Informed choice
Principles of informed choice applied in screening programmes
Nationally managed and delivered screening programmes are a set of processes aimed at identifying apparently healthy people who may have an increased chance of a condition. The programme identifies eligible people and proactively offers screening to them directly.
Results from screening include the possibility of a false positive or false negative result. This means each individual should be supported to understand what the benefits and risks of screening are and decide for themselves whether to accept or not. We call this making a ‘personal informed choice’.
The UK National Screening Committee (UK NSC) defines a personal informed choice as:
A decision made to accept or decline a screening test based on access to accessible, accurate, evidence-based information covering:
- the condition being screened for
- the testing process
- the risks, limitations, benefits, and uncertainties
- the potential outcomes and ensuing decisions
This definition was developed and agreed following a literature review and work by a UK NSC led public information task and finish group, with representation from all 4 UK countries.
All screening programmes should support personal informed choice and produce screening information with this aim in mind.
The addition of the word ‘personal’ to ‘informed choice’ reflects the importance of potential screening participants being encouraged to consider what is right for them, according to their own unique circumstances. Some screening programmes offer clear benefits of participation (for example early diagnosis, or prevention of disease). Others involve much more complex decisions (for example antenatal screening tests which can lead to difficult personal decisions about whether to continue with or end a pregnancy). Screening information should in all cases make it clear that accepting or declining screening are equally valid choices.
Screening programmes should provide information to individuals at or around the time they are invited to screening. They can then use this to help make a personal informed choice about whether to take up the offer.
Informed choice screening information should cover:
- an explanation of the condition(s) being screened for
- who is invited for the screening test
- what is involved in the screening test
- possible results, including how and when they are provided to the individual
- possible benefits and harms of the screening test, including false positive and false negative results
- a brief explanation of possible further tests in the event screening indicates they are needed (additional detailed information should be provided to those who need further tests)
- information about confidentiality, use of data, and how to opt out (withdraw) from receiving screening invitations
- the importance of people attending follow-up diagnosis and treatment if appropriate
Resources to support informed choice should be made available in a variety of formats to meet the information and communication support needs of individuals, including people with a disability, impairment or sensory loss. The provision of accessible information helps to ensure individuals do not face unnecessary barriers to accessing screening.
Recommended formats include:
- digital content (HTML) – this can be viewed or printed in a large font size, and accessed using a screen reader
- video animations (including subtitles and voiceover translations)
- written translations in other languages
- printable resources for services to provide to people unable to access information online
- picture-based ‘easy guides’ for people with learning disabilities, or for whom English is not their first language
- braille, and audio recordings
We recommend that informed choice screening information should clearly signpost to additional sources of information and support. This should include advising individuals they can speak with a healthcare practitioner if they have any queries or concerns.