Participant-centric initiatives

Tools to facilitate engagement in research

Nicholas Anderson, Caleb Bragg, Andrea Hartzler, Kelly Edwards

Research output: Contribution to journalArticle

15 Citations (Scopus)

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 languageEnglish (US)
Pages (from-to)25-29
Number of pages5
JournalApplied and Translational Genomics
Volume1
DOIs
StatePublished - Dec 1 2012
Externally publishedYes

Fingerprint

Research
Informatics
Privacy
Longitudinal Studies

Keywords

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

ASJC Scopus subject areas

  • Biotechnology
  • Molecular Biology
  • Pharmaceutical Science

Cite this

Participant-centric initiatives : Tools to facilitate engagement in research. / Anderson, Nicholas; Bragg, Caleb; Hartzler, Andrea; Edwards, Kelly.

In: Applied and Translational Genomics, Vol. 1, 01.12.2012, p. 25-29.

Research output: Contribution to journalArticle

Anderson, Nicholas ; Bragg, Caleb ; Hartzler, Andrea ; Edwards, Kelly. / Participant-centric initiatives : Tools to facilitate engagement in research. In: Applied and Translational Genomics. 2012 ; Vol. 1. pp. 25-29.
@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 = "12",
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

VL - 1

SP - 25

EP - 29

JO - Applied and Translational Genomics

JF - Applied and Translational Genomics

SN - 2212-0661

ER -