A guide to Sharing the Data and Benefits of Public Health Surveillance

This guide provides information to facilitate data sharing aimed at improving and protecting public health. The result of a series of expert roundtables convened by Chatham House, it sets out seven principles that address key issues related to data sharing. The principles aim to help create the right environment for data sharing, and to facilitate good practice and encourage ethical sharing to the highest achievable standards; and can also help to identify opportunities for capacity-building. Underpinning all seven data sharing principles are four ethical principles: social value, respect, justice and transparency.

The guide is intended primarily for those involved in the process of sharing public health surveillance data for the purpose of improving and protecting public health. This includes public health agencies, ministries of health, NGOs, the private sector, academic institutions, multilateral organizations, publishers, funding bodies and others. For convenience, the key stakeholders involved in data sharing can be grouped as follows:

• Data providers – those who generate public health surveillance data, either from the community, the healthcare system, or from non-health sources.
• Data recipients – those who interpret and use data generated by others.
• Data sharing facilitators – those who facilitate sharing between data providers and recipients.

It is common for organizations to both provide and receive public health surveillance data. In addition, they can play a role in facilitating data sharing. It is therefore possible for an organization to belong to more than one group at the same time.

In public health, data sharing is most successful when a clear need is identified. This need may arise in situations that range from planned sharing of routine surveillance data to sharing in response to public health emergencies. Forward planning, where possible, is most efficient, so that data sharing systems are already in place if an emergency arises. This guide is intended primarily for those who identify a need to share public health surveillance data, or for those who encounter obstacles when engaged in data sharing arrangements, or when there is a need for a more sustainable, transparent or equitable sharing arrangement.

It should be noted that under the International Health Regulations (2005), there is a legal requirement to report cases of certain diseases and certain public health events to the World Health Organization (WHO). Routine disease surveillance serves as the foundation for effective emergency response. However, there are additional considerations when sharing data during public health emergencies. For example, although the principles set out in this guide still apply, there may need to be a greater emphasis on timeliness. WHO has published guidance on sharing data during public health emergencies that is complementary to this guide.

This guide sets out seven key principles that should be taken into account when a need to share public health surveillance data has been identified. Each principle is accompanied by two case studies, together with key points to consider when applying the principle. The principles are not hierarchical, nor do they follow a specific order. Not all parts of this guide are applicable in all circumstances, and users are able to customize the key points to consider according to their specific context. This guide also provides additional resources, including a model agreement that has been developed to assist those wishing to engage in a new, or consolidate an existing, data sharing activity.

To use this guide in a specific context key points to consider can be customized according to:

1. The type of organization represented:

State : including any organization that is part of the government structure, such as a ministry of health or public health agency.

Non-state : representing a broad range of organizations that may not have a formal role in surveillance but that might contribute to it, including non-governmental organizations, the private sector, academic institutions, publishers, funding bodies and others.

Multilateral : including organizations with a global or regional remit for health such as the World Health Organization or the European Centre for Disease Prevention and Control.

2. The role in the data sharing relationship:

Is the organization primarily a data provider, a data recipient or a data sharing facilitator? For more information on these roles, please refer to the ‘Who is this guide for?’ section.

3. The other organization(s) involved in the data sharing relationship:

The guidance available will be specific to data sharing between state organizations, between state and multilateral organizations, and between non-state actors and state or multilateral organizations.

4. The context:

Is the data sharing relationship part of routine activities or a health emergency? For more information on context, please refer to the ‘When to use this guide?’ section.

These settings can be changed at any time using the edit button.