Public Attitudes Towards Access to Health Data for Research Purposes Through Citizens' Jury in Uganda


Walker, LE ORCID: 0000-0002-3827-4387, Nakyeyune, L, Ashaba, A, Ahebwa, S, Nakijoba, R, Asiimwe, SP, Kiragga, A, Castelnuovo, B and Waitt, C ORCID: 0000-0003-0134-5855 (2024) Public Attitudes Towards Access to Health Data for Research Purposes Through Citizens' Jury in Uganda Studies in Health Technology and Informatics, 310. pp. 129-133. ISSN 0926-9630, 1879-8365

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Abstract

Citizens juries (CJ) are a method of deliberative action research that have been utilized in countries with well-funded health care systems to address questions about access to health data. Uganda is classified as a low-income country and utilizes a predominantly paper-based health record system. The burgeoning electronic health record in the central area represents an opportunity to collect and analyze longitudinal data on patients living with long term HIV infection and multiple diseases, a hitherto unexplored disease mapping exercise We set out to understand the public perception towards the use of data for research purposes such as this among Ugandans utilizing an adapted strategy sensitive to the local culture. The jury were unanimous that electronic data should be used for research provided certain safeguards are adhered to and most importantly, that consent to do so is obtained on the basis of a clear rationale for the project.

Item Type: Article
Uncontrolled Keywords: Humans, HIV Infections, Data Collection, Public Opinion, Uganda, Electronic Health Records, East African People
Depositing User: Symplectic Admin
Date Deposited: 05 Sep 2024 14:04
Last Modified: 24 Jan 2026 04:45
DOI: 10.3233/SHTI230941
Open Access URL: https://doi.org/10.3233/SHTI230941
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URI: https://livrepository.liverpool.ac.uk/id/eprint/3184282
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