Walker, Lauren E 
ORCID: 0000-0002-3827-4387, Nakyeyune, Lydia, Ashaba, Andrew, Ahebwa, Simple, Nakijoba, Ritah, Asiimwe, Simon P, Kiragga, Agnes, Castelnuovo, Barbara and Waitt, Catriona ORCID: 0000-0003-0134-5855
(2024)
Public Attitudes Towards Access to Health Data for Research Purposes Through Citizens' Jury in Uganda
MEDINFO 2023 - THE FUTURE IS ACCESSIBLE, 310.
pp. 129-133.
ISSN 0926-9630, 1879-8365
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: | Citizens jury, ethical data access, electronic health record |
| Depositing User: | Symplectic Admin |
| Date Deposited: | 05 Sep 2024 14:04 |
| Last Modified: | 22 May 2026 16:07 |
| DOI: | 10.3233/SHTI230941 |
| Open Access URL: | https://doi.org/10.3233/SHTI230941 |
| Related Websites: | |
| URI: | https://livrepository.liverpool.ac.uk/id/eprint/3184282 |
| Disclaimer: | The University of Liverpool is not responsible for content contained on other websites from links within repository metadata. Please contact us if you notice anything that appears incorrect or inappropriate. |
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