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      Characterizing health researcher barriers to sharing results with study participants

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          Abstract

          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.

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          Most cited references24

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          Designing for dissemination among public health researchers: findings from a national survey in the United States.

          We have described the practice of designing for dissemination among researchers in the United States with the intent of identifying gaps and areas for improvement.
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            Communicating the Results of Clinical Research to Participants: Attitudes, Practices, and Future Directions

            The authors discuss the available data on the effects of communicating aggregate and individual research results on participants, investigators, and the research enterprise.
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              • Record: found
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              • Article: not found

              Revisiting the Quantitative-Qualitative Debate: Implications for Mixed-Methods Research.

              Health care research includes many studies that combine quantitative and qualitative methods. In this paper, we revisit the quantitative-qualitative debate and review the arguments for and against using mixed-methods. In addition, we discuss the implications stemming from our view, that the paradigms upon which the methods are based have a different view of reality and therefore a different view of the phenomenon under study. Because the two paradigms do not study the same phenomena, quantitative and qualitative methods cannot be combined for cross-validation or triangulation purposes. However, they can be combined for complementary purposes. Future standards for mixed-methods research should clearly reflect this recommendation.
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                Author and article information

                Journal
                J Clin Transl Sci
                J Clin Transl Sci
                CTS
                Journal of Clinical and Translational Science
                Cambridge University Press (Cambridge, UK )
                2059-8661
                December 2019
                04 October 2019
                : 3
                : 6
                : 295-301
                Affiliations
                [1 ]Internal Medicine, College of Medicine, University of Arkansas for Medical Sciences Northwest , Fayetteville, AR 72703, USA
                [2 ]Department of Pediatrics, University of Arkansas for Medical Sciences , Little Rock, AR 72205, USA
                [3 ]Office of Community Health and Research, University of Arkansas for Medical Sciences Northwest , Fayetteville, AR 72703, USA
                [4 ]STEM Translational Communication Center, College of Journalism and Communications and Recruitment Center, Clinical Translational Science Institute, University of Florida , Gainesville, FL 32611, USA
                [5 ]Department of Family Medicine and Community Health, University of Kansas Medical Center , Kansas City, KS 66160, USA
                [6 ]Department of Family and Community Medicine, School of Medicine, University of New Mexico , Albuquerque, NM 87131, USA
                [7 ]Clinical and Translational Science Center, Health Science Center, University of New Mexico , Albuquerque, NM 87131, USA
                Author notes
                Address for correspondence: P. A. McElfish, PhD, University of Arkansas for Medical Sciences Northwest, 1125 N. College Ave, Fayetteville, AR 72703, USA. Email: pamcelfish@ 123456uams.edu
                Author information
                https://orcid.org/0000-0002-4033-6241
                https://orcid.org/0000-0002-3015-3660
                Article
                00409 S2059866119004096
                10.1017/cts.2019.409
                6886004
                31827902
                69d9a123-1d14-49c2-a630-ea3edd6c1fa9
                © The Association for Clinical and Translational Science 2019

                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.

                History
                : 04 June 2019
                : 12 August 2019
                : 26 August 2019
                Page count
                Tables: 3, References: 43, Pages: 7
                Categories
                Research Article
                Basic and Preclinical Research

                dissemination,results sharing,research communication,engagement,barriers

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