NDLI: Patient Perspectives on the Learning Health System: The Importance of Trust and Shared Decision Making.

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Patient Perspectives on the Learning Health System: The Importance of Trust and Shared Decision Making.

Content Provider	Scilit
Author	Kelley, Maureen James, Cyan Kraft, Stephanie Alessi Korngiebel, Diane Wijangco, Isabelle Rosenthal, Emily Joffe, Steven Cho, Mildred K. Wilfond, Benjamin Lee, Sandra Soo-Jin Alessi, Stephanie
Copyright Year	2015
Description	We conducted focus groups to assess patient attitudes toward research on medical practices in the context of usual care. We found that patients focus on the implications of this research for their relationship with and trust in their physicians. Patients view research on medical practices as separate from usual care, demanding dissemination of information and in most cases, individual consent. Patients expect information about this research to come through their physician, whom they rely on to identify and filter associated risks. In general, patients support this research, but worry that participation in research involving randomization may undermine individualized care that acknowledges their unique medical histories. These findings suggest the need for public education on variation in practice among physicians and the need for a collaborative approach to the governance of research on medical practices that addresses core values of trust, transparency, and partnership.
Related Links	http://europepmc.org/articles/pmc4821628?pdf=render https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4821628/pdf
ISSN	15265161
e-ISSN	15360075
DOI	10.1080/15265161.2015.1062163
Journal	American Journal of Bioethics
Issue Number	9
Volume Number	15
Language	English
Publisher	Informa UK Limited
Publisher Date	2015-08-25
Access Restriction	Open
Subject Keyword	Journal: American Journal of Bioethics Public Health and Health Services Learning Health System Shared Decision Making Trust Research Ethics Randomization
Content Type	Text
Resource Type	Article
Subject	Issues, Ethics and Legal Aspects Health Policy

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