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WHO mandates health-related data sharing


KEY TAKEAWAYS

  • WHO’s new data sharing policy aims to increase data sharing to improve public health.
  • The policy includes practical guidance to plan for data sharing from the outset of projects.

With continued calls to improve data sharing, World Health Organization (WHO) has become the latest organisation to mandate the practice. In what’s billed as an important step to improve the health and well-being of one billion people, WHO’s new policy stipulates that all health-related data from WHO-associated projects must be made available for research purposes.

To facilitate this goal, research projects and technical programmes funded or carried out by WHO must now develop a data management and sharing plan, ideally before any data are collected. Dr Soumya Swaminathan, WHO Chief Scientist, explained the reasoning behind the new policy: “When data related to research activities are shared ethically, equitably, and efficiently, there are major gains for science and public health.”

“When data related to research activities are shared ethically, equitably, and efficiently, there are major gains for science and public health.”

The move follows a similar decision by the National Institutes of Health (NIH) and reflects  growing support among researchers for compulsory data sharing. The reality of data sharing behaviour is, however, rather different. This is attributed in part to a lack of resources, skills, and incentives.

To combat the challenges, WHO have issued practical implementation guidance alongside the policy. The authors signpost suitable repositories, give guidance on anonymisation and de-identification of personal data, and provide a draft template for creating a data sharing plan. They also advise on preparing data for sharing, encouraging adherence to the FAIR principles to ensure data are:

  • findable
  • accessible
  • interoperable, and
  • reusable.

As Dr Iain Hrynaszkiewicz, Director of Open Research Solutions at Public Library of Science (PLOS), noted in our recent interview, mandatory data sharing policies can be very effective: “Often amongst the top incentives to share research data are journal, and funder, policies. If implemented effectively, these policies are proven to work.”

With an increasing number of publishers and funders adopting such policies, data sharing is becoming a critical component of publication planning.

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What do you think – can compulsory data sharing lead to improved global public health?

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