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  • How Should Researchers Safeguard - Data Saves Lives

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    Costel Pop
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    Researchers must have a legitimate basis and ethical approval to use health data for research purposes that benefit society. They are expected to protect data securely according to codes of practice and only access the minimum data required. Anonymizing data reduces but does not eliminate re-identification risks, so researchers must be trained and adhere to conduct rules. Transparency and cooperation between all stakeholders is important to develop acceptable rules that respect patient preferences.

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    How should researchers safeguard — Data Saves Lives

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    Researchers must have a legitimate basis and ethical approval to use health data for research purposes that benefit society. They are expected to protect data securely according to codes of practice and only access the minimum data required. Anonymizing data reduces but does not eliminate re-identification risks, so researchers must be trained and adhere to conduct rules. Transparency and cooperation between all stakeholders is important to develop acceptable rules that respect patient preferences.

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    14 views4 pages

    How Should Researchers Safeguard - Data Saves Lives

    Uploaded by

    Costel Pop
    Researchers must have a legitimate basis and ethical approval to use health data for research purposes that benefit society. They are expected to protect data securely according to codes of practice and only access the minimum data required. Anonymizing data reduces but does not eliminate re-identification risks, so researchers must be trained and adhere to conduct rules. Transparency and cooperation between all stakeholders is important to develop acceptable rules that respect patient preferences.

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    © All Rights Reserved
    Download as PDF, TXT or read online from Scribd
    Flag for inappropriate content
    of 4

    Welcome (/)

    Health Data Explained


    Overview (/Health-Data-Overview)
    What Is Health Data? (/What-Is-Health-Data)
    What Is Big Data? (/Big-Data)
    Why Is Health Data Important? (/Why-Is-Health-Data-Important)
    Data Protection (/Dataprotection)
    Resources Center
    Overview (/Resource-Overview)
    Case Studies (/Casesummaries)
    Public Surveys (/Survey-Summaries)
    Glossary (/Glossary)
    Videos (/Video-Interviews)
    About
    What Is DataSavesLives (/Aboutdsl)
    Team (/Team)
    Editorial Board (/Editorialboard)
    Advisory Board (/Advisory-Board)
    Core Strategy Organisations (/Core-Group)
    Governance And Editorial Principles (/Governance-Editorial-Principles)
    #DataSavesLives (/Datasaveslives)
    Search (/Searchfield)
    Contact (/Contact-1)
    Blog (/Blog)
    Events (/Events)

    How should researchers safeguard the health data they


    analyse?
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    website run effectively.

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    /
    Organisations that conduct research must

    • have a legitimate and legal basis for using the data

    • show that their research is in society’s interests


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    website run effectively.
    • conduct the research ethically, usually with the approval of an independent
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    ethics review board or committee.
    /
    Researchers need to adopt strict codes of practice and security measures
    that comply with the GDPR. Codes of practice can ensure that the research
    purposes for which data are used meet the above criteria – they have a legal
    basis, are in society’s interests and are ethical. Surveys reinforce the strong
    message that the research must bring benefits to patient care, through
    improved services, new treatments and greater patient safety. This
    requirement ensures that the results of research using health data are
    translated back into improvements for patients.

    It is expected by patients that researchers who are given access to data in


    order to conduct research will protect the data with strong security
    measures, and only use the data for the purposes that are permitted.

    The data must be treated with care, and ideally each researcher should only
    be given access to the parts of the data they require to conduct their part of a
    research analysis. Data must always be handled securely. This is important
    because each person has some unique health characteristics. Even if their
    identifying details have been removed to anonymised (/glossary) or
    depersonalise (/glossary) the data, it is sometimes possible to have a clue
    about the identity of the person from their clinical information. For example, if
    somebody has a rare condition that perhaps only a few people have in their
    city or country, has an unusual combination of diseases, or has had a
    pioneering operation which was publicised, this means they could be
    identified. It is therefore important that researchers are trained in how to
    protect data securely and have to adhere to a code of conduct. That code of
    conduct must make clear that researchers cannot disclose data to anyone
    else, and must not use it for any purposes except for the approved research.
    The public in general should always be assured that their preferences for
    how their data are used are being respected.

    All healthcare and research stakeholders need to work together with patients
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    website run effectively.
    and members of the public in applying codes of conduct and rules that
    everybody
    OK finds acceptable. Codes of conduct and other rules about
    /
    protecting data must be made public, so there is full transparency to
    everybody about what rules must be obeyed and what conduct is expected
    from all research users.

    ()
    DISCLAIMER (/DISCLAIMER)
    P R I VA C Y P O L I C Y ( / P R I VA C Y- P O L I C Y )
    HOME (/HOME)
    C O N TA C T U S ( / C O N TA C T- 1 )
    SEARCH (/SEARCHFIELD)

    Your health data matters

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    website run effectively.

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