The current vocabulary for the use of patient data in care, treatment and research is difficult, complex and confusing. Many different words are used to describe the same thing, and many of those words are unnecessarily technical (for example pseudonymised, key-coded, de-identified for limited disclosure). This acts as a significant barrier to discussing the use of data with the public in ways that can build both understanding and confidence.
We think that an important part of improving conversations about patient data is getting the words right, in a way that is accurate but also accessible and meaningful. If everyone is on the same page in using these words, it’ll be easier for clinicians, patients, researchers and the public to have informed discussions about how patient data is used and why.
‘How to’ guide
Here is a quick guide to the words that research suggests most informative and clear for people.
Patient data
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Individual care
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Improving health, care and services through research and planning
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Identifiability
Many people express concerns that they might be identified when data is used. The technical language of identifiability (called ‘disclosure risk’) is complex, but if you need to talk about whether someone could be identified from the data, using pictures to help explain the concepts is helpful:
DOs and DON’Ts
- 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’.
The research
Background section on the basis for the vocabulary described above, with further details for interested users.
Understanding Patient Data commissioned Good Business to answer the question: “what is the best vocabulary to use to talk about the use of data for care, treatment and research?”
We held a creative workshop with a range of language experts, and then tested the words and imagery with the public, patients and healthcare professionals, using quickfire focus groups. The findings presented here underpin the rationale for the guidance listed above.