Dr. Maysaa Nemr and Hanin Al Basha
Institute of Community and Public Health, Birzeit University

Introduction

The healthcare sector globally, including the MENA region, is increasingly adopting digital technologies and artificial intelligence (AI). These innovations and tools have resulted in improved healthcare accessibility as well as coordination among healthcare providers. While these technologies have been instrumental in accelerating progress, they have also created complexities in health data collection, processing, storage, analysis, utilization, sharing, and disposal. Crucial questions have been raised about the presence of adequate legal and regulatory data governance safeguards, particularly in resource-constrained and fragile settings like Palestine .

Case Study and Fieldwork 

This research aimed to conduct a thorough examination of the health data governance landscape in Palestine. It is part of the “Governing Responsible AI and Data” Project conducted as part of a partnership between the Onsi Sawiris School of Business' Access to Knowledge for Development Center (A2K4D) at the American University in Cairo, and Birzeit University, and is supported by Canada's International Development Research Centre. 

Specific Objectives:

1. to gain insights into the existing practices and frameworks in health data governance and the state of the regulatory landscape across different levels, with a particular focus on women’s health data. 

2. to evaluate awareness and knowledge of health data governance among stakeholders at various levels within the health system. 

3. to identify gaps and offer policy recommendations for responsible data governance in the Palestinian health sector.

This research adopted a qualitative approach, utilizing in-depth semi-structured interviews with healthcare providers within the West Bank, Palestine. In order to reflect insights from different stakeholders, the research included the perspectives of: upper management and policy makers, healthcare providers including physicians, nurses, midwives, and lab technicians, health insurance employees, and administrative employees. 

Methodological Approach

To achieve these objectives, interviews with key stakeholders were structured around two main domains: (1) awareness of data governance and its importance, and (2) existing practices or frameworks related to health data governance in the Palestinian health sector. Two sets of interview questions were used: one for healthcare professionals and the other for policymakers, administrators, and insurance personnel. 

The interview tool was developed in accordance with the principles that the World Bank has developed and proposed under the coordination of the “Transform Health” initiative to guide the governance of health data across public health systems and policies. These principles are designed to inform and reinforce governance models, instruments, treaties, regulations, and standards worldwide, fostering a shared vision of equitable health data governance. They are regarded as a tool to promote the use of digital technologies and data for the benefit of everyone’s health and well-being. The principles encompass three interconnected objectives: (1) protect people – as individuals, as groups, and as communities; (2) promote health value – through data sharing and innovative uses of data; and (3) prioritize equity – by ensuring equitable distribution of benefits that arise from the use of data in health systems.

Data collection took place from June to August 2023. Most interviews were held at the stakeholders’ workplaces, with a few via Zoom software. We completed 20 interviews using audio recordings with consent, except for four stakeholders who preferred note-taking. 

Key Findings and Policy Recommendations

Our research revealed gaps in stakeholders’ awareness of health data governance regulations and principles. Data handling processes are not unified and are based on customary knowledge rather than written legislation, which was reflected in the inconsistent responses about either computer-based or paper-based methods used in data collection, processing, sharing, storage, and security. While the need for training healthcare providers and policymakers on health data governance was proposed by several stakeholders during the interviews, opportunities for training are limited to teaching participants how to use newly introduced systems in a healthcare facility. Stakeholders also referenced a major uncertainty of health data quality and accuracy. Furthermore, there is a concern over patients’ confidentiality and data protection, as program users often do not provide informed consent before data collection. 

Technical issues in electronic devices and data programs, in addition to the duplication in data collection using paper forms and computerized systems, hinder healthcare providers' workflow and increase work burdens. Policymakers were skeptical regarding data quality, accuracy, and integrity, and they stated that the data delivered to them is not always complete. In addition, healthcare providers mentioned that mistakes in data entry are not always edited before patients are discharged. 

These issues have been attributed to several factors:

1. Regulatory factors: lack of regulatory frameworks, laws, and regulations for health data practices and governance.

2. Economic factors: limited financial resources for digital health systems, leading to reliance on donor agendas, which in turn lead to unstructured and unlinked health information systems.

3. Healthcare workers' factors: limited awareness and training on proper data practices and health data governance principles.

There is an imperative need to improve and support the health system performance. This could be done through several steps: 

1. Develop a standardized regulatory framework for data handling, including procedures for data collection, processing, storage, and sharing, among all health sectors.

2. Integrate the health information systems in health facilities. 

3. Improve the health system’s IT infrastructure in order to meet the need for the huge amount of data. 

4. Provide training on data handling and regulations addressing data quality are priorities for validating health data. 

5. New procedures for validity checks should be established in the systems to minimize errors and enhance data quality. 

Policy Webinar

A policy workshop was held on January 8, 2024, via Zoom to present and discuss the case study’s results and gather recommendations from stakeholders in various health sectors in Palestine. The workshop covered the research objectives and findings, highlighted the importance of health data governance, identified gaps in current practices and frameworks, and addressed policy recommendations.

Key Outcomes:

• Identified Gaps: Issues related to governance legislation and regulatory frameworks, health system infrastructure, financial constraints, awareness of health data governance, and poor coordination among sectors.

• Recommendations: 

1. Plan for ethical and efficient use of health data, adopting a solidarity and participatory approach through an integrated health information system controlled by the government.

2. There have to be regulations addressing data quality dimensions to ensure that the data collected is complete, valid, accurate, and consistent. 

3. Develop an internal data sharing regulation for research purposes, which determines the research priorities in the MOH. 

4. Develop a Palestinian health data set determined for each health condition, which can be developed systematically later on. 

5. Policy measures need to be set to keep pace with technological progress. 

Conclusion

This case study on women’s health data governance in Palestine highlights significant gaps in awareness, regulatory frameworks, and data handling practices. Economic constraints and inadequate training further exacerbate the existing issues. Thus, there is an imperative need to support the health system’s performance, improve data quality, and foster efficient use of health data in Palestine. It is crucial and urgent to develop and implement a standardized regulatory framework for health data handling, enhance IT infrastructure, promote sectoral collaboration, and provide comprehensive training on data governance.

References

1. World Health Organization. (2014). eHealth and innovation in women's and children's health: a baseline review: based on the findings of the 2013 survey of CoIA countries by the WHO Global Observatory for eHealth, March 2014

2. Labrique, A. B., Wadhwani, C., Williams, K. A., Lamptey, P., Hesp, C., Luk, R., & Aerts, A. (2018). Best practices in scaling digital health in low and middle-income countries. Globalization and health, 14(1), 1-8.

3. Tiffin, N., George, A., & LeFevre, A. E. (2019). How to use relevant data for maximal benefit with minimal risk: digital health data governance to protect vulnerable populations in low-income and middle-income countries. BMJ Global Health, 4(2), e001395.

4. Under Transform Health's guidance, the health data governance principles were developed by multiple global and regional experts in digital health and data governance (200 digital health specialists from 130 organizations worldwide engaged in collecting and using health data), including governments, international organizations, civil society, academic institutions, and the private sector, to guide the use of data in health systems.

5. Transform Health. (2022). Health Data Governance Principles.  https://healthdataprinciples.org/principles.