By: Nada Nassar & Alia Shaddad

Context

Over the past few years the collection of health-related data has accelerated due to the COVID-19 pandemic. It is estimated by the World Economic Forum that 30% of the world’s data volume is generated by the healthcare industry alone. The rapid collection of health data emphasizes the importance of proper data governance to maintain data security and respect for human rights. In the context of the Middle East and North Africa (MENA), the protection of health data within data privacy laws is an area that requires development. Now more than ever, it is critical that we consider what types of data are being collected, how they are collected, from whom, how we share, store and secure data, and who has access to it. 

In a bid to explore these questions, researchers from the Access to Knowledge for Development Center (A2K4D) at AUC’s School of Business, as representatives of the MENA Observatory on Responsible AI, recently attended the Healthcare Governance Forum held in Cairo on June 27th, 2024. The forum was organized collaboratively by the Egyptian Ministry of Health and Population, the National Institute for Governance and Sustainable Development (NIGSD), the Medical Affairs Secretariat of the Cabinet, the Ministry of Planning and Economic Development, as well as Thunderbird School of Global Management in the United States. This event served as a crucial platform for stakeholders in the Egyptian healthcare system to discuss the importance of governance in achieving quality and transparency in health.

As the MENA hub for Responsible AI, we have been actively engaged in research on health data governance. The thematic focus of the research conducted was on responsible data governance in healthcare. The objective has been to assess the governance of health data in different healthcare settings, identify gaps, and provide policy recommendations for the governance of responsible data and AI for MENA. 

Effective Governance: Understanding What’s at Stake

At the outset,  Dr. Sherifa Sherif, Executive Director of NIGSD, stressed that the quality of healthcare services hinges crucially on effective governance. Governance, spanning different spheres from corporate to data and digital governance, dictates the management of state processes, structures and institutions. Dr. Sherif argued that the fundamental pillars of proper governance act as a guide for best practices of governing health operations, accountability, participation, transparency, justice and rule of law, control of corruption, responsiveness, equity and inclusiveness, and efficiency and effectiveness. These pillars are particularly vital for managing and governing health and digital data responsibly. Upholding these standards is fundamental to safeguarding patient rights, improving efficiency and providing equitable healthcare services to all citizens.

At A2K4D, we believe that effective governance is pivotal in ensuring the highest quality services in the healthcare sector. In our most recent policy brief highlighting the state of the sector, we identified several key challenges facing the MENA region: 

1. Lack of proper health data collection mechanisms (Egypt, Tunisia, and Palestine)

2. Consent practices for data collection lack standards (Egypt, Morocco, and Palestine)

3. Poor health data quality (Egypt, Tunisia and Palestine)

4. Inefficient data storage mechanisms (Egypt, Tunisia and Lebanon)

5. Inefficient data retrieval mechanisms (Egypt, Palestine and Morocco)

6. Lack of data-sharing practices (Egypt, Tunisia, Lebanon, and Palestine)

7. Inefficient legal frameworks  (Egypt, Tunisia, Lebanon, and Palestine)

8. Limited technological infrastructure and needed resources (Egypt, Morocco and Palestine)

9. Lack of the needed capacities and skills among frontline healthcare workers (Egypt, Tunisia, Morocco and Palestine)

While there are similarities in the challenges that shape data governance in the healthcare sector in the MENA region collectively, there is still a need to analyze the specificities of each country. As such, this blog focuses specifically on the Egyptian health ecosystem.

Advancing Healthcare Governance in Egypt: Healthcare for All

In light of the demographic pressures and Egypt’s expanding population, institutional governance in public hospitals and medical institutions has never been more pressing. Indeed, investments into improving data governance infrastructure, systems, and processes is essential for ensuring that  the needs of all Egypt’s citizens are met. Within this context, good governance is vital for maintaining an efficient healthcare system that delivers quality care universally, regardless of demographic or socio-economic factors.  However, the current landscape of governance in Egypt’s healthcare sector is marred by many obstacles. These challenges underscore the need for proactive measures to enhance governance practices, many of which were addressed in the forum resulting in key recommendations that highlighted the need to establish a comprehensive code of ethics, implementing comprehensive training and robust capacity-building initiatives for medical personnel on data collection, processing, storage, security and utilization., and developing a curriculum focused on health sector governance for undergraduate and graduate medical students. By taking these steps, we can foster a healthcare environment that prioritizes patient-centered care throughout Egypt.

Governance of Health Data: Where Does Egypt Stand Today?

In a powerful statement, Dr. Said asserted that proper health governance hinges on managing personal data appropriately. Without the proper collection and governance of health data, Egypt risks falling behind in adopting emerging technologies. Adding to this conversation, Dr. Khaled Abdel Ghaffar, Minister of Health and Populationadvocated for a data-driven approach using data to inform healthcare policies and improve health outcomes for the public. This will ensure the creation of reliable datasets and will equip healthcare professionals with the skills necessary to leverage new technologies effectively.

Discussions about AI, robotics, and other new technologies are trending globally, and within it Egypt is in a transitional period. The Egyptian healthcare system lags in terms of digitizing healthcare data, lacks robust technological infrastructure, and relies heavily on paper. In addition, there is a lack of health sector-specific governing laws and regulations that define the ways data can and cannot be used. These issues were mirrored within A2K4D fieldwork research, with frontline healthcare workers showing little to no awareness of data protection laws. Furthermore, data privacy policies in Egypt focus primarily on personal data, rather than health data, and many of these laws are not enforced or translated into practice. These inefficient legal frameworks were found among several of our regional country case studies including Tunisia, Lebanon, and Palestine.

To fill this gap, there is a need for dialogue and collaboration between healthcare institutions and law makers to create a unified guideline that ensures proper data governance mechanisms that are specific to the health sector. A regulatory body must also be formed to ensure that these laws are enforced on a national level. In April 2023, Egypt’s National Council for Artificial Intelligence launched the Egyptian Charter for Responsible AI which served as the first step towards defining guidelines on the responsible and ethical innovation, deployment and governance of AI systems. Yet while this step is a move in the right direction, there is still much work to be done.

We Need A Collaborative Approach 

The healthcare sector involves many stakeholders including several government agencies, healthcare providers, patients and families, civil society organizations, and the private sector. Due to fragmented efforts across different stakeholder entities, establishing effective governance mechanisms becomes challenging, particularly because diverse stakeholders have unique priorities and interests. However, this complexity underscores the critical need for collaborative approaches. Indeed, by bridging these gaps, we can create synergies that pave the way for comprehensive healthcare delivery. A2K4D research also shows that health entities in Egypt are not open to data sharing and operate in silos with data systems that lack interoperability, which further exacerbates this fragmentation.

At the A2K4D, we are committed to fostering collaboration between AI experts, healthcare professionals, and policymakers. Through our MENA AI Observatory, we aim to contribute to a future utilizing responsible AI to develop the healthcare sector in the region. The MENA AI Observatory has been particularly interested in exploring the potential of AI in enhancing data governance by utilizing responsible AI practices, leveraging responsible AI to develop more robust strategies in the healthcare sector, and employing responsible AI to optimize the allocation of resources in different arenas in the healthcare sector.

Moving Forward: Possibilities for the Healthcare Sector

The forum tackled key issues in the healthcare sector and its governance and provided recommendations for possible opportunities to move forward. As a summary, some of the key insights from the forum include:

• Data Governance and Digital Transformation: Leveraging technology to enhance data management and empower data-driven decision-making.

• Governance of Preventive Services: Highlighting the importance of preventive care for better overall health outcomes.

• Internal Audit and Governance Practices: Ensuring accountability and transparency through robust internal auditing systems.

Stay tuned to the MENA Observatory on Responsible AI for outputs related to the governance of health data in Egypt and other MENA countries.