Public attitudes toward an authorization for contact program for clinical research

Nyiramugisha K. Niyibizi*, Candace D. Speight, Charlie Gregor, Yi An Ko, Stephanie A. Kraft, Andrea R. Mitchell, Bradley G. Phillips, Kathryn M. Porter, Seema K. Shah, Jeremy Sugarman, Benjamin S. Wilfond, Neal W. Dickert

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

2 Scopus citations

Abstract

We conducted an online experimental survey to evaluate attitudes toward an authorization for contact (AFC) program allowing researchers to contact patients about studies based on electronic record review. A total of 1070 participants were randomly assigned to 1 of 3 flyers varying in design and framing. Participants were asked to select concerns about and reasons for signing up for AFC. Logistic regression and latent class analysis were conducted. The most commonly selected concerns included needing more information (43%), privacy (40%), and needing more time to think (28%). A minority were not interested in participating in research (16%) and did not want to be bothered (15%). Latent class analysis identified clusters with specific concerns about privacy, lack of interest in research, and not wanting to be bothered. A novel flyer with simple and positive framing was associated with lower odds of both not wanting to be bothered (P =. 01) and not being interested in research (P =. 01). Many concerns about AFC programs appear nonspecific. Addressing privacy, lack of interest in research, and not wanting to be bothered warrant further study as ways to enhance recruitment.

Original languageEnglish (US)
Pages (from-to)354-359
Number of pages6
JournalJournal of the American Medical Informatics Association
Volume28
Issue number2
DOIs
StatePublished - Feb 1 2021

Keywords

  • Clinical research
  • Electronic health record
  • Recruitment

ASJC Scopus subject areas

  • Health Informatics

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