Literature DB >> 30739901

Health Research Funding Agencies' Policies, Recommendations, and Tools for Dissemination.

Pearl A McElfish, Rachel S Purvis, M Kathryn Stewart, Laura James, Karen H Kim Yeary, Christopher R Long.   

Abstract

THE PROBLEM: Dissemination is a key component of translational research. However, research participants rarely receive findings from the studies in which they have participated. Funding agencies have a significant amount of influence to promote research dissemination through requirements, recommendations, and tools. However, it is not clear to what extent current funding agencies promote dissemination to study participants.Purpose of Article: A review of major health research funders was conducted to ascertain the current policies, recommendations, and tools related to 1) academic dissemination, 2) lay community dissemination, and 3) returning results to research participants. KEY POINTS: Several agencies have policies, recommendations, and tools for academic dissemination; however, few have the same policies, recommendations, and tools for dissemination to research participants and the lay communities they are recruited from.
CONCLUSIONS: Funding agencies have a unique opportunity to encourage the dissemination of research results to research participants and lay community audiences by developing policies to increase dissemination of grantees' research findings.

Entities:  

Mesh:

Year:  2018        PMID: 30739901      PMCID: PMC7171974          DOI: 10.1353/cpr.2018.0072

Source DB:  PubMed          Journal:  Prog Community Health Partnersh        ISSN: 1557-0541


  13 in total

Review 1.  Dissemination of results in community-based participatory research.

Authors:  Peggy G Chen; Nitza Diaz; Georgina Lucas; Marjorie S Rosenthal
Journal:  Am J Prev Med       Date:  2010-10       Impact factor: 5.043

2.  Community dissemination and genetic research: moving beyond results reporting.

Authors:  Susan Brown Trinidad; Evette J Ludman; Scarlett Hopkins; Rosalina D James; Theresa J Hoeft; Annie Kinegak; Henry Lupie; Ralph Kinegak; Bert B Boyer; Wylie Burke
Journal:  Am J Med Genet A       Date:  2015-04-21       Impact factor: 2.802

3.  Offering participants results of a clinical trial: sharing results of a negative study.

Authors:  Ann H Partridge; Julia S Wong; Katherine Knudsen; Rebecca Gelman; Ebonie Sampson; Michele Gadd; Karyn L Bishop; Jay R Harris; Eric P Winer
Journal:  Lancet       Date:  2005 Mar 12-18       Impact factor: 79.321

4.  Health research participants' preferences for receiving research results.

Authors:  Christopher R Long; M Kathryn Stewart; Thomas V Cunningham; T Scott Warmack; Pearl A McElfish
Journal:  Clin Trials       Date:  2016-08-24       Impact factor: 2.486

5.  Oncology physician and nurse practices and attitudes regarding offering clinical trial results to study participants.

Authors:  Ann H Partridge; Nadia Hackett; Emily Blood; Rebecca Gelman; Steven Joffe; Susan Bauer-Wu; Katherine Knudsen; Karen Emmons; Deborah Collyar; Richard L Schilsky; Eric P Winer
Journal:  J Natl Cancer Inst       Date:  2004-04-21       Impact factor: 13.506

6.  Providing research results to participants: attitudes and needs of adolescents and parents of children with cancer.

Authors:  Conrad Vincent Fernandez; Jun Gao; Caron Strahlendorf; Albert Moghrabi; Rebecca Davis Pentz; Raymond Carlton Barfield; Justin Nathaniel Baker; Darcy Santor; Charles Weijer; Eric Kodish
Journal:  J Clin Oncol       Date:  2009-01-21       Impact factor: 44.544

7.  Qualitative study of participants' perceptions and preferences regarding research dissemination.

Authors:  Rachel S Purvis; Traci H Abraham; Christopher R Long; M Kathryn Stewart; T Scott Warmack; Pearl Anna McElfish
Journal:  AJOB Empir Bioeth       Date:  2017-03-27

8.  Feedback of trial results to participants: a survey of clinicians' and patients' attitudes and experiences.

Authors:  Karen Cox; Nima Moghaddam; Lydia Bird; Ruth Elkan
Journal:  Eur J Oncol Nurs       Date:  2010-07-31       Impact factor: 2.398

9.  Dissemination of research findings to research participants living with HIV in rural Uganda: challenges and rewards.

Authors:  Anna Baylor; Conrad Muzoora; Mwebsa Bwana; Annet Kembabazi; Jessica E Haberer; Lynn T Matthews; Alexander C Tsai; Peter W Hunt; Jeffrey N Martin; David R Bangsberg
Journal:  PLoS Med       Date:  2013-03-05       Impact factor: 11.069

10.  Changes in Data Sharing and Data Reuse Practices and Perceptions among Scientists Worldwide.

Authors:  Carol Tenopir; Elizabeth D Dalton; Suzie Allard; Mike Frame; Ivanka Pjesivac; Ben Birch; Danielle Pollock; Kristina Dorsett
Journal:  PLoS One       Date:  2015-08-26       Impact factor: 3.240

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  7 in total

1.  Training researchers in dissemination of study results to research participants and communities.

Authors:  Jennifer Cunningham-Erves; Elizabeth Stewart; Jillian Duke; Sylvie A Akohoue; Nicole Rowen; Omaran Lee; Stephania T Miller
Journal:  Transl Behav Med       Date:  2021-07-29       Impact factor: 3.046

2.  Health researchers' experiences, perceptions and barriers related to sharing study results with participants.

Authors:  Christopher R Long; Rachel S Purvis; Elizabeth Flood-Grady; Kim S Kimminau; Robert L Rhyne; Mark R Burge; M Kathryn Stewart; Amy J Jenkins; Laura P James; Pearl A McElfish
Journal:  Health Res Policy Syst       Date:  2019-03-04

3.  Frequency and format of clinical trial results dissemination to patients: a survey of authors of trials indexed in PubMed.

Authors:  Sara Schroter; Amy Price; Mario Malički; Tessa Richards; Mike Clarke
Journal:  BMJ Open       Date:  2019-10-21       Impact factor: 2.692

4.  Study protocol for a multilevel diabetes prevention program for Marshallese Pacific Islanders in faith-based organizations.

Authors:  Pearl A McElfish; Britni Ayers; Sheldon Riklon; James P Selig; Karen Hye-Cheon Yeary; Ayoola Carleton; Ralph Wilmoth; Faith Laukon; Joel Gittelsohn; Morda Netwon; Christopher R Long
Journal:  Contemp Clin Trials Commun       Date:  2020-01-27

5.  Joint international consensus statement on crowdsourcing challenge contests in health and medicine: results of a modified Delphi process.

Authors:  Larry Han; Weiming Tang; Tiarney Ritchwood; Suzanne Day; Shufang Wei; Huanyu Bao; Randall John; Eneyi Kpokiri; Don Mathanga; Phyllis Awor; Noel Juban; Diana Castro-Arroyave; Vibhu Ambil; Yuan Xiong; Emmanuela Oppong; Joseph Tucker
Journal:  BMJ Open       Date:  2021-11-05       Impact factor: 2.692

6.  "The results are encouragements to make positive changes to be healthier:" qualitative evaluation of Marshallese participants' perceptions when receiving study results in a randomized control trial.

Authors:  Pearl A McElfish; Rachel S Purvis; Aaron J Scott; Lauren K Haggard-Duff; Sheldon Riklon; Christopher R Long
Journal:  Contemp Clin Trials Commun       Date:  2020-02-19

7.  Characterizing health researcher barriers to sharing results with study participants.

Authors:  Pearl A McElfish; Christopher R Long; Laura P James; Aaron J Scott; Elizabeth Flood-Grady; Kim S Kimminau; Robert L Rhyne; Mark R Burge; Rachel S Purvis
Journal:  J Clin Transl Sci       Date:  2019-10-04
  7 in total

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