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Strengthening data sharing for public health:
ethical, legal and political issues
Michael Edelstein, Consultant Research Fellow
Centre for Global Health Security, Chatham House
@epi_michael
GMI9 Conference , 23-25 May 2016

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Overview
• Barriers to data sharing
• Data sharing: creating the right environment and
achieving good practice
• Making data sharing the norm
Chatham House | The Royal Institute of International Affairs

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Sharing public health surveillance data
• Sharing data improves public health
• Health implications of not sharing
• Sharing public health surveillance data is not the
norm
• Six main barrier categories
• Technical
• Legal
• Ethical
• Political
• Motivational
• Economic
Chatham House | The Royal Institute of International Affairs

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Chatham House | The Royal Institute
of International Affairs
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Ethics issues
• Lack of reciprocity and shared benefits
• H5N1 specimens in Indonesia
• Privacy and confidentiality
• Lack of proportionality, data misuse
• Data harvesting

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Chatham House | The Royal Institute
of International Affairs
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Legal issues
• Few global legal frameworks
• IHR
• Complex legal landscape
• National vs Regional vs Global
• Used as an excuse not to share
• One-sided agreements

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of International Affairs
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Political issues
• Perceived political, economic risk
• Risk-averse policies
• Few incentives

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Strengthening Data Sharing for Public Health
• Providing guidance to create the right
environment and achieve good practice
• Targeting three stakeholder groups:
• Data producers
• Data users
• Data facilitators
• High-level and context-specific guidance

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Work to date
• Briefing papers
• Barriers and solutions
• Lessons from other sectors
• Strategic round tables
• Thematic round tables
• Legal, Ethics, standards, DDD
• Regional round tables
• Asia, Africa
• Guidance expected October 2016
• Online and hard copy
Chatham House | The Royal Institute of International Affairs

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Outputs
High-level principles for data sharing
1. Articulating the value proposition
2. Planning for data sharing
3. Ensuring high-quality data production
4. Collaborating in creating data-sharing agreements
5. Building trust and being consistent
6. Understanding the context-specific legal implications
7. Monitoring and evaluating progress
Chatham House | The Royal Institute of International Affairs

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Ethics
• Public health purpose and data protection
• Sharing benefits
• Global ethical framework
• Ethical principles for data sharing
1. Social Value
2. Respect
3. Justice
4. Transparency
Chatham House | The Royal Institute of International Affairs

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Guide to Developing Data-Sharing Agreements
• Legal instruments are tools, not barriers
• Context specific
• Two-way, equitable agreements
• Guide to Developing Data-Sharing Agreements
• Legally vs non legally binding (MoU)
• Addresses ethical barriers including shared benefits
• Model agreement to provide necessary language
Chatham House | The Royal Institute of International Affairs

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Public Health Surveillance: A Call to Share Data
Chatham House | The Royal Institute of International Affairs
• “The norm should be for data to be accessible in a timely
manner for public health action while taking appropriate
steps to safeguard the privacy of individuals and other
legitimate public interests”
• “The consequences of making a decision to withhold data
can be critical, and those considering such a decision
must be ready to justify their actions”
• “Unacceptable for organizations to claim ownership of,
and restrict access to, public health surveillance data
when that would decrease potential health benefits
derived from these data”

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Public Health Surveillance: A Call to Share Data
Chatham House | The Royal Institute of International Affairs
• We call on stakeholders to commit to the
following:
• To share public health surveillance data by default where a
public health need is identified, in a timeframe necessary for
public health decision-making and to the highest standards they
can achieve.
• To use public health surveillance data responsibly, with the
intention of protecting and improving the health of the
population and in accordance with the agreed terms
• To articulate the value proposition for sharing in an explicit,
clear, and accessible way - the benefits should be evident to all
• To ensure that public health surveillance data are shared with as
few restrictions as possible, and with a commitment to principles
of social beneficence, respect, justice and transparency.

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Thank you
Chatham House | The Royal Institute of International Affairs
Prof David R Harper
Senior Consulting Fellow, Centre on Global Health Security
Matthew Brack
Project Manager, Centre on Global Health Security
Asha Herten-Crabb
Project Coordinator, Centre on Global Health Security