https://phescreening.blog.gov.uk/2018/08/12/guidance-on-informed-choice-in-screening/

Guidance on informed choice in screening

Public health consultant Sikha de Souza
Public health consultant Sikha de Souza

The UK National Screening Committee (UK NSC), and the screening community in the UK as a whole, are well aware of the importance of enabling people to make informed decisions about screening.

We know it is not always easy to give people enough information about benefit, harm and risk to weigh up the options, while keeping the information meaningful and understandable!

My name is Sikha de Souza and I am a public health consultant. Last August, I wrote a blog when we launched the consultation on guidance on developing information for the public about screening.

The guidance covers the development, production and review of information to support all UK population screening programmes.

The aim is to ensure all 4 nations in the UK share the same rigorous and transparent approach to developing and maintaining high quality information for the public and professionals.

Right decision for each person

We received lots of helpful comments on the initial draft from a wide range of people and groups, which was great. The comments have helped to shape the final document.

In particular, we are now much clearer on some of the language used, specifically using the term personal choice rather than personalised choice.

Using the word personal was important to everyone. It emphasises the fact that the decision needs to be right for each individual, fitting in with their values and circumstances.

Scales graphic
Screening is a balance of potential benefits and potential harms

The final version of the guidance was presented to the UK NSC earlier in the year. It was well received and the committee thanked everyone for their hard work in producing a UK-wide accepted definition of informed choice and an agreed process for developing public information.

I am really pleased to announce that the final, UK NSC branded guidance has just been published and I would urge you to read it.

However, publishing it is not the end – in fact it is just the beginning. It has been great to see the enthusiasm from the 4 countries about putting this guidance into practice.

We are continuing to work together as a group and are looking for new ways to support the sharing of documents and learning. We aim to make sure that all people invited for screening across the whole of the UK have access to high quality information, based on the best possible evidence, so they can make a personal informed decision about screening.

From a Welsh perspective, I am looking forward to putting the guidance into practice and sharing learning and resources with our colleagues across the UK. This will make sure that all our public information is of the highest possible standard for everyone considering an invitation or using our services.

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6 comments

  1. Comment by Steve posted on

    Uk national screening committee . Male cancers count too Why have you perfected discrimination against men along with the NHS as to why our health is of no importance to you. One man every 45 min dies of prostate cancer. When if its caught early its one of the most treatable. Testical cancer again nothing ever mentioned by you. There is more to cancer than Breast or Cervical

    • Replies to Steve>

      Comment by Anne Mackie posted on

      Thankyou for making contact.
      Population screening programmes are considered by the UK National Screening Committee (NSC). The UK NSC is a group of academics, scientists, doctors, nurses, men, women, lay people and ethicists, amongst others. Screening programmes are only recommended when the research is clear that if such a mass programme were to be implemented people would receive more good than harm. Unfortunately, the test for prostate cancer was never designed to be for prostate cancer and is pretty poor at telling a man whether he has a prostate cancer at all. Even when a cancer is found we know that most will do the man no harm but the treatment (surgery, X rays and hormones) may. As it stands, when we add all the benefits together and then all the harms, the latter are weightier. We are not the only country in the world to take this view. For example, the Americans do not run or recommend a population screening programme. They, like us, have looked at the evidence and concluded that the best we can do for the moment is to give men and their GPs the most up to date information we have in order that they can decide. But, as you say, prostate cancer is very common, so there is a huge amount of research going on to get a more accurate test, and to work out which cancers needs which treatment. Be assured that the UK NSC is very close to the people developing the evidence and will return to review the case for prostate cancer screening as soon as there is evidence to suggest that the time has come to run a full population screening programme.

      • Replies to Anne Mackie>

        Comment by Steve posted on

        Thank you for you reply . But why no screening tho for testical cancer . Like i say our lifes count too ...

        • Replies to Steve>

          Comment by Andrew Anderson posted on

          Hello Steve

          The UK's independent screening committee last reviewed the policy on testicular cancer in 2006 and recommended against screening as this condition is more commonly detected through self-examination. It was found that population screening would not be beneficial.
          This is now an archived condition which can be viewed at https://legacyscreening.phe.org.uk/testicularcancer

          Hope this helps.

  2. Comment by Julie Stein Hodgins posted on

    Clear and easily understood. I'm interested in 2.1 I work in Breast Screening and the .gov website does not have the audio that the original site had. Where can I send clients for professional audio information?