10 The policy described here covers the reuse and sharing for research purposes of health data collected under the auspices of WHO technical programmes. Its scope includes research undertaken directly by WHO, or funded by the Organization, as well as the use of other health data for research purposes.
20 The sharing of data for research purposes must be undertaken in ways that are equitable, ethical and efficient, and ensure that the data are findable, accessible, interoperable and reusable (see section XXII.1.1, paragraph 60).
30 Any approach to the sharing of data for research purposes should recognize and balance the needs of participants and researchers who generate and use the data, other analysts who might want to reuse the data and those communities who expect health benefits to arise from research.
40 All sharing of data for research purposes should balance and protect the privacy of individuals and the dignity of communities, while acknowledging the imperative to improve public health through the most productive use of the data.
50 Any approach to sharing of data for research purposes should be aimed at enhancing or optimizing the quality and value of the use of those data and enabling their contribution to improving public health. Data sharing should be done as promptly and in as open a manner as possible, building on existing norms, policies and practices and reducing unnecessary duplication and competition.
Data management and sharing plan
60 WHO staff and researchers whose work is funded by or through WHO must develop a data management and sharing plan for each data set for which the Organization has responsibility. Examples of templates are available upon request from DDI.
70 Data sets should be cleaned to ensure that no participant information is included, or anonymized (see section XXII.3.4), deposited in an appropriate data repository (see section XXII.6.7) with a persistent identifier (such as a Digital Object Identifier or DOI) and made available an open licence (see section XXII.6.4).
80 Data sets should be described using appropriate metadata. The metadata should include a description of where the full data set is deposited, with links to underlying data or extended data, and any relevant materials or software necessary to understand, assess and replicate the research.
90 The same requirements apply to research articles that are funded in whole or in part by WHO (see section VIII.6.10, paragraphs 60–70). These should include a data availability statement with links to underlying data or extended data and any relevant materials or software necessary to understand, assess and replicate the research.
100 In cases where data cannot be made publicly available for ethical, legal and/or confidentiality reasons, a metadata record should be created in an appropriate data repository (see section XXII.6.7) with a persistent identifier, such as a DOI. The data availability statement should indicate the restrictions, the process for applying for access to the data and the conditions that will apply for reuse.
