Cargando…

Characterizing health researcher barriers to sharing results with study participants

INTRODUCTION: Research participants want to receive results from studies in which they participate. However, health researchers rarely share the results of their studies beyond scientific publication. Little is known about the barriers researchers face in returning study results to participants. MET...

Descripción completa

Detalles Bibliográficos
Autores principales: McElfish, Pearl A., Long, Christopher R., James, Laura P., Scott, Aaron J., Flood-Grady, Elizabeth, Kimminau, Kim S., Rhyne, Robert L., Burge, Mark R., Purvis, Rachel S.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Cambridge University Press 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6886004/
https://www.ncbi.nlm.nih.gov/pubmed/31827902
http://dx.doi.org/10.1017/cts.2019.409
_version_ 1783474817562836992
author McElfish, Pearl A.
Long, Christopher R.
James, Laura P.
Scott, Aaron J.
Flood-Grady, Elizabeth
Kimminau, Kim S.
Rhyne, Robert L.
Burge, Mark R.
Purvis, Rachel S.
author_facet McElfish, Pearl A.
Long, Christopher R.
James, Laura P.
Scott, Aaron J.
Flood-Grady, Elizabeth
Kimminau, Kim S.
Rhyne, Robert L.
Burge, Mark R.
Purvis, Rachel S.
author_sort McElfish, Pearl A.
collection PubMed
description INTRODUCTION: Research participants want to receive results from studies in which they participate. However, health researchers rarely share the results of their studies beyond scientific publication. Little is known about the barriers researchers face in returning study results to participants. METHODS: Using a mixed-methods design, health researchers (N = 414) from more than 40 US universities were asked about barriers to providing results to participants. Respondents were recruited from universities with Clinical and Translational Science Award programs and Prevention Research Centers. RESULTS: Respondents reported the percent of their research where they experienced each of the four barriers to disseminating results to participants: logistical/methodological, financial, systems, and regulatory. A fifth barrier, investigator capacity, emerged from data analysis. Training for research faculty and staff, promotion and tenure incentives, and funding agencies supporting dissemination of results to participants were solutions offered to overcoming barriers. CONCLUSIONS: Study findings add to literature on research dissemination by documenting health researchers’ perceived barriers to sharing study results with participants. Implications for policy and practice suggest that additional resources and training could help reduce dissemination barriers and increase the return of results to participants.
format Online
Article
Text
id pubmed-6886004
institution National Center for Biotechnology Information
language English
publishDate 2019
publisher Cambridge University Press
record_format MEDLINE/PubMed
spelling pubmed-68860042019-12-11 Characterizing health researcher barriers to sharing results with study participants McElfish, Pearl A. Long, Christopher R. James, Laura P. Scott, Aaron J. Flood-Grady, Elizabeth Kimminau, Kim S. Rhyne, Robert L. Burge, Mark R. Purvis, Rachel S. J Clin Transl Sci Research Article INTRODUCTION: Research participants want to receive results from studies in which they participate. However, health researchers rarely share the results of their studies beyond scientific publication. Little is known about the barriers researchers face in returning study results to participants. METHODS: Using a mixed-methods design, health researchers (N = 414) from more than 40 US universities were asked about barriers to providing results to participants. Respondents were recruited from universities with Clinical and Translational Science Award programs and Prevention Research Centers. RESULTS: Respondents reported the percent of their research where they experienced each of the four barriers to disseminating results to participants: logistical/methodological, financial, systems, and regulatory. A fifth barrier, investigator capacity, emerged from data analysis. Training for research faculty and staff, promotion and tenure incentives, and funding agencies supporting dissemination of results to participants were solutions offered to overcoming barriers. CONCLUSIONS: Study findings add to literature on research dissemination by documenting health researchers’ perceived barriers to sharing study results with participants. Implications for policy and practice suggest that additional resources and training could help reduce dissemination barriers and increase the return of results to participants. Cambridge University Press 2019-10-04 /pmc/articles/PMC6886004/ /pubmed/31827902 http://dx.doi.org/10.1017/cts.2019.409 Text en © The Association for Clinical and Translational Science 2019 https://creativecommons.org/licenses/by/4.0/ This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Research Article
McElfish, Pearl A.
Long, Christopher R.
James, Laura P.
Scott, Aaron J.
Flood-Grady, Elizabeth
Kimminau, Kim S.
Rhyne, Robert L.
Burge, Mark R.
Purvis, Rachel S.
Characterizing health researcher barriers to sharing results with study participants
title Characterizing health researcher barriers to sharing results with study participants
title_full Characterizing health researcher barriers to sharing results with study participants
title_fullStr Characterizing health researcher barriers to sharing results with study participants
title_full_unstemmed Characterizing health researcher barriers to sharing results with study participants
title_short Characterizing health researcher barriers to sharing results with study participants
title_sort characterizing health researcher barriers to sharing results with study participants
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6886004/
https://www.ncbi.nlm.nih.gov/pubmed/31827902
http://dx.doi.org/10.1017/cts.2019.409
work_keys_str_mv AT mcelfishpearla characterizinghealthresearcherbarrierstosharingresultswithstudyparticipants
AT longchristopherr characterizinghealthresearcherbarrierstosharingresultswithstudyparticipants
AT jameslaurap characterizinghealthresearcherbarrierstosharingresultswithstudyparticipants
AT scottaaronj characterizinghealthresearcherbarrierstosharingresultswithstudyparticipants
AT floodgradyelizabeth characterizinghealthresearcherbarrierstosharingresultswithstudyparticipants
AT kimminaukims characterizinghealthresearcherbarrierstosharingresultswithstudyparticipants
AT rhynerobertl characterizinghealthresearcherbarrierstosharingresultswithstudyparticipants
AT burgemarkr characterizinghealthresearcherbarrierstosharingresultswithstudyparticipants
AT purvisrachels characterizinghealthresearcherbarrierstosharingresultswithstudyparticipants