Patient Perspectives About Decisions to Share Medical Data and Biospecimens for Research.

ABSTRACT:

Importance

Patients increasingly demand transparency in and control of how their medical records and biospecimens are shared for research. How much they are willing to share and what factors influence their sharing preferences remain understudied in real settings.

Objectives

To examine whether and how various presentations of consent forms are associated with differences in electronic health record and biospecimen sharing rates and whether these rates vary according to user interface design, data recipients, data and biospecimen items, and patient characteristics.

Design, setting, and participants

For this survey study, a data and biospecimen sharing preference survey was conducted at 2 academic hospitals from May 1, 2017, to September 31, 2018, after simple randomiza

SUBMITTER: Kim J 

PROVIDER: S-EPMC6707015 | biostudies-literature | 2019 Aug

REPOSITORIES: biostudies-literature