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Glossary

A glossary of terms used throughout this guide.

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Anonymization

The process of turning data into a form which does not identify individuals and where identification is not likely to take place. Source

Benefit sharing

The action of giving an equal share of the advantages/profits derived from the use of public health surveillance data to the data providers and to the community from which the data originate. Source

Big data

High-volume, high-velocity, and/or high-variety information assets that require new forms of processing to enable enhanced decision-making, insight discovery and process optimization.

Border

A boundary separating two countries, administrative divisions, or other areas. In the case of public health surveillance data sharing, borders may also appear between and within organizations. Source

Capacity-building

Measures that directly or indirectly mobilize the organizational, human, financial and other resources that enable actions to be taken by responsible authorities to improve health and reduce health inequalities. Source

Community

A community is the group containing the data subjects, although not every member of a community may be a data subject. Communities may be defined by one or several characteristics such as geography, ethnicity or age. Communities may experience risks and benefits relating to the sharing and use of data, independently from the risks and benefits experienced by individual data subjects.

Crowdsourcing

The act of obtaining information by enlisting the services of a large number of people, either paid or unpaid, typically via the internet. Source

Data provider

Data providers are those who generate public health surveillance data, either from the community, the healthcare system, or from non-health sources.

Data recipient

Data recipients are those who interpret and use data generated by others.

Data sharing facilitator

Data sharing facilitators are those who facilitate sharing between data providers and recipients.

Digital disease detection

Online technologies that provide data for disease or event detection are known as digital disease detection (DDD) systems and incorporate the use of established online tools such as search engine queries and social media, as well as emerging tools such as crowdsourced information, natural language processing and geolocalization.

Equitable

Fair according to the principles of distributive justice. In the context of health and data sharing, the concept of equitable benefits means the ability to benefit according to need. Source

Individual-level data

Data where the primary unit is the individual. Individual-level data may or may not be anonymized.

Justice

In the context of public health surveillance data sharing, justice refers to the equitable distribution of risks and benefits associated with a data sharing activity. Justice is one of four ethical principles underlying this data sharing guide, as set out on this page.

Memorandum of understanding

A non-binding agreement between two or more parties outlining the terms and details of an understanding, including each party’s requirements and responsibilities. Source

Multilateral

Agreed upon or participated in by three or more parties, especially the governments of different countries. Source

Multilateral organization

An organization formed between three or more nations to work on issues that relate to all of the countries in the organization. Examples of health-related multilateral organizations include the World Health Organization or the European Centre for Disease Prevention and Control. Multilateral organizations are distinct from multinational organizations.

Multinational organization

A multinational organization generally refers to a commercial entity with facilities and other assets in at least one country other than its home country.

Need-to-know basis

When patient identifiable information needs to be shared, the information shared should be restricted to the minimum required for the intended purpose, and should only be shared with those who require it to achieve that purpose.

Non-state organization

Any organization that is not part of the government structure.

Open data

Data that can be freely used, re-used and redistributed by anyone – subject only, at most, to the requirement to attribute and share-alike. Source

Parties

Signatories to the data sharing agreement.

Patient identifiable information

Any information that can be used to identify, contact, or locate an individual, either alone or in combination with other easily accessible sources. Source

Public health surveillance

The ongoing, systematic collection, analysis and interpretation of health-related data with the a priori purpose of preventing or controlling disease or injury and identifying unusual events of public health importance, followed by the dissemination and use of such information for public health action. Source

Respect

The due regard for the rights or wishes of others. Respect is one of four ethical principles underlying this data sharing guide, as set out on this page.

Sensitivity

The ability of a test or system to correctly identify those with a characteristic of interest (such as disease status).

Social value

The social value of sharing data can include but is not limited to knowledge generation, knowledge dissemination, education, training and capacity strengthening, and contributions to the expansion of a field of inquiry. Sharing public health surveillance data should contribute to social value by helping to enhance the public health of individuals and communities. Social value is one of four ethical principles underlying this data sharing guide, as set out on this page.

Specificity

The ability of a test or system to correctly identify those without a characteristic of interest (such as disease status).

Stakeholder

Stakeholders are people or entities that have the potential to benefit or be at risk from in the data sharing activity.

State organization

Any organization that is part of the government structure, such as a ministry of health or a public health agency.

Sustainable

Able to be maintained at a certain rate or level. Source

Transparency

Openness in decision-making and actions, including both the initial request to share surveillance data and subsequent use of the data. Transparency is one of four ethical principles underlying this data sharing guide, as set out on this page.