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. Uchenna Nwokenna (Broad Reach Healthcare)

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.

Policy Analysis

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

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 judgment Step 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.

Results

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

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

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

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

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

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

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

Grid Analysis and Strategic Approach Selection

Policy Issue one: Legal Frameworks and Practices for Data Sharing Challenge: 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 Strategic Options Facilitate bilateral data-sharing agreement, including definitions of data to be shared Create a central data sharing agreement that is signed by all IGAD member countries and provide a national health data policy template Identify a mechanism for addressing gaps in data sharing for member state health data policies and provide a national health data policy template Develop regional guidelines for data sharing across priority programs Some regional organizations have attempted to create a central data sharing agreement, but without success. Lessons learned include the need to involve a wide range of policymakers, private sector stakeholders, and health care workers in the planning process.

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

Strategic Options A B C D E Grid Analysis Results: Example Policy Issue one: Legal Frameworks and Practices for Data Sharing Challenge: Lack of regional legal or regulatory framework for cross-border data sharing Strategic Options A B C D E Develop regional guidelines for data sharing across priority programs 3 2 13 Facilitate bilateral data-sharing agreement, including definitions of data to be shared 12 Create a central data sharing agreement that is signed by all IGAD member countries and provide a national health data policy template   1 9 Identify a mechanism for addressing gaps in data sharing for member state health data policies and provide a national health data policy template [1] EAC Roadmap [2] EAC Roadmap

Policy Technical Guidelines Legal Framework 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

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

IGAD- RAD Steering Committee Meeting Recommendation July 14-15, 2018

Next Steps: Policy Making Process Problem Identification and Agenda Setting Research Current and Best Practices Policy Formulation Stakeholder Buy In Policy Adoption and Budgeting Policy Implementation Policy Evaluation

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.