Strengthening data sharing for public health: ethical, legal and political issues

Strengthening data sharing for public health: ethical, legal and political issuesMichael 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 4

Ethics issues

• Lack of reciprocity and shared benefits• H5N1 specimens in Indonesia

• Privacy and confidentiality

• Lack of proportionality, data misuse• Data harvesting


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


Political issues

• Perceived political, economic risk

• Risk-averse policies

• Few incentives


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


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Outputs

High-level principles for data sharing 1. Articulating the value proposition2. Planning for data sharing3. Ensuring high-quality data production4. Collaborating in creating data-sharing

agreements5. Building trust and being consistent6. Understanding the context-specific legal

implications7. Monitoring and evaluating progress


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Ethics

• Public health purpose and data protection• Sharing benefits• Global ethical framework

• Ethical principles for data sharing 1. Social Value2. Respect 3. Justice 4. Transparency


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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


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Public Health Surveillance: A Call to Share Data


• “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


• 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.

Thank you


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

Education

Strengthening data sharing for public health: ethical, legal and political issues