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Health researchers’ experiences, perceptions and barriers related to sharing study results with participants
BACKGROUND: Although research participants are generally interested in receiving results from studies in which they participate, health researchers rarely communicate study findings to participants. The present study was designed to provide opportunity for a broad group of health researchers to desc...
Autores principales: | , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2019
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6399828/ https://www.ncbi.nlm.nih.gov/pubmed/30832733 http://dx.doi.org/10.1186/s12961-019-0422-5 |
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author | Long, Christopher R. Purvis, Rachel S. Flood-Grady, Elizabeth Kimminau, Kim S. Rhyne, Robert L. Burge, Mark R. Stewart, M. Kathryn Jenkins, Amy J. James, Laura P. McElfish, Pearl A. |
author_facet | Long, Christopher R. Purvis, Rachel S. Flood-Grady, Elizabeth Kimminau, Kim S. Rhyne, Robert L. Burge, Mark R. Stewart, M. Kathryn Jenkins, Amy J. James, Laura P. McElfish, Pearl A. |
author_sort | Long, Christopher R. |
collection | PubMed |
description | BACKGROUND: Although research participants are generally interested in receiving results from studies in which they participate, health researchers rarely communicate study findings to participants. The present study was designed to provide opportunity for a broad group of health researchers to describe their experiences and concerns related to sharing results (i.e. aggregate study findings) with research participants. METHODS: We used a mixed–methods concurrent triangulation design, relying on an online survey to capture health researchers’ experiences, perceptions and barriers related to sharing study results with participants. Respondents were health researchers who conduct research that includes the consent of human subjects and hold a current appointment at an accredited academic medical institution within the United States. For quantitative data, the analytic strategy focused on item-level descriptive analyses. For the qualitative data, analyses focused on a priori themes and emergent subthemes. RESULTS: Respondents were 414 researchers from 44 academic medical institutions; 64.5% reported that results should always be shared with participants, yet 60.8% of respondents could identify studies in which they had a leadership role where results were not shared. Emergent subthemes from researchers’ reasons why results should be shared included participant ownership of findings and benefits of results sharing to science. Reasons for not sharing included concerns related to participants’ health literacy and participants’ lack of desire for results. Across all respondents who described barriers to results sharing, the majority described logistical barriers. CONCLUSIONS: Study findings contribute to the literature by documenting researchers’ perspectives and experiences about sharing results with research participants, which can inform efforts to improve results sharing. Most respondents indicated that health research results should always be shared with participants, although the extent to which many respondents described barriers to results sharing as well as reported reasons not to share results suggests difficulties with a one-size-fits-all approach to improving results sharing. |
format | Online Article Text |
id | pubmed-6399828 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2019 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-63998282019-03-13 Health researchers’ experiences, perceptions and barriers related to sharing study results with participants Long, Christopher R. Purvis, Rachel S. Flood-Grady, Elizabeth Kimminau, Kim S. Rhyne, Robert L. Burge, Mark R. Stewart, M. Kathryn Jenkins, Amy J. James, Laura P. McElfish, Pearl A. Health Res Policy Syst Research BACKGROUND: Although research participants are generally interested in receiving results from studies in which they participate, health researchers rarely communicate study findings to participants. The present study was designed to provide opportunity for a broad group of health researchers to describe their experiences and concerns related to sharing results (i.e. aggregate study findings) with research participants. METHODS: We used a mixed–methods concurrent triangulation design, relying on an online survey to capture health researchers’ experiences, perceptions and barriers related to sharing study results with participants. Respondents were health researchers who conduct research that includes the consent of human subjects and hold a current appointment at an accredited academic medical institution within the United States. For quantitative data, the analytic strategy focused on item-level descriptive analyses. For the qualitative data, analyses focused on a priori themes and emergent subthemes. RESULTS: Respondents were 414 researchers from 44 academic medical institutions; 64.5% reported that results should always be shared with participants, yet 60.8% of respondents could identify studies in which they had a leadership role where results were not shared. Emergent subthemes from researchers’ reasons why results should be shared included participant ownership of findings and benefits of results sharing to science. Reasons for not sharing included concerns related to participants’ health literacy and participants’ lack of desire for results. Across all respondents who described barriers to results sharing, the majority described logistical barriers. CONCLUSIONS: Study findings contribute to the literature by documenting researchers’ perspectives and experiences about sharing results with research participants, which can inform efforts to improve results sharing. Most respondents indicated that health research results should always be shared with participants, although the extent to which many respondents described barriers to results sharing as well as reported reasons not to share results suggests difficulties with a one-size-fits-all approach to improving results sharing. BioMed Central 2019-03-04 /pmc/articles/PMC6399828/ /pubmed/30832733 http://dx.doi.org/10.1186/s12961-019-0422-5 Text en © The Author(s). 2019 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. |
spellingShingle | Research Long, Christopher R. Purvis, Rachel S. Flood-Grady, Elizabeth Kimminau, Kim S. Rhyne, Robert L. Burge, Mark R. Stewart, M. Kathryn Jenkins, Amy J. James, Laura P. McElfish, Pearl A. Health researchers’ experiences, perceptions and barriers related to sharing study results with participants |
title | Health researchers’ experiences, perceptions and barriers related to sharing study results with participants |
title_full | Health researchers’ experiences, perceptions and barriers related to sharing study results with participants |
title_fullStr | Health researchers’ experiences, perceptions and barriers related to sharing study results with participants |
title_full_unstemmed | Health researchers’ experiences, perceptions and barriers related to sharing study results with participants |
title_short | Health researchers’ experiences, perceptions and barriers related to sharing study results with participants |
title_sort | health researchers’ experiences, perceptions and barriers related to sharing study results with participants |
topic | Research |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6399828/ https://www.ncbi.nlm.nih.gov/pubmed/30832733 http://dx.doi.org/10.1186/s12961-019-0422-5 |
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