Artificial intelligence guidance for patients and service users

A health and care organisation may use your personal information in AI systems to provide you with individual care. AI can help a health and care professional reach a decision about your care, for example, diagnosing a condition you have or helping you choose a treatment option. In these cases, your consent to the use of your data is implied. Decisions will not be made by the AI system. Health and care professionals will always provide advice and allow you to make the final decision on the care and treatment you receive.

AI-based technologies may use algorithms which allow the technology to learn using data. This is a purpose beyond your individual care, because the data is not being directly used for your own care, but instead the care of many others in the future. For example, lots of images of skin growths (moles) and information about whether or not they are cancerous can be used to train a system to assist in the detection of cancer. For purposes such as these, data may be taken from your health and care records and accessed by developers working in collaboration with the NHS. Only the specific information needed for training algorithms will be used, and wherever possible, identifying information such as your name and address will be removed or replaced with a code to protect your confidentiality.

If there is a chance that your data could enable the staff developing training algorithms to identify you, they would have to submit an application to use confidential patient information to the Health Research Authority’s Confidentiality Advisory Group (CAG). The CAG carefully considers the proposed use of the data against a number of factors: what is in the public interest, how necessary each piece of information is and how it will improve people’s care. The organisation must provide evidence of strong justifications for using the data.

Your confidential patient information will not be used for marketing or insurance purposes (unless you request this). You can read more about who decides how information is accessed in the Understanding Patient Data guidance.

Health and care organisations will inform you of the ways in which your confidential patient information is used, for example, via information on their website or on noticeboards. If you have concerns about your information being used for these purposes, you should speak to the professionals who are caring for you. You have the right to ask for your information not to be used.