Governance and Editorial Principles

  • Uphold high ethical and moral standards of editorial conduct.

  • Appoint a balanced multi-stakeholder editorial board.

  • Be transparent about:

    • relevant interests;

    • our principles;

    • board decisions.

  • Make clear the purpose of Data Saves Lives, which is to:

    • convey real-world examples of how health data are being used to generate research results of societal value;

    • demonstrate how health data for research is being used in trustworthy ways;

    • encourage and structure stakeholder discourse about data use and acceptable safeguards.

  • Make clear what our purpose is not:

    • It is not to promote the importance of, or to defend, any stakeholder group or actor.

    • It is not to make generalised statements on which kinds of user should be permitted access to health data for research.

    • It is not to advocate any universally appropriate purposes of use.

  • Ensure transparency regarding the funding of Data Saves Lives and the limitations of funder influence on our content.

  • Explanatory materials and resources must be factual.

  • Be aware of the cultural sensitivities regarding the use of data in research.

  • The spectrum of case study examples must be balanced across:

  • types of user;

  • purposes of use;

  • geographies;

  • health systems;

  • types of health data;

  • positive, negative and inconclusive examples.

  • disease areas;

  • kinds of research;

  • various lifecycle points of discovery and development;

  • publicly and industry sponsored;

  • Utilise interviews and quotes that are balanced across stakeholders and attitudes, reflecting a proportioned variety of opinions including those that are conservative about the use of data for research.

  • Ensure a mix across data subjects, data users and research beneficiaries.

  • Publicise well-conducted openly-published studies on citizen perspectives and preferences for the use of their health data, for research and other reuse purposes.

  • Present factual reports on innovations in data protection and security, forthcoming legislation, and emerging standards (such as codes of practice), that enable safer handling of health data.

  • Make sure all case studies, interviews and quotes are not promotional, nor making unfounded promises or accusations.