• It is important to distinguish between information ‘for you’ and ‘about you’. Most people (both public and healthcare professionals) think ‘health information’ is information ‘for you’, for example a fact sheet or a patient information leaflet. The best way of avoiding this is to talk about ‘information from your patient record’.
• Using the word ‘your’, in focus groups, some thought it made the terms clearer, others thought it was too individualistic and pointed the finger at them. There are also concerns that using ‘your’ perpetuates the idea of ownership of data, and is particularly misleading if used in the context of ‘your anonymised information’.
• If you talk about ‘medical records’ people often envisage their entire medical record being passed on and used: usually, data use involved a subset of information contained within a record, such as the Summary Care Record, or demographic information combined with diagnostic details.
• Try to avoid using ‘personal’ in the overarching term, especially if the data may be used in an anonymised form. This can end up causing greater confusion if you use a term such as ‘anonymised personal information’.