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- Title
Big Mistake: Knowing and Doing Better in Patient Engagement.
- Authors
Lynch, Holly Fernandez
- Abstract
Pushing back on policies favored by dying patients is a challenging endeavor, requiring tact, engagement, openness to bidirectional learning, and willingness to offer alternative solutions. It's easy to make missteps, especially in the age of social media. Holly Fernandez Lynch shares her experience learning with and from the amyotrophic lateral sclerosis (ALS) community, first as a caricature of an ivory tower bioethicist and more recently as a trusted advisor, at least for some. Patient‐engaged bioethics doesn't mean taking the view that patients are always right, but even when disagreement continues, progress is possible if academics and patients recognize the unique expertise each has to offer.
- Subjects
UNITED States; DRUG approval laws; HEALTH policy; PATIENT participation; INVESTIGATIONAL drugs; UNITED States. Food &; Drug Administration; AMYOTROPHIC lateral sclerosis
- Publication
Hastings Center Report, 2023, Vol 53, Issue 6, p2
- ISSN
0093-0334
- Publication type
Article
- DOI
10.1002/hast.1537