Literature DB >> 32269461

Toward Reducing Health Information Inequities in the Caribbean: Our Experience Building a Participatory Health Informatics Project.

Karen Wang1,2, Ian Hambleton3, Erika Linnander4, Luis Marenco2, Saria Hassan1, Mahima Kumara1, Lyna E Fredericks5, Saida Harrigan6, Trevor A Hasse7, Cynthia Brandt2, Marcella Nunez-Smith1.   

Abstract

Precision medicine seeks to leverage technology to improve the health for all individuals. Successful health information systems rely fundamentally on the integration and sharing of data from a range of disparate sources. In many settings, basic infrastructure inequities exist that limit the usefulness of health information systems. We discuss the work of the Yale Transdisciplinary Collaborative Center for Health Disparities focused on Precision Medicine, which aims to improve the health of people in the Caribbean and Caribbean diaspora by leveraging precision medicine approaches. We describe a participatory informatics approach to sharing data as a potential mechanism to reducing inequities in the existing data infrastructure.
Copyright © 2020, Ethnicity & Disease, Inc.

Entities:  

Keywords:  Caribbean; Community-Engaged Health Informatics; Data Sharing; Precision Medicine

Mesh:

Year:  2020        PMID: 32269461      PMCID: PMC7138447          DOI: 10.18865/ed.30.S1.193

Source DB:  PubMed          Journal:  Ethn Dis        ISSN: 1049-510X            Impact factor:   1.847


  34 in total

Review 1.  North-South research partnerships: the ethics of carrying out research in developing countries.

Authors:  T T Edejer
Journal:  BMJ       Date:  1999-08-14

2.  What makes clinical research ethical?

Authors:  E J Emanuel; D Wendler; C Grady
Journal:  JAMA       Date:  2000 May 24-31       Impact factor: 56.272

3.  Science and government. An international framework to promote access to data.

Authors:  Peter Arzberger; Peter Schroeder; Anne Beaulieu; Geof Bowker; Kathleen Casey; Leif Laaksonen; David Moorman; Paul Uhlir; Paul Wouters
Journal:  Science       Date:  2004-03-19       Impact factor: 47.728

4.  Sometimes more is more: iterative participatory design of infographics for engagement of community members with varying levels of health literacy.

Authors:  Adriana Arcia; Niurka Suero-Tejeda; Michael E Bales; Jacqueline A Merrill; Sunmoo Yoon; Janet Woollen; Suzanne Bakken
Journal:  J Am Med Inform Assoc       Date:  2015-07-13       Impact factor: 4.497

5.  Non-communicable chronic diseases and timely breast cancer screening among women of the Eastern Caribbean Health Outcomes Research Network (ECHORN) Cohort Study.

Authors:  K H Wang; T A Thompson; D Galusha; H Friedman; C M Nazario; M Nunez; R G Maharaj; O P Adams; M Nunez-Smith
Journal:  Cancer Causes Control       Date:  2018-02-08       Impact factor: 2.506

Review 6.  Data Sharing For Precision Medicine: Policy Lessons And Future Directions.

Authors:  Alessandro Blasimme; Marta Fadda; Manuel Schneider; Effy Vayena
Journal:  Health Aff (Millwood)       Date:  2018-05       Impact factor: 6.301

7.  Challenges in Identifying Refugees in National Health Data Sets.

Authors:  Wagahta Semere; Katherine Yun; Cyrus Ahalt; Brie Williams; Emily A Wang
Journal:  Am J Public Health       Date:  2016-05-19       Impact factor: 9.308

8.  Central challenges facing the national clinical research enterprise.

Authors:  Nancy S Sung; William F Crowley; Myron Genel; Patricia Salber; Lewis Sandy; Louis M Sherwood; Stephen B Johnson; Veronica Catanese; Hugh Tilson; Kenneth Getz; Elaine L Larson; David Scheinberg; E Albert Reece; Harold Slavkin; Adrian Dobs; Jack Grebb; Rick A Martinez; Allan Korn; David Rimoin
Journal:  JAMA       Date:  2003-03-12       Impact factor: 56.272

9.  A Solutions-Based Approach to Building Data-Sharing Partnerships.

Authors:  Sarah E Wiehe; Marc B Rosenman; David Chartash; Elaine R Lipscomb; Tammie L Nelson; Lauren A Magee; J Dennis Fortenberry; Matthew C Aalsma
Journal:  EGEMS (Wash DC)       Date:  2018-08-22

10.  A design framework and exemplar metrics for FAIRness.

Authors:  Mark D Wilkinson; Susanna-Assunta Sansone; Erik Schultes; Peter Doorn; Luiz Olavo Bonino da Silva Santos; Michel Dumontier
Journal:  Sci Data       Date:  2018-06-26       Impact factor: 6.444

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