s Patient Perspective paper
- Coalition S
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