Developing standardized sharing of clinical data as a method to assess the longitudinal retention of HIV treatment.

Backed by RabatKongen
Metairie, Louisiana
BiologyData Science
Raised of $6,080 Goal
Ended on 2/15/24
Campaign Ended
  • $10
  • 1%
  • Finished
    on 2/15/24

About This Project

Using HIPAA-compliant Electronic Medical Record (EMR) systems in Uganda, we will track HIV therapy retention and assess the outcomes of pre-exposure HIV prophylaxis. This will be a capacity building approach based on the Patient Centered Outcomes Research Network (PCORnet) Common Data Model as vehicle to share standardized data from an existing EMR system and patient portal. The lessons learned from this pilot will be extended to other relevant disease models and medical centers.

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What is the context of this research?

In Uganda, there exists a significant amount of raw health information that could be useful to aid local health officials to track and adequately plan for long term health interventions. We intend to develop a capacity building approach based on the Patient Centered Outcomes Research Network (PCORnet) Common Data Model as vehicle to standardize data from existing electronic medical record systems and patient portals to models that can be used for research and epidemiological functions.

What is the significance of this project?

Demonstrating that standardizing exisitng clinical data into a research-friendly model can enable the rapid evaluation of retention of HIV treatment on viral loads as well as the outcomes of HIV prophylaxis on a cohort of patients will support the development of a framework to manage other communicable or non-communicable diseases. In addition, the development of a standardized approach to sharing and analyzing clinical data will enable health planners in Uganda to better manage and plan for the provision of care and services to the population.

What are the goals of the project?

The goals are: 1. To recruit pilot clinics/health systems that ideally have existing Electronic Medical Record (EMR) system in strategic geographical regions of Uganda to participate in the study. 2. To implement the Patient Centered Outcomes Research Network (PCORnet) Common Data Model as vehicle to standardize data from existing EMR systems into usable research data. 3. To test the developed systems for capacity for longitudinal assessment of retention of HIV treatment or the outcomes of HIV prophylaxis. 4. To learn from the endeavor and build a handbook that describes reproducible systems and processes that can be applied elsewhere across the East African region and other sub Saharan countries.


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Laptops will be used to collect clinical data and act as a bridge to cloud storage and sharing of data with the research team.

Stipends to clinics will support the hiring of personnel to collect the patient data.

A data scientist will install software and manage the daily data collection operations.

Connectivity and web services will enable reseachers in remote locations from the clinic sites to access data delivered from the clinic to cloud services.

A data architect will translate the electronic medical record data into an abbreviated "mini" version of the Patient Centered Outcomes Research network (PCORnet) Common Data Model - this is a model used by PCORnet to standardize and share data with research teams.

The virologist will analyze the outcomes of longitudinal retention of HIV treatment and pre-exposure prophylaxis.

The travel stipend will support the data scientist movement between clinics to manage data collection.

Endorsed by

I am really excited about this project, because it will help demonstrate that Uganda can successfully manage epidemics. This has not been possible because data management has not been at the standard at which it can be independently vetted. The researcher is uniquely qualified because of his experience in undertaking scientific research gained while pursuing his doctorate and subsequently as an academic. In addition, his more recent experience in the field of health informatics, as well as, being a Ugandan, are also an advantage .

Project Timeline

I expect that after securing all the necessary funds, it will take approximately 1 to 1.5 years to complete onboarding clinics and other health systems, identifying and hiring a data scientist plus installation of the software and beginning collection of data to be used in assessment of disease emergence and prevalence.

Jan 01, 2024

Project Launched

Feb 15, 2024

Begin review of the Uganda Data Privacy Protection Act to align with governance structures

Feb 15, 2024

Complete securing of funding for the pilot project

Mar 01, 2024

Begin search for data scientist and architect

Mar 31, 2024

Complete search for data scientist and architect

Meet the Team

Sylvester Tumusiime
Sylvester Tumusiime

Sylvester Tumusiime

As an informatics manager, my job involves supporting the standardization of health systems data from different electronic health record systems into a common data model that is utilized by researchers across different research institutes in the United States of America. I act as the interface between partners at different health systems - this includes working with stakeholders to prioritize data improvement efforts, organizing team efforts to complete prioritized tasks, and managing the efforts of network systems administrators to ensure uninterrupted flow of data in a manner that guarantees confidentiality, integrity and availability of the data thereby offering patient privacy in accordance with HIPAA regulations. I also participate in a limited capacity as a data analyst - reviewing data for conformance with underlying plausibility and continuity requirements as defined by the common data specifications.

Project Backers

  • 1Backers
  • 1%Funded
  • $10Total Donations
  • $10.00Average Donation
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