Meriem  ben Tarjem, Barr El Aman for Research and Media

Introduction

Patient data has emerged as an important component of modern medicine. This is a powerful resource for medical research, innovation, epidemiological surveillance, and health policy development, and could significantly impact patient care quality. In this age of artificial intelligence and rapid technological advancement, it is more important than ever to exploit this data.

Tunisia, like several other MENA countries, is undergoing a shift toward data-driven healthcare. This transition requires establishing a data ecosystem that ensures access to and exploitation of patient data while ensuring their privacy and security. Therefore, Tunisia should pay particular attention to issues related to patient data governance, including identifying the associated challenges and implementing measures tailored to local requirements.

Case Study and Fieldwork

Our study aims to provide a comprehensive overview of patient data practices in Tunisia, within the Tunisian healthcare landscape. It offers insights into the opportunities, challenges, and potential remedies associated with this critical domain.

This was achieved by assessing the alignment between Tunisia's patient data governance reality and the internationally recognized "Principles of Health Data Governance." As a framework for designing and implementing national health data governance systems, these principles have been endorsed by several international organizations. They revolve around three interconnected objectives: 

1. Protecting individuals: Balancing privacy with societal benefits requires proactive measures to mitigate risks like harassment, discrimination, and surveillance.
2. Enhancing health value: Maximizing efficiency relies on optimizing data use and secure exchanges to understand healthcare needs. 
3. Ensuring equity: Inclusive governance demands representation across all societal segments, embedding human rights in data legislation to mitigate disparities and protect data contributors.

In order to provide a nuanced understanding of Tunisian healthcare institutions, we selected distinct types of hospitals, with varying degrees of digitization, to highlight significant disparities among them. We collected data from a diverse group of healthcare professionals across selected hospitals, including administrative staff, physicians, nurses, midwives, supervisors, managers, and engineers. Through the integration of insights from multiple stakeholders, our study seeks to capture a holistic picture of patient data practices.

Methodological Approach

Our study integrates research findings and context-specific insights to enrich discussions surrounding responsible health data governance and artificial intelligence in the MENA region. The case study adopts a comparative regional approach, ensuring methodological consistency with other MENA region case studies. To accomplish this, we utilized two data collection tools developed by A2K4D.

In the first instance, we utilized the data catalog, which provides a comprehensive overview of data practices. It covers the level of digitization by type of data (medical/clinical data, socio-economic data, administrative data), data sharing, storage systems used, data utility, and security procedures (anonymization, data encryption, consent for data usage).

Additionally, we developed a questionnaire based on the framework developed by the Access to Knowledge for Development Center at the American University in Cairo’s Onsi Sawiris School of Business (A2K4D) that examines various aspects of patient health data governance. This questionnaire addresses data collection, processing, sharing, storage, and protection, referencing the "Principles of Health Data Governance." The aim was to assess the degree of convergence between these principles and the reality of patient data governance in Tunisia.

The questionnaire was administered to healthcare professionals and complemented by semi-structured interviews. Through these interviews, we gained a deeper understanding of Tunisian patient data governance. We acquired more detailed perspectives, and achieved a more comprehensive and in-depth understanding of Tunisia's patient data governance.

Priority/Key Findings and Policy Recommendations

Despite the fact that healthcare institutions collect a substantial amount of patient data, its utilization remains complicated. This is due to disparities in digitization levels and fragmentation among data subsystems. This has a negative impact on care coordination, healthcare efficiency, and medical research progress. 

The Tunisian e-health program, which is intended to address these challenges through the deployment of electronic medical records (EMRs), faces challenges in its widespread adoption and effective implementation.

Health assessment, research, and technological innovation projects face obstacles in data governance, especially concerning sharing and processing. Obtaining a large, comprehensive sample is challenging due to heterogeneous data and scattered sources, which are exacerbated by accessibility issues. As a result of this complex and costly process, project development and progress are impeded. For example, it is difficult to obtain accurate information regarding the social determinants of health and territorial disparities. As a consequence, this obstacle obstructs the development of innovative projects, such as those based on epidemiological data and artificial intelligence. These types of projects require extensive data sets about patients in order to establish correlations and predict outcomes.

Several factors contribute to these challenges, including the prioritization of urgent issues over data governance, a lack of awareness by stakeholders of ethical and medical challenges, and financial constraints affecting technological infrastructure development and talent retention. In addition, there is a reluctance to share medical data because there is no credible source for organizing data and establishing standards.

In order to address these challenges, targeted training programs and the integration of data governance modules into university curricula are required to enhance digital proficiency in the healthcare sector. In addition, a reference body for the governance of patient data is essential in order to ensure compliance with regulations and international best practices. This entity would conduct assessments of EMR implementation. It would develop comprehensive guidelines for data collection, processing, sharing, storage, and security, and create a collaborative data ecosystem. These initiatives aim to increase awareness, commitment, and responsible utilization of patient data while promoting optimal and ethical use across diverse healthcare settings.

Conclusion

In conclusion, the immense value and potential of patient data highlights the critical need for a delicate balance between leveraging this information for beneficial purposes while rigorously protecting personal information. This equilibrium is essential for ethical and responsible data governance.

The challenges associated with patient data governance in Tunisia require a collaborative approach between policymakers, researchers, and healthcare professionals, in order to foster a culture of responsible data utilization and to implement effective strategies. In turn, this will lead to advancements in healthcare delivery, facilitation of medical research, and promotion of innovation within the healthcare industry.