Literature DB >> 33150424

Public attitudes toward an authorization for contact program for clinical research.

Nyiramugisha K Niyibizi1, Candace D Speight1,2, Charlie Gregor3, Yi-An Ko4, Stephanie A Kraft5,6, Andrea R Mitchell1,2, Bradley G Phillips7,8, Kathryn M Porter6, Seema K Shah9,10, Jeremy Sugarman11, Benjamin S Wilfond5,6, Neal W Dickert1,2.   

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.
© The Author(s) 2020. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For permissions, please email: journals.permissions@oup.com.

Entities:  

Year:  2021        PMID: 33150424      PMCID: PMC7883977          DOI: 10.1093/jamia/ocaa214

Source DB:  PubMed          Journal:  J Am Med Inform Assoc        ISSN: 1067-5027            Impact factor:   4.497


  9 in total

1.  Brief report: screening items to identify patients with limited health literacy skills.

Authors:  Lorraine S Wallace; Edwin S Rogers; Steven E Roskos; David B Holiday; Barry D Weiss
Journal:  J Gen Intern Med       Date:  2006-08       Impact factor: 5.128

Review 2.  More than the money: a review of the literature examining healthy volunteer motivations.

Authors:  Leanne Stunkel; Christine Grady
Journal:  Contemp Clin Trials       Date:  2010-12-10       Impact factor: 2.226

3.  Measuring how people view biomedical research: Reliability and validity analysis of the Research Attitudes Questionnaire.

Authors:  Jonathan D Rubright; Mark S Cary; Jason H Karlawish; Scott Y H Kim
Journal:  J Empir Res Hum Res Ethics       Date:  2011-03       Impact factor: 1.742

4.  Public views regarding the responsibility of patients, clinicians, and institutions to participate in research in the United States.

Authors:  Kevin P Weinfurt; Li Lin; Jeremy Sugarman
Journal:  Clin Trials       Date:  2019-07-01       Impact factor: 2.486

5.  Managing clinical research permissions electronically: A novel approach to enhancing recruitment and managing consents.

Authors:  Iain C Sanderson; Jihad S Obeid; Kapil Chalil Madathil; Katherine Gerken; Katrina Fryar; Daniel Rugg; Colin E Alstad; Randall Alexander; Kathleen T Brady; Anand K Gramopadhye; Jay Moskowitz
Journal:  Clin Trials       Date:  2013-08       Impact factor: 2.486

6.  A population-based approach for implementing change from opt-out to opt-in research permissions.

Authors:  Elizabeth A Marshall; Jim C Oates; Azza Shoaibi; Jihad S Obeid; Melissa L Habrat; Robert W Warren; Kathleen T Brady; Leslie A Lenert
Journal:  PLoS One       Date:  2017-04-25       Impact factor: 3.240

7.  Research participation preferences as expressed through a patient portal: implications of demographic characteristics.

Authors:  Jihad S Obeid; Azza Shoaibi; Jim C Oates; Melissa L Habrat; Chanita Hughes-Halbert; Leslie A Lenert
Journal:  JAMIA Open       Date:  2018-08-16

8.  Racial and ethnic differences in older adults' willingness to be contacted about Alzheimer's disease research participation.

Authors:  Christian R Salazar; Dan Hoang; Daniel L Gillen; Joshua D Grill
Journal:  Alzheimers Dement (N Y)       Date:  2020-05-08

9.  Audience segmentation as a strategy for enhancing the use of research registries for recruiting patients into clinical trials.

Authors:  Elizabeth Flood-Grady; Jiawei Liu; Samantha R Paige; Donghee Lee; David R Nelson; Elizabeth Shenkman; Deaven Hough; Janice L Krieger
Journal:  Contemp Clin Trials Commun       Date:  2019-12-24
  9 in total
  1 in total

1.  Parental Enrollment Decision-Making for a Neonatal Clinical Trial.

Authors:  Elliott Mark Weiss; Katherine F Guttmann; Aleksandra E Olszewski; Brooke E Magnus; Sijia Li; Scott Y H Kim; Anita R Shah; Sandra E Juul; Yvonne W Wu; Kaashif A Ahmad; Ellen Bendel-Stenzel; Natalia A Isaza; Andrea L Lampland; Amit M Mathur; Rakesh Rao; David Riley; David G Russell; Zeynep N I Salih; Carrie B Torr; Joern-Hendrik Weitkamp; Uchenna E Anani; Taeun Chang; Juanita Dudley; John Flibotte; Erin M Havrilla; Alexandra C O'Kane; Krystle Perez; Brenda J Stanley; Seema K Shah; Benjamin S Wilfond
Journal:  J Pediatr       Date:  2021-08-14       Impact factor: 4.406

  1 in total

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