The NHS is prohibited from selling patient data for commercial gain. The focus is on using patient data securely to improve healthcare. However, when it leaves the NHS, what may happen to it then? There are concerns over privacy and consent.
The NHS data can be used for several legitimate purposes. These include improving services such as anonymised data used for research for better treatments, identify disease and health trends and allocate resources correctly and effectively. The question of whether NHS patient data should be commercialised raises complex ethical, legal, and societal implications.
Your personal identifiable patient data can be shared between providers, the commonest example between your GP and hospital to enable the best possible coordinated care.
Aggregated (anonymised) data can help monitor the spread of diseases and plan public health campaigns. This is driven by increasing demands for healthcare data-driven innovation.
Aggregating and analysing large-scale datasets, researchers and healthcare providers can gain valuable insights into disease patterns, treatment effectiveness, and public health trends. This data-driven approach has the potential to accelerate medical discoveries, personalise treatments, and improve healthcare delivery for patients across the UK.
The commercialisation of NHS patient data raises profound concerns about privacy, confidentiality, and individual rights. Patients entrust healthcare providers with sensitive personal information, expecting it to be used solely for the purpose of their care. The sale of patient data to third-party entities, including pharmaceutical companies, technology firms, and research institutions, raises questions about informed consent, data security, and the potential for exploitation or misuse of personal health information.
Selling of NHS patient data requires transparency, accountability, and ethical oversight. While data sharing and collaboration are essential for advancing medical research and innovation, they must be conducted in a manner that respects patients’ rights, safeguards their privacy, and upholds the principles of beneficence and non-maleficence. Robust governance frameworks, strict data protection standards, and clear guidelines for data use and sharing are essential to maintain public trust and confidence in the NHS.
Healthcare providers and policymakers have a moral and legal obligation to prioritise patient rights, autonomy, and welfare. Any decision regarding the sale or sharing of NHS patient data must be guided by principles of transparency, accountability, and respect for individual privacy. Patients must be fully informed about how their data will be used, who will have access to it, and what safeguards are in place to protect their confidentiality and security.
There are proposals of establishing an NHS data trust as a public-private company to facilitate use of NHS data for both public health research and commercially successful artificial intelligence innovation. This is a recommendation to see NHS data to fuel a cost cutting and efficiency boosting AI revolutions.
The NHS may profit from the sale of products or service derived from its data, but this is not likely. For commercial entities to pay revenue generating rather than cost recovery prices for NHS data the data must need no preparation for the purchaser, requiring the NHS to be fully responsible for data cleaning curation and standardisation. This requires a skilled resource that will be intensive and expensive. The revenue might be derived for secondary products or services that may be unrelated to health and may undermine it.
There is the need to steer away from a retail model of the NHS. May be to create a tiered rental model run by a nonprofit community interest company and datasets to be kept in suitably functional trusted research environments access to which could be rented for purposes pre-approved by a patient and citizen board.
Ownership of NHS data would never change hands.
Access now, is granted only to authorised individuals and organisations with a legitimate reason, such as researchers, public health agencies, or other healthcare providers involved in your care.
You have the right to opt-out of sharing your data for research purposes. You can visit https://www.nhs.uk/using-the-nhs/about-the-nhs/opt-out-of-sharing-your-health-records/ to learn more and make your choice.
The NHS prioritises data security and privacy. Your information is only used for legitimate healthcare purposes. You have control over how your data is shared.
Learn more about how the NHS uses your data at https://www.gov.uk/government/publications/the-nhs-constitution-for-england/the-nhs-constitution-for-england.