Explaining how PHE uses people's data for NHS screening (2024)

https://phescreening.blog.gov.uk/2021/02/05/explaining-how-phe-uses-peoples-data-for-nhs-screening/

Explaining how PHE uses people's data for NHS screening (1)

There has been quite a lot of talk recently about the wider government approach to using data effectively and safely. This work is underpinned by the National Data Strategy (NDS).

Public Health England (PHE) and the NHS need to use people’s personal information in order to provide effective NHS screening services. Data can give us information about:

  • when people should be invited for NHS screening
  • whether NHS screening is working as it should
  • whether people are taking up the offer of NHS screening
  • whether people get seen quickly enough
  • whether a person’s needs are being met (for example if they need wheelchair access to a screening clinic, need an interpreter, or if they need information providing in an easy read format)

It's important the public have trust in the way NHS screening programmes use their data. Not only that, we need to be clear with people about how we use their data for the running of the NHS screening programmes. We have standard wording for this purpose.

But it's not enough to provide information. We need to be sure that it is clear, accessible and as good as it possibly can be.

Focus groups

In December 2020, we ran 2 focus groups about the suitability of our existing Information Governance (IG) wording.

During virtual sessions we gathered feedback from 2 diverse groups on the:

  • explanatory paragraph* we use for screening leaflets and letters, which briefly explains how and why the NHS screening programmes use people’s personal information
  • the longer PHE Screening page on GOV.UK, which gives people a much fuller explanation about the information we use and why, and their options

* Here's the explanatory paragraph we looked at:

The NHS Screening Programmes use your personally identifiable information to ensure you are invited for screening at the right time. Public Health England also uses your information to ensure you receive high quality care. Find out more about how your information is used and protected, and your options.

We also asked for the views of our focus groups more generally on issues relating to the use of their data.

And we asked about how people’s information preferences can be better utilised. For instance, if someone requests information in easy read format from their GP, whether this preference should be shared with other NHS services so that the screening programmes could also provide that person with easy read information by default.

It was a fascinating exercise and we certainly got a lot out of it. We made quite a few changes to both the shorter and longer passages and definitely achieved what we set out to.

Simpler and clearer

Overall, the existing wording evaluated well. People thought it was clear and easy enough to understand.

One participant told us:

You use simple sentences and it is not full of jargon. It’s helpful that you’ve written it in plain English.

Another said:

I thought it was really clear and well written.

Even though some participants thought it was quite long, generally people in both groups thought it was important information that people needed to have available to look at, should they wish.

Following feedback, we changed the short paragraph to add a couple of words to make it clear that people’s personal information comes from their NHS records. Previously, we said:

The NHS Screening Programmes use personal information about you to ensure you are invited for screening at the right time.

People told us they were unclear what we meant by 'personal information' and wanted this clarified. Personal information could mean lots of things.

Following this feedback, we changed the opening line to:

The NHS screening programmes use personal information from your NHS records to invite you for screening at the right time.

This is the version you'll soon see on all our public screening information.

Based on the focus group feedback about our more detailed online information, we made several important changes. We:

  • created a new ‘at a glance’ section summarising the most important information at the top of the longer page, so people will see this first and easily skip to the section they want
  • changed the wording from ‘personally identifiable information’ to ‘personal information’ throughout, as this is shorter and easier to understand
  • made it clear at the top of the page that someone’s data would never be sold or used for marketing
  • made the heading about research clearer by changing it to ‘Using your data for research and your options’
  • made the link to further information on how to opt out of research a lot more obvious
  • brought the ‘keeping information confidential’ section nearer the top to make it more prominent

You can see the newly updated version of Patient confidentiality in NHS population screening programmes.

One of the important messages we received more generally was that people wanted and expected their information preferences to be shared throughout the NHS. One member of the focus groups told us:

It is in your best interest [that screening programmes should know and use people’s information preferences].

Next steps

We have just started going through our online information and leaflets to update the summary paragraph and point people to further information if they want to look into it more.

As always, we'll continue to take on board feedback, comments and review our wording around people's personal information on a regular basis. We'll be sure to blog about any changes we make!

PHE Screening blog

ThePHE Screening blogprovides up to date news from all NHS screening programmes. You canregister to receive updatesdirect to your inbox, so there’s no need to keep checking for new blogs. If you have any questions about this blog article, or about population screening in England, please contact the PHEscreening helpdesk.

Explaining how PHE uses people's data for NHS screening (2024)

FAQs

Explaining how PHE uses people's data for NHS screening? ›

The NHS Screening Programmes use your personally identifiable information to ensure you are invited for screening at the right time. Public Health England also uses your information to ensure you receive high quality care. Find out more about how your information is used and protected, and your options.

How is data used in the NHS? ›

We collect and store some information from people's health and care records so that it can be used to run the health service, manage epidemics, plan for the future and research health conditions, diseases and treatments.

Why is public health screening important? ›

A screening test is done to detect potential health disorders or diseases in people who do not have any symptoms of disease. The goal is early detection and lifestyle changes or surveillance, to reduce the risk of disease, or to detect it early enough to treat it most effectively.

What is the meaning of screening in NHS? ›

Screening is a way of identifying apparently healthy people who may have an increased risk of a particular condition. The NHS offers a range of screening tests to different sections of the population. The aim is to offer screening to the people who are most likely to benefit from it.

What is the meaning of population screening? ›

Screening is the process of identifying apparently healthy people who may have an increased chance of a disease or condition. The screening provider then offers information, further tests and treatment. This is to reduce associated problems or complications.

What are the NHS data tools? ›

Office for Health Improvement and Disparities (OHID)
  • Fingertips (various profiles) ...
  • Atlases of Variation. ...
  • National General Practice Profiles. ...
  • Segment Tool. ...
  • Local Knowledge and Intelligence Service (LKIS) inequalities slides. ...
  • Local Health. ...
  • Strategic Health Asset Planning and Evaluation (SHAPE) ...
  • LG inform.

How is patient data used in healthcare? ›

Identify At-Risk Individuals

For example, health care providers can review data about a patient from health care records, such as an EHR. The data can include information about medications, reported symptoms, medical visits and hospitalizations, providing insights into a patient's health journey and risk factors.

Why is public health data important? ›

Public health needs data to protect people, identify, prevent, and control outbreaks, and save lives, and there are currently limits in what data CDC has, as well as quality and completeness of such data.

What are the examples of screening in public health? ›

Depending on your age, sex, and medical history, you may need to be screened (tested) for things like:
  • Certain types of cancer.
  • High blood pressure or high cholesterol.
  • Diabetes.
  • Osteoporosis (weak bones)
  • STIs (sexually transmitted infections), also called STDs (sexually transmitted diseases)
Mar 1, 2024

What are the three types of screening? ›

Types of screening: Mass screening. Selective or high risk targeted screening. Multiphasic screening.

What is the NHS health check screening program? ›

Benefits of the NHS Health Check

The NHS Health Check aims to lower your risk of getting conditions that affect the heart and blood vessels, such as heart disease, stroke and kidney disease. Many of the warning signs for these conditions, such as high blood pressure and high cholesterol, do not have symptoms.

How many NHS screening Programmes are there? ›

These provide an overview of key performance indicators for all 11 screening programmes.

How do you explain screening? ›

the act or work of a person who screens, as in ascertaining the character and competence of applicants, employees, etc.

What is the meaning of people screening? ›

tests given to people before they are allowed to work for a company, to make certain they can be trusted, have the right personality for the job, etc.: Employee screening may include reference and credit checks, background checks, and physical/drug testing. employee screening services/tests/questionnaires.

What are the benefits of screening programs? ›

The purpose of screening is to identify people in an apparently healthy population who are at higher risk of a health problem or a condition, so that an early treatment or inter- vention can be offered and thereby reduce the incidence and/or mortality of the health problem or condition within the population.

What makes an effective screening program? ›

In an effective screening program, the test must be inexpensive and easy to administer, with minimal discomfort and morbidity to the participant. The results must be reproducible, valid, and able to detect the disease before its critical point.

What is the use of data in hospital? ›

Interpreting data can help us to build our knowledge and to inform research. It can tell us what is happening around us, or around the world, and how it might affect us. We can use the data to plan and evaluate. Researchers use data to understand why something occurs and to find solutions to problems.

How does NHS Digital collect data? ›

General Practice Extraction Service (GPES)

We collect information from GPs across the UK for use in planning, research and generating payments.

Does the NHS have a database? ›

The urgent and emergency care Directory of Services (DoS) is a database of NHS services in England.

How are data sets used in healthcare? ›

We should keep in mind that the purpose of health care data sets is to identify the data elements to be collected for each patient and to provide uniform definitions for common terms.

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