Text for inclusion in data collection forms in all data collection tools (paper-based, electronic or other) used by WHO to collect data from Member States
Data are the basis for all sound public health actions and the benefits of data-sharing are widely recognized, including scientific and public health benefits. Whenever possible, the World Health Organization (WHO) wishes to promote the sharing of health data, including but not restricted to surveillance and epidemiological data.
As used in this data collection tool, the term "Data provider" means a duly authorized representative of the governmental body with authority to release health data of the country to WHO (i.e. the Ministry of Health or other responsible governmental authority). The recipient of this data collection tool is responsible for ensuring that he/she is the Data provider, or for providing this data collection tool to the Data provider.
In this connection, and without prejudice to information sharing and publication pursuant to legally binding instruments, by providing data to WHO, the Data provider:
- confirms that all data to be supplied to WHO (including but not limited to the types listed in Table 1) hereunder have been collected in accordance with applicable national laws, including data protection laws aimed at protecting the confidentiality of identifiable persons;
- agrees that WHO shall be entitled, subject always to measures to ensure the ethical and secure use of the data, and subject always to an appropriate acknowledgement of the country:
- to publish the data, stripped of any personal identifiers (such data without personal identifiers being hereinafter referred to as “the Data”) and make the Data available to any interested party on request (to the extent they have not, or not yet, been published by WHO) on terms that allow non-commercial, not-for-profit use of the Data for public health purposes (provided always that publication of the Data shall remain under the control of WHO);
- to use, compile, aggregate, evaluate and analyse the Data and publish and disseminate the results thereof in conjunction with WHO’s work and in accordance with the Organization’s policies and practices.
Except where data-sharing and publication are required under legally binding instruments (International Health Regulations (2005), WHO Nomenclature Regulations 1967, etc.), the Data provider may in respect of certain data opt out of (any part of) the
above, by notifying WHO thereof in writing at the following address, provided that any such notification shall clearly identify the data in question and clearly indicate the scope of the opt-out (in reference to the above), and provided that specific
reasons shall be given for the opt-out.
Director Strategy, Policy and information (SPI)
World Health Organization
20, Avenue Appia
1211 Geneva
Switzerland
Table 1. List types of data provided to WHO (non-exhaustive) | |
| Data types | Examples |
| WHO-supported household surveys | WHO Strategic Advisory Group of Experts (SAGE) on Immunization, WHO STEPwise approach to surveillance (STEPS), World Health Survey |
| Unit record mortality data | (Not currently collected by WHO headquarters, but by the WHO Regional Office for the Americas/Pan American Health Organization) |
| Aggregated mortality data | WHO Mortality Database |
| Aggregated health facility data | DHIS 2.0 data (not currently collected by WHO headquarters, but hospital data are collected by the WHO Regional Office for Europe) |
| Case-based health facility data | WHO Global Burn Registry data[1] |
| Health expenditure data | WHO Global Health Expenditure Database (National Health Account indicators) |
| Health facility surveys | Availability of medicines and diagnostics |
| Health research data (other than clinical trials)[2] [3] | Case–control investigations, prospective cohort studies |
| Key informant surveys | Existence of national road traffic laws |
| National survey reports | Prevalence of hypertension or tobacco use |
| Disease surveillance data | HIV prevalence in pregnant women or tuberculosis treatment outcomes |
| Surveillance of notifiable diseases | Total number of cases of plague |
(1) Note: Case-based health facility data collection such as that in the WHO Global Burn Registry does not require WHO Member State approval.
(2) The world health report 2013: research for universal coverage. Geneva: World Health Organization;
2013 (http://apps.who.int/iris/bitstream/10665/85761/2/9789240690837_eng.pdf, accessed 21 February 2018).
(3) WHO statement on public disclosure
of clinical trial results: Geneva: World Health Organization; 2015 (http://www.who.int/ictrp/results/en/, accessed 21 February 2018).