National Data Guardian stresses need to be “straight with people” on data processing after seeing attempts to bypass safeguards
The National Data Guardian for Health and Social Care, Dr Nicola Byrne, has highlighted the importance of using language accurately, after seeing attempts by organisations to “falsely describe” some activities that rely on patient data, such as population health management, as “direct care”.
In a statement issued to mark her reappointment to the role, she warned: “This attempts to bypass bureaucratic yet essential safeguards that ensure the data processing for secondary uses has an appropriate legal basis.
“However, calling something ‘direct care’ does not make it so. Language that does not reflect reality corrodes truth and, thereby, trust, so we need to challenge it whenever we encounter it.”
The National Data Guardian advises the health and adult social care system in England to help ensure that people's confidential information is kept safe and used properly.
Speaking about what she has learnt in the role to date, Byrne considered:
- The prerequisites for establishing public trust
- The interconnectedness of our health
- The importance of being straight with people
The National Data Guardian observed the importance of the public feeling confident that effective measures, such as deterrents, are in place to prevent inappropriate access to people’s medical records by those who work in or alongside health and care organisations.
Deterrents include technical, contractual, legal, and professional safeguards, including sanctions if breaches occur.
She said: “It is not enough to have deterrents in principle, sanctions must be enforceable and impactful to uphold public trust in the integrity of the system itself.”
The National Data Guardian observed that many people still have doubts about third-party involvement with their data.
She said: “They may feel uneasy about private companies managing data on behalf of the NHS, or about commercial organisations accessing data for research or innovation.”
However, she added that the concerns can potentially be addressed, provided there is “strong, transparent and trustworthy governance around decision-making”, demonstrating public benefit, and implementing safeguards.
The National Data Guardian is due to publish an annual report with refreshed strategic objectives and details of work carried out in the last year to promote values of transparency, accountability and fairness.
Lottie Winson
