Sankofa pediatric HIV disclosure intervention cyber data management: Building capacity in a resource-limited setting and ensuring data quality

Ann Christine Catlin, Sumudinie Fernando, Ruwan Gamage, Lorna Renner, Sampson Antwi, Jonas Kusah Tettey, Kofi Aikins Amisah, Tassos Kyriakides, Xiangyu Cong, Nancy Reynolds, Elijah Paintsil

Research output: Contribution to journalArticle

Abstract

Prevalence of pediatric HIV disclosure is low in resource-limited settings. Innovative, culturally sensitive, and patient-centered disclosure approaches are needed. Conducting such studies in resource-limited settings is not trivial considering the challenges of capturing, cleaning, and storing clinical research data. To overcome some of these challenges, the Sankofa pediatric disclosure intervention adopted an interactive cyber infrastructure for data capture and analysis. The Sankofa Project database system is built on the HUBzero cyber infrastructure (https://hubzero.org), an open source software platform. The hub database components support: (1) data management-the "databases" component creates, configures, and manages database access, backup, repositories, applications, and access control; (2) data collection-the "forms" component is used to build customized web case report forms that incorporate common data elements and include tailored form submit processing to handle error checking, data validation, and data linkage as the data are stored to the database; and (3) data exploration-the "dataviewer" component provides powerful methods for users to view, search, sort, navigate, explore, map, graph, visualize, aggregate, drill-down, compute, and export data from the database. The Sankofa cyber data management tool supports a user-friendly, secure, and systematic collection of all data. We have screened more than 400 child-caregiver dyads and enrolled nearly 300 dyads, with tens of thousands of data elements. The dataviews have successfully supported all data exploration and analysis needs of the Sankofa Project. Moreover, the ability of the sites to query and view data summaries has proven to be an incentive for collecting complete and accurate data. The data system has all the desirable attributes of an electronic data capture tool. It also provides an added advantage of building data management capacity in resource-limited settings due to its innovative data query and summary views and availability of real-time support by the data management team.

Original languageEnglish (US)
Pages (from-to)99-107
Number of pages9
JournalAIDS Care - Psychological and Socio-Medical Aspects of AIDS/HIV
Volume27
DOIs
StatePublished - Nov 2 2015
Externally publishedYes

Fingerprint

Capacity Building
data quality
Disclosure
HIV
Databases
Pediatrics
management
resources
Mandrillus
Aptitude
Information Storage and Retrieval
Information Systems
Caregivers
data capture
Data Accuracy
Motivation
Software
dyad
Research
infrastructure

Keywords

  • cyber infrastructure
  • dataviews
  • electronic data capture
  • HIV disclosure
  • resource-limited setting

ASJC Scopus subject areas

  • Health(social science)
  • Social Psychology
  • Public Health, Environmental and Occupational Health

Cite this

Sankofa pediatric HIV disclosure intervention cyber data management : Building capacity in a resource-limited setting and ensuring data quality. / Catlin, Ann Christine; Fernando, Sumudinie; Gamage, Ruwan; Renner, Lorna; Antwi, Sampson; Tettey, Jonas Kusah; Amisah, Kofi Aikins; Kyriakides, Tassos; Cong, Xiangyu; Reynolds, Nancy; Paintsil, Elijah.

In: AIDS Care - Psychological and Socio-Medical Aspects of AIDS/HIV, Vol. 27, 02.11.2015, p. 99-107.

Research output: Contribution to journalArticle

Catlin, Ann Christine ; Fernando, Sumudinie ; Gamage, Ruwan ; Renner, Lorna ; Antwi, Sampson ; Tettey, Jonas Kusah ; Amisah, Kofi Aikins ; Kyriakides, Tassos ; Cong, Xiangyu ; Reynolds, Nancy ; Paintsil, Elijah. / Sankofa pediatric HIV disclosure intervention cyber data management : Building capacity in a resource-limited setting and ensuring data quality. In: AIDS Care - Psychological and Socio-Medical Aspects of AIDS/HIV. 2015 ; Vol. 27. pp. 99-107.
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