Development of a multi-component intervention to promote participation of Black and Latinx individuals in biomedical research.

Research participation eConsent health disparities intervention

Journal

Journal of clinical and translational science
ISSN: 2059-8661
Titre abrégé: J Clin Transl Sci
Pays: England
ID NLM: 101689953

Informations de publication

Date de publication:
2021
Historique:
received: 04 02 2021
revised: 28 05 2021
accepted: 01 06 2021
entrez: 9 8 2021
pubmed: 10 8 2021
medline: 10 8 2021
Statut: epublish

Résumé

Barriers to research participation by racial and ethnic minority group members are multi-factorial, stem from historical social injustices and occur at participant, research team, and research process levels. The informed consent procedure is a key component of the research process and represents an opportunity to address these barriers. This manuscript describes the development of the Strengthening Translational Research in Diverse Enrollment (STRIDE) intervention, which aims to improve research participation by individuals from underrepresented groups. We used a community-engaged approach to develop an integrated, culturally, and literacy-sensitive, multi-component intervention that addresses barriers to research participation during the informed consent process. This approach involved having Community Investigators participate in intervention development activities and using community engagement studios and other methods to get feedback from community members on intervention components. The STRIDE intervention has three components: a simulation-based training program directed toward clinical study research assistants that emphasizes cultural competency and communication skills for assisting in the informed consent process, an electronic consent (eConsent) framework designed to improve health-related research material comprehension and relevance, and a "storytelling" intervention in which prior research participants from diverse backgrounds share their experiences delivered via video vignettes during the consent process. The community engaged development approach resulted in a multi-component intervention that addresses known barriers to research participation and can be integrated into the consent process of research studies. Results of an ongoing study will determine its effectiveness at increasing diversity among research participants.

Identifiants

pubmed: 34367678
doi: 10.1017/cts.2021.797
pii: S2059866121007974
pmc: PMC8327553
doi:

Types de publication

Journal Article

Langues

eng

Pagination

e134

Subventions

Organisme : NCATS NIH HHS
ID : UL1 TR003096
Pays : United States
Organisme : NCATS NIH HHS
ID : U01 TR001812
Pays : United States
Organisme : NCATS NIH HHS
ID : UL1 TR001453
Pays : United States
Organisme : NIA NIH HHS
ID : P20 AG068024
Pays : United States
Organisme : NCATS NIH HHS
ID : UL1 TR001417
Pays : United States

Informations de copyright

© The Association for Clinical and Translational Science 2021.

Déclaration de conflit d'intérêts

The authors have no conflicts of interest to declare.

Références

Clin Trials. 2015 Dec;12(6):692-5
pubmed: 26178662
Contemp Clin Trials. 2013 Sep;36(1):25-31
pubmed: 23747986
Camb Q Healthc Ethics. 2008 Spring;17(2):206-15
pubmed: 18312735
N Engl J Med. 2017 Feb 16;376(7):613-615
pubmed: 28103146
Contemp Clin Trials. 2016 Jul;49:65-9
pubmed: 27327780
J Health Commun. 2011 Aug;16(7):686-97
pubmed: 21541875
Patient Educ Couns. 2004 Mar;52(3):341-8
pubmed: 14998605
Acad Med. 2013 Aug;88(8):1178-86
pubmed: 23807104
J Clin Transl Sci. 2018 Aug;2(4):201-207
pubmed: 30820357
J Law Med Ethics. 2018 Mar;46(1):30-43
pubmed: 30093794
BMC Med Res Methodol. 2014 Mar 25;14:42
pubmed: 24669751
Am J Public Health. 2014 Feb;104(2):e16-31
pubmed: 24328648
J Clin Transl Sci. 2020 Apr 03;4(4):345-353
pubmed: 33244416
Med Care. 2017 Sep;55 Suppl 9 Suppl 2:S50-S58
pubmed: 28806366
J Biomed Inform. 2009 Apr;42(2):377-81
pubmed: 18929686
J Transcult Nurs. 2016 Sep;27(5):456-63
pubmed: 25754929
Acad Med. 2015 Dec;90(12):1646-50
pubmed: 26107879
BMC Health Serv Res. 2014 Feb 26;14:89
pubmed: 24568690
Cancer Control. 2014 Jul;21(3):209-14
pubmed: 24955704
Public Health Rep. 2003 Jul-Aug;118(4):293-302
pubmed: 12815076
J Natl Med Assoc. 2000 Dec;92(12):563-72
pubmed: 11202759
Med Care. 2017 Feb;55(2):117-124
pubmed: 27579914
J Pers Soc Psychol. 2000 Nov;79(5):701-21
pubmed: 11079236
JAMA. 2011 Sep 7;306(9):978-88
pubmed: 21900138
Patient Educ Couns. 2006 Oct;63(1-2):104-9
pubmed: 16242898
PLoS One. 2018 Dec 31;13(12):e0209912
pubmed: 30596749
BMC Med Ethics. 2013 Jul 23;14:28
pubmed: 23879694
Rev Bras Epidemiol. 2014 Dec;17(4):842-51
pubmed: 25388485
Bull World Health Organ. 2015 Mar 1;93(3):186-98H
pubmed: 25883410
Acad Med. 2013 Jun;88(6):872-83
pubmed: 23619073
Ann Behav Med. 2007 Jun;33(3):221-35
pubmed: 17600449
Health Educ Behav. 2007 Oct;34(5):777-92
pubmed: 17200094
J Immigr Minor Health. 2016 Apr;18(2):447-53
pubmed: 25822567
Med Care Res Rev. 2000;57 Suppl 1:181-217
pubmed: 11092163
N Engl J Med. 2017 Mar 2;376(9):856-867
pubmed: 28249147
Perspect Clin Res. 2015 Oct-Dec;6(4):173-4
pubmed: 26623385
Prog Community Health Partnersh. 2018;12(3):247-262
pubmed: 30581168
Ann Intern Med. 2011 Jan 18;154(2):77-84
pubmed: 21242364
Simul Healthc. 2012 Oct;7(5):308-20
pubmed: 23032751
Arch Gerontol Geriatr. 2014 Jul-Aug;59(1):18-24
pubmed: 24745811
Contemp Clin Trials Commun. 2016 Feb 17;3:32-38
pubmed: 29736454
Qual Saf Health Care. 2004 Oct;13 Suppl 1:i51-6
pubmed: 15465956

Auteurs

Maria I Danila (MI)

Department of Medicine, Division of Clinical Immunology/Rheumatology, University of Alabama at Birmingham School of Medicine, Birmingham, AL, USA.
University of Alabama at Birmingham Center for Clinical and Translational Science, University of Alabama at Birmingham School of Medicine, Birmingham, AL, USA.

Jeroan J Allison (JJ)

UMass Center for Clinical and Translational Science, University of Massachusetts Medical School, Worcester, MA, USA.
Department of Population and Quantitative Health Sciences, University of Massachusetts Medical School, Worcester, MA, USA.

Karin Valentine Goins (KV)

UMass Center for Clinical and Translational Science, University of Massachusetts Medical School, Worcester, MA, USA.
Department of Population and Quantitative Health Sciences, University of Massachusetts Medical School, Worcester, MA, USA.

Germán Chiriboga (G)

UMass Center for Clinical and Translational Science, University of Massachusetts Medical School, Worcester, MA, USA.
Department of Population and Quantitative Health Sciences, University of Massachusetts Medical School, Worcester, MA, USA.

Melissa Fischer (M)

Department of Population and Quantitative Health Sciences, University of Massachusetts Medical School, Worcester, MA, USA.
Department of Medicine, University of Massachusetts Medical School, Worcester, MA, USA.

Melissa Puliafico (M)

Department of Population and Quantitative Health Sciences, University of Massachusetts Medical School, Worcester, MA, USA.
Department of Medicine, University of Massachusetts Medical School, Worcester, MA, USA.

Amy S Mudano (AS)

Department of Medicine, Division of Clinical Immunology/Rheumatology, University of Alabama at Birmingham School of Medicine, Birmingham, AL, USA.
University of Alabama at Birmingham Center for Clinical and Translational Science, University of Alabama at Birmingham School of Medicine, Birmingham, AL, USA.

Elizabeth J Rahn (EJ)

Department of Medicine, Division of Clinical Immunology/Rheumatology, University of Alabama at Birmingham School of Medicine, Birmingham, AL, USA.

Jeanne Merchant (J)

Department of Medicine, Division of Clinical Immunology/Rheumatology, University of Alabama at Birmingham School of Medicine, Birmingham, AL, USA.
University of Alabama at Birmingham Center for Clinical and Translational Science, University of Alabama at Birmingham School of Medicine, Birmingham, AL, USA.

Colleen E Lawrence (CE)

Vanderbilt Institute for Clinical and Translational Research (VICTR), Vanderbilt University Medical Center, Nashville, TN, USA.

Leah Dunkel (L)

Vanderbilt Institute for Clinical and Translational Research (VICTR), Vanderbilt University Medical Center, Nashville, TN, USA.

Tiffany Israel (T)

Vanderbilt Institute for Clinical and Translational Research (VICTR), Vanderbilt University Medical Center, Nashville, TN, USA.

Bruce Barton (B)

Department of Population and Quantitative Health Sciences, University of Massachusetts Medical School, Worcester, MA, USA.

Fred Jenoure (F)

UMass Center for Clinical and Translational Science, University of Massachusetts Medical School, Worcester, MA, USA.

Tiffany Alexander (T)

University of Alabama at Birmingham Center for Clinical and Translational Science, University of Alabama at Birmingham School of Medicine, Birmingham, AL, USA.

Danny Cruz (D)

Vanderbilt Institute for Clinical and Translational Research (VICTR), Vanderbilt University Medical Center, Nashville, TN, USA.

Marva Douglas (M)

University of Alabama at Birmingham Center for Clinical and Translational Science, University of Alabama at Birmingham School of Medicine, Birmingham, AL, USA.

Jacqueline Sims (J)

Vanderbilt Institute for Clinical and Translational Research (VICTR), Vanderbilt University Medical Center, Nashville, TN, USA.

Al Richmond (A)

Community Campus Partnerships for Health, Raleigh, NC, USA.

Erik D Roberson (ED)

Department of Neurology, University of Alabama at Birmingham School of Medicine, Birmingham, AL, USA.

Carol Chambless (C)

Department of Neurology, University of Alabama at Birmingham School of Medicine, Birmingham, AL, USA.

Paul A Harris (PA)

Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, TN, USA.

Kenneth G Saag (KG)

Department of Medicine, Division of Clinical Immunology/Rheumatology, University of Alabama at Birmingham School of Medicine, Birmingham, AL, USA.
University of Alabama at Birmingham Center for Clinical and Translational Science, University of Alabama at Birmingham School of Medicine, Birmingham, AL, USA.

Stephenie C Lemon (SC)

UMass Center for Clinical and Translational Science, University of Massachusetts Medical School, Worcester, MA, USA.
Department of Population and Quantitative Health Sciences, University of Massachusetts Medical School, Worcester, MA, USA.

Classifications MeSH