The current vocabulary for the use of patient data in care, treatment and research is complex and confusing. An important part of improving conversations about patient data is getting the words right, using words that are accurate but also accessible and meaningful. The words suggested here are the result of research commissioned by Understanding Patient Data, based on testing with the public and healthcare professionals.
Data or information?
‘Patient data’ and ‘Patient health information’ are the most effective overarching terms to use.
‘Patient data’ seems to be the easiest word for people to ‘get’.
There is no right or wrong: there are pros and cons for both and it may be helpful to adopt a dual approach using both ‘data’ and ‘information’, because different people respond in different ways to each phrase.
‘Data’ makes people think about numbers and codes, whereas information is broader.
- While there is a technical difference between ‘data’ and ‘information’, people use both words interchangeably.
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’.
Don’t use terms like ‘citizen’, ‘consumer’ and ‘user’ – our research suggested people much prefer the term ‘patient’.
Use data as a singular rather than plural. Even if plural is more accurate, most people now rarely say ‘data are…’.
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 end up with a term such as ‘anonymised personal information’.
Purposes for using data
‘Individual care’ works best to describe the use of data for a person’s own care and treatment.
The commonly used term ‘Direct care’ means nothing to anyone outside professional circles: people felt it sounded ‘ominous’, and conjured up images of an insurance company or credit cards.
The word ‘care’ works better than ‘treatment’ because it is broader.
‘Improving health, care and services through research and planning’ is the best phrase to use to describe the additional ‘purposes beyond direct care’ for which data may be used.
Although it is a long phrase, it helped give a sense of ‘the greater good’ and people wanted the specific detail to help understanding.
- This phrase ensures that there are ‘no surprises’ for people. All of the examples we trialled, including commercial access, academic research and NHS service improvements, were felt to fall under this umbrella term.
Phrases like ‘direct care’, ‘secondary uses’ and ‘purposes beyond direct care’ should only be used in technical conversations between professionals, rather than with the public and patients.
Don’t use ‘planning’ on its own. People thought it sounded like town planning or architecture or, in the context of the NHS, hospital closures.
Levels of identifiability
Many people express concerns that they might be identified when data is used. The technical language of identifiability is complex. If you need to talk about whether someone could be identified from the data, we found that using images is the best way to help explain the concepts:
‘Identifiability spectrum’ by Understanding Patient Data can be reused under the CC-BY licence.
Other hints and tips
Try to be clear about how much and what kind of data is used where possible. If you talk about ‘medical records’ people often envisage their entire medical record being passed on. Usually, only a subset of information contained within a record is used, such demographic information combined with diagnostic details.
Be careful with the phrase ‘data sharing’. It raises concerns that data is being openly released, rather than being used for a specific purpose with controls. A ‘data use contract’ may be more meaningful than a ‘data sharing agreement’.
- 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’.
This data glossary, produced by Connected Health Cities, also clarifies other technical terms around patient data.
These findings are based on research commissioned by Understanding Patient Data. Read our blog on the research and key findings. We asked 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? They 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.