Regional Data Sharing Policymaking: From Analysis to Action

1. Regional Data Sharing Policymaking: From Analysis to Action Presenter: Dr. Patricia Odero (Duke University Global Health Innovation Center) Co: Authors: Dr. Fatuma Adan (Intergovernmental Authority on Development), Dr. Ahmed Mohamed Bashir (Intergovernmental Authority on Development), Dr. UchennaNwokenna (Broad Reach Healthcare)

2. Project Overview • The Regional Action Through Data (RAD) initiative is a collaboration of organizations, including BroadReach Healthcare, Jembi Health Systems, Duke University, the West African Health Organization, and the Inter-Governmental Authority on Development (IGAD). • RAD supports data use by generating insights from diverse data sources and sharing information across borders • Through this project, Duke conducted a policy analysis of digital health and data sharing policies in countries in Eastern Africa and the Horn of Africa, including Uganda and Kenya, which showed that many countries lack a systematic framework for cross-border data sharing.

3. Policy Analysis

4. Methods • Desk review of policies related to Digital Health; Data Sharing; Immunization; IDSR, Outbreak, and Surveillance; Trade, Migration, and Cross-Border Populations; Pastoralist and Other Semi-Nomadic Communities • Key informant interviews with international, national and district level stakeholders in Uganda and Kenya • Site visits to cross-border areas in Kenya and Uganda (i.e., Tororo, Malaba) • Grid analysis to select strategic approaches to improve data sharing across borders

5. Grid Analysis Grid Analysis - Useful technique to use to make a choice where many factors must be balanced • Step1 : Likely strategic approaches (options) and the factors that should be deliberated to improve data sharing across border were listed and laid out in table format, with the options as the row tables and factors as the column headings • Step 2: A group consisting of IGAD and it’s partners then allocated weights to the factors according to their best judgmentStep 3 : . All the relevant choice and factor combinations in the table were marked according to the assessment done Step 4 : Scores for the options were then added and the options that scored the highest selected.

6. Results

7. Policy Gaps Identified • Legal Frameworks and Practices for Data Sharing • Data Protection and Storage • Patient Confidentiality

8. Policy Issue One: Legal Frameworks and Practices for Data Sharing • Many countries in the region currently lack a legal or regulatory framework for cross-border data sharing • Information may not be shared across borders • Patient confidentiality/privacy may be compromised • The quality and type of data shared could pose an issue to parties involved • Governance structures and standard operating protocols for data use vary in content and legislative status

9. Key Challenges from Policy Issue One • Lack of regional legal or regulatory framework for cross-border data sharing • Lack of clear central coordination mechanism for organization of data sharing policies • Lack of a common normative standard that influences data sharing practices

10. Policy Issue Two: Data Protection and Storage • Health data is considered to be personal, sensitive and highly confidential • There is currently no comprehensive law or regional legal framework to safeguard collected data to ensure that it is used only for the purpose for which it is intended • High and consistent standards of data protection and security in all of the countries in the region is essential • To govern the integrity and circumstances relating to the use, storage and processing of health data within and across the borders • For the protection against the harm that might result from unauthorized disclosure and unauthorized access to health data

11. Key Challenge from Policy Issue Two • Current laws prohibit data storage outside of their jurisdiction

12. Policy Issue Three: Patient Confidentiality • Consistent patient confidentiality and privacy laws across countries in IGAD will help facilitate the cross-border flow of information • Compatible laws would ensure that the data from one country would be held with the same level of safety in another member state • Easier cross-border flow of information is critical to treating cross-border populations and addressing outbreaks

13. Key Challenge from Policy Issue Three • Differing levels of legal protection of health data between countries 

14. Grid Analysis and Strategic Approach Selection

15. Policy Issue one: Legal Frameworks and Practices for Data SharingChallenge: Lack of regional legal or regulatory framework for cross-border data sharing The region lacks a common legal or regulatory framework that permits cross-border data sharing. Without some sort of framework- whether bilateral or regional- most countries’ healthcare workers and administrators assume that cross-border data sharing is illegal and do not coordinate. [1]EAC Roadmap [2]EAC Roadmap

16. Criteria for Analysis ( Factors considered) • A: Political feasibility: includes actors and member state political environment; should fall within the IGAD mandate • B: Implementation feasibility: includes infrastructure and process changes required for implementation • C: Resource intensity: amount of human capital, and economic resources required for implementation • D: Time to full implementation: is this a short, medium or long-term strategy • E: Potential impact on cross-border data sharing objective: high, low, or medium

17. Grid Analysis Results: ExamplePolicy Issue one: Legal Frameworks and Practices for Data SharingChallenge: Lack of regional legal or regulatory framework for cross-border data sharing [1]EAC Roadmap [2]EAC Roadmap

18. All the strategic options to address the challenges identified were scored against the chosen criteria for analysis and the selected strategic approaches classified in to three main clusters • Policy • Technical Guidelines • Legal Framework

19. The policy option was selected due to the following reasons • It is within IGAD’s mandate • It will be achieved within a shorter time frame • Lessons from ongoing initiatives around legal agreements indicate that they require intensive monetary/time resources to achieve consensus

20. IGAD- RAD Steering Committee Meeting RecommendationJuly 14-15, 2018

21. Next Steps: Policy Making Process

22. Conclusion • Easier cross-border flow of information is critical to ensuring continuity of care for cross-border populations and addressing outbreaks. • Consistent standards of data protection & security and patient confidentiality laws across countries in the region are essential for data governance and will help facilitate the cross-border flow of information. • The development of a regional health data sharing policy by IGAD, that is endorsed by members states, and that is supported by other RECs, would address the existing policy challenges and risks related to cross- border health data sharing.