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

doi:10.1093/jamia/ocaa214

Public attitudes toward an authorization for contact program for clinical research

J Am Med Inform Assoc. 2021 Feb 15;28(2):354-359. doi: 10.1093/jamia/ocaa214.

Authors

Nyiramugisha K Niyibizi¹, Candace D Speight^{1

2}, Charlie Gregor³, Yi-An Ko⁴, Stephanie A Kraft^{5

6}, Andrea R Mitchell^{1

2}, Bradley G Phillips^{7

8}, Kathryn M Porter⁶, Seema K Shah^{9

10}, Jeremy Sugarman¹¹, Benjamin S Wilfond^{5

6}, Neal W Dickert^{1

2}

Affiliations

¹ Georgia Clinical and Translational Science Alliance, Emory University School of Medicine, Atlanta, Georgia, USA.
² Division of Cardiology, Department of Medicine, Emory University School of Medicine, Atlanta, Georgia, USA.
³ Institute of Translational Health Sciences, University of Washington, Seattle, Washington, USA.
⁴ Department of Biostatistics and Bioinformatics, Emory University Rollins School of Public Health, Atlanta, Georgia, USA.
⁵ Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington, USA.
⁶ Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute, Seattle, Washington, USA.
⁷ Department of Clinical and Administrative Pharmacy, University of Georgia College of Pharmacy, Athens, Georgia, USA.
⁸ Biomedical and Health Sciences Institute, University of Georgia Office of Research, Athens, Georgia, USA.
⁹ Research Ethics, Stanley Manne Research Institute, Ann and Robert Lurie Children's Hospital of Chicago, Chicago, Illinois, USA.
¹⁰ Department of Pediatrics, Northwestern Feinberg School of Medicine, Chicago, Illinois, USA.
¹¹ Johns Hopkins Berman Institute of Bioethics, Baltimore, Maryland, USA.

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.

Publication types

Research Support, N.I.H., Extramural

MeSH terms

Adult
Aged
Attitude to Health*
Biomedical Research*
Female
Humans
Latent Class Analysis
Logistic Models
Male
Middle Aged
Patient Selection*
Privacy
Public Opinion*
Surveys and Questionnaires
Young Adult

Abstract

Publication types

MeSH terms

Grants and funding