Building Stronger Healthcare in Tunisia: EHR Implementation with Open Software and Local Capacity Building

Soumaya MOUGOU

Funding Area: Capacity building / Construcción de capacidad

Problem Statement: Clinical genomics has been impacted by the introduction of advanced technologies. Despite the benefits, the implementation of a clinical genomic system in Tunisia faces significant challenges, mainly consisting of (1) the scarcity of resources, funding and expertise, and (2) the limited collaborative involvement of multidisciplinary experts in medicine, genetics, computer science, bioinformatics and ethics. In addition, the management system in Tunisian public hospitals, which relies on paper documents and manual data handling, is an obstacle to progress. Although open source electronic health record solutions are available, it remains uncertain to what extent they are adapted to the unique Tunisian clinical ecosystem, including managerial, ethical and legal challenges, and how well they will be able to integrate genomic data with clinical data. To overcome these barriers, we are aiming first to implement a solution that will allow regular diagnostic and clinical management activities to be carried out, as well as knowledge discovery within the Genetics Department of Farhat Hached University Hospital. Secondly, we aim to actively involve an interdisciplinary community in the testing and implementation of this system. Such involvement aims to assess the applicability of such a system in the Tunisian healthcare landscape, taking into account compatibility with administrative procedures, compliance with ethical requirements and adherence to legal constraints in the country.

Proposed Activities: First, an infoday will be organized at the Faculty of Medicine in Sousse to gather young participants and senior experts around the project. Discussions centered around the challenges of implementing an EHR system in both a general context and the field of Medical Genomics will be initiated. Working teams will be established to focus on various aspects including technical implementation, clinical considerations, ethical and legal aspects, as well as standardization of medical vocabulary. Subsequent discussions will revolve around the specific implementation within the Tunisian medical ecosystem and Genomic Medicine context to identify the specific needs and requirements. The working teams will also determine the functionalities and features they judge to be ncessary. This will involve considering factors such as patient demographics, the types of medical services provided, workflow patterns, and data security. These discussions will be consolidated into a white paper. The project's initial 6 months will be dedicated to conducting these activities. We have identified three EHR systems—OpenMRS, OpenEMR, and GNU Health—that will undergo testing to determine their suitability for meeting the requirements discussed by the working groups. We will then create a prototype of implementation functioning on development network. The evaluation process will involve assessing the capability to integrate both clinical data and genomic data, the capacity to incorporate standardized medical vocabulary in both English and French languages, along with its alignment with ICD10 standards. These activities will take place during the first 5 months of the second semester. Afterward, we will host a hackathon that brings together multidisciplinary teams recruited from various universities, including physicians, software developers, researchers, data protection experts, geneticists, and computer scientists. The primary objective of this hackathon is to address the scalability of the application, and model the remote access to the data for researchers who will explore the data for knowledge discovery tasks. Following the hackathon, we will proceed with the final implementation of the solution and conduct a comprehensive assessment to evaluate its effectiveness and performance. The final implementation will take place during 7 months. As a mid-project initiative, we are aiming to organize a groundbreaking symposium, the first of its kind in the country, centered on medical standardized vocabulary and the use of ontology in healthcare systems. Alongside this symposium, we will host a workshop to introduce the community to different open-source solutions that can assist in standardizing data collection in the medical sector. The last 4 months will be devoted to reporting. This will involve the creation of a second white paper, which will provide an overview of the project's activities and a summary of the challenges encountered throughout the implementation process.

Openness: This project embraces openness and transparency at its core. All individuals involved will collaborate using open-source electronic health record software, fostering a spirit of accessibility and collaboration. The documentations will be made available to the public, promoting knowledge sharing and accountability. Moreover, the implementation code of controlled vocabulary and data transformation running in the backend will be openly accessible through a public repository, allowing patients and others to benefit from and contribute to the project's advancements. Our commitment to openness extends to the dissemination of knowledge. We plan to publish the white papers arising from this project publicly, ensuring that the insights gained are accessible to a broader audience, promoting further research and innovation in the field of medical data standardization. One of the objectives is to provide early career participants engaged in open-software development and medical data standardization for patients community’s and medical issues at an international level. Patient’s identity should be taken into account, by the application of the ethic rules and universal principles. This community will work to extend the implementation's applicability to other medical departments. Further events will underline the collaborative spirit and knowledge exchange. By project's journey, we seek to drive progress to shape the future of medical data management and healthcare systems.

Challenges: The project faces several challenges that need to be addressed for the successful implementation of the controlled standardized medical vocabulary. Firstly, the lack of local experts in the field necessitates support from the international community, which may introduce delays and potential coordination difficulties. While potential collaborators have been identified, their availability may not align with the project's timeline. For such reason, we are keen to organise the symposium on medical standardized vocabulary. One of the most significant hurdles lies in assessing the needs of Tunisian users for the Electronic Health Record system. There appears to be an underappreciation of the benefits of digitalization among medical staff, which requires dedicated efforts to raise awareness and ensure their active participation. The project will not be conducting activities that focus mainly on raising awareness among the medical staff about this issue. Furthermore, maintaining effective communication among the multidisciplinary teams involved in the project presents a considerable challenge. Coordinating the efforts of various collaborators demands using effective tools and practices of communication, requiring a review of past experiences to improve coordination strategies.

Neglectedness: We will receive in-kind support from the Faculty of Medicine of Sousse and the Farhat Hached University Hospital, granting us access to their network and facilities. The project has not sought additional funding from other sources.

Success: In relation to the application of ERH in Genomic medicine the sucess is defined by reaching out to the following objectives: Implement the Electronic Health Record (EHR) system on the local network of the Farhat Hached hospital for seamless data management and accessibility. Develop a user-friendly application that allows interaction in both French and English languages, ensuring ease of use for diverse users. Enable easy retrieval of data related to genes, mutations, diseases, and phenotypic information while complying with ethical and legal standards to ensure data privacy and security. Facilitate remote access for researchers, promoting collaboration and knowledge sharing in biomedical research. In relation to building a community of clinical data science Secure the participation of at least one senior expert from relevant fields, including computer science, law, medicine, and biomedical research, to e sure comprehensive system development and adherence to quality standards. Form a core team of at least 15 young students or early career researchers, fostering a vibrant community of clinical data scientists for continuous innovation and growth. Establishing a collaborative team within the Faculty of Medicine in Sousse dedicated to standardizing clinical data across the regional healthcare facilities.

Total Budget: 23,700 USD

Affiliations: Department of Genetics, Farhat Hached University Hospital of Sousse, Tunisia.

LMIE Carveout: Tunisia, a low and middle income country, faces the impact of recent political events and socio-economic challenges, posing difficulties in advancing its healthcare system towards inclusiveness, precision, and digitalization. Embracing open infrastructure proves highly advantageous due to its cost-effectiveness and flexibility, enabling tailored adjustments to accommodate Tunisia's unique healthcare system. Furthermore, the project will provide a valuable opportunity for many participants with expertise in Information Technology to gain insights into the medical sector and discover ways they can contribute. Many of these individuals have not had previous exposure to such activities.

Team Skills: Our department is at the forefront of genomic medicine activities in Tunisia, making us well-positioned to lead the proposed project successfully. With a diverse team of experts in medicine, molecular biology, ethics, and bioinformatics, we have a comprehensive skill set that will be instrumental in achieving project goals. Our collective knowledge and lived experiences will provide invaluable insights into the intricate aspects of precision medicine implementation. Furthermore, our extended experience in genomic analysis will play a pivotal role in coordinating discussions on the various challenges faced in the implementation of EHR in Tunisian public hospitals. Collaborations with the Department of Medical Informatics and the Faculty of Medicine of Sousse further strengthen our capacity. These partnerships offer us access to technical assistance and resources that will bolster the project's overall effectiveness. Additionally, our location within a research hub that covers both the University of Sousse and the University of Monastir provides access to a pool of talented graduate students in STEM and computer science. These aspiring individuals seek new opportunities to make a significant impact, aligning perfectly with the objectives of our project.

Submission Number: 156