Participant-centric initiatives: Tools to facilitate engagement in research

Nicholas Anderson; Caleb Bragg; Andrea Hartzler; Kelly Edwards

doi:10.1016/j.atg.2012.07.001

Participant-centric initiatives: Tools to facilitate engagement in research

Nicholas Anderson, Caleb Bragg, Andrea Hartzler, Kelly Edwards

Research output: Contribution to journal › Article › peer-review

24 Scopus citations

Abstract

Clinical genomic research faces increasing challenges in establishing participant privacy and consent processes that facilitate meaningful choice and communication capacity for longitudinal and secondary research uses. There are an evolving range of participant-centric initiatives that combine web-based informatics tools with new models of engagement and research collaboration. These emerging initiatives may become valuable approaches to support large-scale and longitudinal research studies. We highlight and discuss four types of emerging initiatives for engaging and sustaining participation in research.

Original language	English (US)
Pages (from-to)	25-29
Number of pages	5
Journal	Applied and Translational Genomics
Volume	1
DOIs	https://doi.org/10.1016/j.atg.2012.07.001
State	Published - Dec 1 2012
Externally published	Yes

Keywords

Applied research
Ethical and social issues
Participant engagement
Research communication
Software tools

ASJC Scopus subject areas

Biotechnology
Molecular Biology
Pharmaceutical Science

Access to Document

10.1016/j.atg.2012.07.001

Cite this

@article{740b12d2b258458891844d5adde42e2a,

title = "Participant-centric initiatives: Tools to facilitate engagement in research",

abstract = "Clinical genomic research faces increasing challenges in establishing participant privacy and consent processes that facilitate meaningful choice and communication capacity for longitudinal and secondary research uses. There are an evolving range of participant-centric initiatives that combine web-based informatics tools with new models of engagement and research collaboration. These emerging initiatives may become valuable approaches to support large-scale and longitudinal research studies. We highlight and discuss four types of emerging initiatives for engaging and sustaining participation in research.",

keywords = "Applied research, Ethical and social issues, Participant engagement, Research communication, Software tools",

author = "Nicholas Anderson and Caleb Bragg and Andrea Hartzler and Kelly Edwards",

year = "2012",

month = dec,

day = "1",

doi = "10.1016/j.atg.2012.07.001",

language = "English (US)",

volume = "1",

pages = "25--29",

journal = "Applied and Translational Genomics",

issn = "2212-0661",

publisher = "Elsevier BV",

}

TY - JOUR

T1 - Participant-centric initiatives

T2 - Tools to facilitate engagement in research

AU - Anderson, Nicholas

AU - Bragg, Caleb

AU - Hartzler, Andrea

AU - Edwards, Kelly

PY - 2012/12/1

Y1 - 2012/12/1

N2 - Clinical genomic research faces increasing challenges in establishing participant privacy and consent processes that facilitate meaningful choice and communication capacity for longitudinal and secondary research uses. There are an evolving range of participant-centric initiatives that combine web-based informatics tools with new models of engagement and research collaboration. These emerging initiatives may become valuable approaches to support large-scale and longitudinal research studies. We highlight and discuss four types of emerging initiatives for engaging and sustaining participation in research.

AB - Clinical genomic research faces increasing challenges in establishing participant privacy and consent processes that facilitate meaningful choice and communication capacity for longitudinal and secondary research uses. There are an evolving range of participant-centric initiatives that combine web-based informatics tools with new models of engagement and research collaboration. These emerging initiatives may become valuable approaches to support large-scale and longitudinal research studies. We highlight and discuss four types of emerging initiatives for engaging and sustaining participation in research.

KW - Applied research

KW - Ethical and social issues

KW - Participant engagement

KW - Research communication

KW - Software tools

UR - http://www.scopus.com/inward/record.url?scp=84870059904&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84870059904&partnerID=8YFLogxK

U2 - 10.1016/j.atg.2012.07.001

DO - 10.1016/j.atg.2012.07.001

M3 - Article

AN - SCOPUS:84870059904

VL - 1

SP - 25

EP - 29

JO - Applied and Translational Genomics

JF - Applied and Translational Genomics

SN - 2212-0661

ER -

Participant-centric initiatives: Tools to facilitate engagement in research

Abstract

Keywords

ASJC Scopus subject areas

Access to Document

Other files and links

Fingerprint

Cite this