"Positive" and "negative"

[sarawilcox]

What

It would help if we could add some guidance to the style guide about the word "positive".

Why

See NHSE's blog post on health literacy: https://www.england.nhs.uk/blog/jonathan-berry/: "a lady who thought her “positive” cancer diagnosis was a good thing and couldn’t understand why she wasn’t getting better" Also see Michael's Rosen's story in Word of Mouth: https://www.bbc.co.uk/programmes/m000dpkc Any other evidence that the word causes problems?

[annasutton2]

Another example (admittedly from just one website) but helps illustrate the issue:

From https://www.dignityhealth.org/articles/common-medical-terms-patients-may-not-understand

"Positive and negative If a patient's test results are positive, they may think they are free of the disease or condition being tested for. In 2000, when former New York City Mayor Rudolph Giuliani was told he had a positive prostate biopsy, he thought it meant he was cancer-free. "I keep getting positive and negative mixed up," he said. "I kind of think of negative as bad and positive as good." One context in which a patient may understand the difference between positive and negative is a pregnancy test. Although they may not understand how the result is determined, most patients understand that a positive pregnancy test means the test taker is pregnant, while a negative test means she is not. Similarly, a positive biopsy — as in Mayor Giuliani's case — means cancer cells were detected."

[GrilloPress]

We've seen this in a card sort we did in the NHS App.

We were asking users to rank the importance of messaging from their GP surgery.

We had lots of realistic messages and scenarios including "test results positive" "test results negative" and as expected the users all had different interpretations on whether a test result being positive meant something being positive (good) or positive (you have it).

Even users who said a positive result meant that a test came back that they had something were unsure and found it ambiguous

[sarawilcox]

I'll try and find time to write this up with a proposal for Style Council.

[sarawilcox]

Draft proposal for July Style Council meeting: Positive​ If you're using the word "positive" in the context of a patient's test results, be aware that they may think it means positive news. In other words, they may think they're free of the disease or condition.

[sarawilcox]

At July Style Council meeting:

Agreed to publish the following in the A to Z of NHS health writing.

Positive

If you use the word "positive" in the context of test results, be aware that some users may interpret it as positive news. In other words, they may think they're free of the disease or condition.

If you have to use “positive”, because this is the term people will hear when they get their test results, explain what it means.

Example

"A positive result means it's likely you had coronavirus (COVID-19) when the test was done."

This has been approved by NHS.UK clinicians. Getting ready to publish.

[sarawilcox]

In recent research with a Deaf user who uses BSL, "It's very, very confusing. I see 'positive' and that's good. But 'positive' is actually negative. That's why a good interpreter is really important to make sure that they can explain those difference subtly but clearly."

[mattbancroft23]

I recently did a home Covid test with my 9-year-old son. The tests were negative but he thought that "negative" sounded bad and it meant we both have Covid. A common problem I believe.

[sarawilcox]

In the NHS.UK additional languages discovery, "we heard numerous times that “positive” test results were being misinterpreted as a good result".

[sarawilcox]

Suggested entry for "negative" - to go to Style Council. ​

If you use the word "negative" in the context of test results, be aware that some users may interpret it as bad news. In other words, they may think they have the disease or condition.​

If you have to use "negative", because this is the word people will hear when they get their test results, explain what it means.​

Example: "A negative result means it’s likely you are not infectious."

Example: "Most people will not have HPV (an HPV negative result).​ This means your risk of getting cervical cancer is very low." ​

[sarawilcox]

April Style Council meeting

There was widespread agreement that we should add the word “negative” to the style guide, as some users misunderstand it, for example in the context of test results. It was proposed that we:

• create an entry for “negative” based on our entry for “positive” but turning it around
• add an extra sentence of clarification to the entries on positive and negative

We discussed this entry at some length. I took away an action to try and find some shorter tested examples [but I haven’t been able to find any.]

Proposed amendment to entry on positive: APPROVED

positive

If you use the word "positive" in the context of test results, be aware that some users may interpret it as positive news. In other words, they may think they do not have the condition.

If you have to use "positive", because this is the word people will hear when they get their test results, explain what it means. Positive means the test found what it was looking for.

Example: "A positive result means it's likely you have coronavirus (COVID-19) when the test was done."

Proposed entry for negative - APPROVED

If you use the word "negative" in the context of test results, be aware that some users may interpret it as bad news. In other words, they may think they have the condition.

If you have to use "negative", because this is the word people will hear when they get their test results, explain what it means. Negative means the test did not find what it was looking for.

Example: "Most people will not have HPV (an HPV negative result). This means your risk of getting cervical cancer is very low."

(From our HPV content)

Both entries still need clinical approval.

[sarawilcox]

Approved by clinicians.

[sarawilcox]

Some feedback that the negative example is ambiguous. "We're used to seeing bracketed text as a direct explanation of an acronym so it feels a bit odd!"

Have we got a better example?

[sarawilcox]

We deleted the example of "negative" from the style guide. Needs a better example than the above if anyone has one.