People or patients - not customers, consumers, service users or citizens

[sarawilcox]

Have we any evidence of what people prefer? And in which context? I've put out a call for user research.

[sarawilcox]

We have limited research on this in NHS.UK.

A Twitter poll (https://twitter.com/cjforms/status/1113370623429025792) with around 600 responses (at 5 April) showed that 90% of people prefer 'patient' to 'service user' or 'customer'. Twitter polls are not reliable but the comments are interesting. They include:

• the person's actual name (example: Ben)
• 'person'
• variants reflecting the reality that health affects a person and also their wider network of family ('parent'), carers and so on The comments pointed out things like:
• 'service user' can be better for some contexts such as mental health
• 'customer' can be better for some contexts such as collecting a prescription from a (non-hospital) pharmacy. A lot depends on context.

A YouGov poll on whether people see themselves as 'patient' or 'consumer' in relation to the NHS found that, in the context of a visit to their GP:

• 60% of people see themselves as a 'patient'
• 28% as 'patient and consumer'.

In NHS social care (e.g. a care home):

• 31% see themselves as 'patient'
• 45% as 'patient and consumer'

In relation to hospital treatment:

• 57% as 'patient'
• 31% as 'patient and consumer'

Virtually no one saw themselves solely as a consumer.

[sarawilcox]

Other comments from NHS.UK content designers:

• In pregnancy user research, midwives don't call pregnant women patients. They call them 'women'.
• "We tend to use 'people' rather than 'patients' as it's more personal. But we do use 'patients' in certain contexts ... when the subject is more clinical - for example, on the intensive care page... We also use 'patients' when talking about PALS."
• "Once people are treated, they become patients". We haven't seen any evidence that people who look for and use mental health services see themselves as 'service users'. We use 'people' or 'patients'.

Within social care there is a preference for ‘people who use services’ over ‘service user’. Some people object to the latter because they feel they are being defined by the fact they use services. https://www.thinklocalactpersonal.org.uk/Browse/Informationandadvice/CareandSupportJargonBuster/#People%20who%20use%20services

[sarawilcox]

Some Canadian research found that: Respondents moderately liked the label 'patient'. The other alternatives evoked moderate to strong dislike. https://www.ncbi.nlm.nih.gov/pubmed/16266422

[sarawilcox]

Some research findings and personal views shared via Twitter: https://twitter.com/cjforms/status/1113370623429025792 https://twitter.com/S_Wilcox/status/1114076160286167041

Comments include:

• This depends on circumstances. eh. The pharmacy work we did back at NHS-D wasn't anything like clear on "patients" seeing themselves as that. If they paid for prescriptions there was lean towards "customers".
• It depends on the circumstances. We had this on Co-op pharmacy 'you aren't my doctor so you don't get to call me patient' -In Well Pharmacy, we actively tried to move away from Patient as to Well, they are customers and people saw them selves as customers (even though often they were getting an NHS service). "I'm not your patient" came up often.
• I think @ermlikeyeah mentioned similar findings. Most see themselves as an NHS patient, but a Boots customer if that makes sense.

[sarawilcox]

Draft for May Style Council meeting, based on responses so far:

Entries under people, patient, service user, customer - with a link from you

Generally, we address people as "you".

If we're writing in the third person, we use "people" but this varies depending on the context. People is a broad term which covers patients, carers, their family and friends.

Choose the word that is most appropriate for your context and test it with your specific users. Here are examples of different contexts.

​​When we're talking about people getting treatment in a GP surgery or in hospital, we use "patient". Note, however, that some people don't see themselves as sick or as "patients". Also carers or family members may feel excluded by the word "patient".

In a pharmacy context, we've seen some evidence that people may not see themselves as "patients". Instead, if they pay for prescriptions, they're more likely to see themselves as a "customer". ​

When we're talking about pregnancy, we use 'women'.

The NHS Business Services Authority used "mums" for their 'maternity exemption' certificate service.

Service user

We prefer "people" or "patients" - or in social services "people who use services".

We haven't seen any evidence that people think of themselves as "service users", for example when they're searching for or using mental health services.

[GrilloPress]

In a pharmacy context, we've seen some evidence that people may not see themselves as "patients". Instead, if they pay for prescriptions, they're more likely to see themselves as a "customer". ​

Worth talking to Lucy Winder. In research for the electronic prescription service (EPS) the word pharmacists used was "patient" not customer and people who came in for a prescription said the same

[sarawilcox]

From Lucy Winder: "Yes we referred to people coming into pharmacies to collect prescriptions as patients (and i wasn't corrected) and the pharmacists also referred to them as patients. I don't remember anyone referring them as customers."

Lucy's team is doing more research with pharmacists in May.

[sarawilcox]

Style Council on 5 June agreed a simpler version of the proposed wording to go into the content style guide:

People or patients

Generally, we address people as "you".

If we're writing in the third person, we use "people" but this varies depending on the context. "People" is a broad term which covers patients, carers, their family and friends.

We prefer “people” for content aimed at the general public but we sometimes use “patients” if the word “people” might be confusing, for example, where you need to distinguish patients from the general public. “Patients” may also be more suitable in content for health professionals.

Service user

We prefer "people" or "patients" - or in social services "people who use services".

We haven't seen any evidence that people think of themselves as "service users", for example when they're searching for or using mental health services.

[sarawilcox]

Published

[sarawilcox]

On their page about GP online services, NHS England says: "a large survey showed that people don’t think of themselves as patients, unless they are in a hospital".

[sarawilcox]

There have been a couple of questions about the term "citizens" via email and on the NHS.UK Slack channel. Summarised here:

• Citizen comes up in internal presentations and the name of some NHS programmes (e.g. Citizen Health Tech).
• "We found that the use of ‘citizen’ was not really inclusive and rather charged in today’s post-Brexit climate."
• How do we distinguish people who are patients and people who are eligible to be patients (citizens?).
• "Citizens" can feel loaded and may be off-putting for people who have concerns about nationality, immigration etc.
• Everyone is a "patient" on and off throughout their life - e.g. anyone who's had a COVID-19 vaccination recently (most people) was a patient. However, on nhs.uk we only use the term "patient" in certain contexts such as intensive care because "you" and "people" are usually more appropriate and 'friendlier' terms. I think "citizen" is a strange term to use in a health context and it's not one we'd usually use for nhs.uk content.
• You also don’t need to be a citizen to get NHS care. Just “ordinarily resident”. You’ll get care but may get an invoice later.
• "People" seems too general, "patient" seems a bit specific as it implies some sort of current treatment perhaps. "People" doesn't help us, as we want to contrast with "healthcare workers" and they are people too. Any mileage in Patient/public"?
• A lot of clinical sources that are primarily aimed at healthcare professionals often have a section that's labelled 'patients' or 'patient information' to make it clear which content is for which group.

Some examples from NHS login: "NHS login provides patients with a simple, secure and re-usable way to access multiple digital health and care services."

"NHS login is a service that has been created by the NHS for patients and the public. It provides a re-usable way for patients to access multiple digital health and social care services with a single login, which includes authentication for returning users.

"NHS login can be used by the public to securely access their health and care information wherever they see the NHS login button. People can use NHS login to prove who they are safely and securely and, in most cases, without the need to visit their GP. "

"Patient information on NHS login "Read guidance and supporting information for the public and people who use NHS login."

[agnieszka-murdoch]

In screening, we have had feedback from subject matter experts that 'people' is too broad. The feedback was that screening services are not for everyone (which 'people' implies) - only those who are eligible. So far, we have used 'those who are eligible for screening' in internal content.

The term 'screening participants' has also been used internally although this too is problematic because the content will be aimed at those who are already on their screening journey (so they are a participant) but also those who are due to become eligible (so not participants yet).

In this context, 'patients' does not work either because screening is about checking healthy people and many of them will never need treatment.

It may actually be appropriate to use different terms when talking about each screening service. Cervical, for example, uses 'women and people with a cervix'. Bowel uses 'everyone aged 60 or over'.

In addition to this, we have used 'citizen' in a recent piece of technical guidance aimed at internal NHSD people. We used it in the descriptions of some digital products that will be built as part of the transformation of screening programme. The product names and descriptions had to be written in a way that is flexible enough that it will be possible to apply them beyond the screening programme. For example, a 'citizen communication' tool that will initially be used to communicate with those who are eligible for screening, but in the future may also be used to communicate with anyone using or wanting to use any health service. So, 'screening participants', 'patients' and 'those eligible for screening' were too specific. I can see that 'citizens' can be problematic for some of the reasons mentioned above, though.

Having said that, in any public-facing content about screening, it's likely possible to bypass all this and just address the user with 'you'.