Table 1 Characteristics of surveillance systems for Lyme disease in humans (framework for data extraction and analysis)

Traditional systems

Administrative level

The responsibility to regulate and implement the system lies with the authority at the:

• National level; OR

• Subnational level

Key indicators

Definition of what is recorded as “Lyme disease”. More than one could be used:

• Use of a case definition for EM, LNB, and/or other “late” clinical manifestations (e.g. Lyme carditis or arthritis), and whether these are based on clinical signs only and/or confirmed with a laboratory test. Where several levels of confidence are used (e.g. probable, confirmed), the definition for confirmed cases was extracted

• Positive laboratory tests;

• Medical patient consultations for tick bites, EM or other manifestations

Reporting entity

Unit responsible for reporting a positive case to the system:

• The clinician treating a patient with the disease; OR

• The laboratory; OR

• Both the clinician and laboratory, either in the same or different areas of the country

Coverage

The surveillance system:

• Is comprehensive (all reporting units are invited or required to report data); OR

• Uses samples of reporting units (e.g. sentinels) or other non-comprehensive methods

Obligation

The reporting of information at the national level is:

• Mandatory (e.g. by law); OR

• Voluntary; OR

• It varies between areas

Public participatory websites and apps

Indicators

The system collects information directly from the general public using a website and/or app. Indicators: tick bites, EM and/or other manifestations