Guidance

UK NSC informed choice principles

Updated 10 December 2024

This publication sets out the UK National Screening Committee (UK NSC) principles for informed choice in screening programmes and describes best practice for the application of these principles in nationally managed and delivered screening programmes.

These principles apply to information produced for the public and for health professionals supporting individuals to make choices about screening programmes recommended by the UK NSC.

A 4-country UK NSC public information task and finish group carried out a review of relevant literature around informed choice in screening published between 2011 and 2018. This publication is now updated following a review of relevant literature relating to informed choice in screening which covered studies published between 2018 and 2023.

Organisational and governance arrangements for national screening programmes differ between the 4 UK countries and this publication has been developed in that context. It is acknowledged that resource variations across the 4 UK countries can impact on information developments.

UK NSC informed choice principles

Principle 1: personal informed choice

All UK NSC approved screening programmes should aim to facilitate a personal informed choice for people offered screening. This is the overarching and guiding principle.

The UK NSC definition of a personal informed choice is:

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
• testing process
• potential benefits, harms, limitations and uncertainties
• potential outcomes and ensuing decisions

The inclusion of the word ‘personal’ emphasises that all programmes should seek to ensure that a decision to have screening or not is the right one for the individual and fits with their values and circumstances. Screening information should be produced with this in mind.

As well as having access to information, people offered screening must have the opportunity to discuss their screening options with an appropriately trained healthcare professional.

Evidence suggests that the factors that may influence a person’s decision include their feelings, beliefs, values and previous experiences of screening and healthcare. For many people, their family circumstances and the views of their family and partner are also important factors.

Principle 2: evidence-based information

Information provided to facilitate a personal informed choice should be accurate and evidence-based, covering the:

• condition being screened for
• testing process
• potential benefits, harms, limitations and uncertainties of the screening programme
• potential outcomes of screening and any further decisions that may need to be made

Principle 3: timeliness of information

A person should have the opportunity and time to reflect on what the test and its results might mean to them and their family.  

Principle 4: opportunity for discussion

As well as having access to information, people offered screening must be able to discuss their screening options with an appropriately trained healthcare professional. This may require access to appropriate communication support such as an interpreter or a hearing loop system.

Principle 5: respect for choice

An individual’s choice to accept or decline the offer of screening will be equally respected.

Principle 6: accessible to everyone

Information developers and providers must ensure that information is accessible and understandable and provide alternative formats and communication support to facilitate personal informed choice for an individual.

Principle 7: user involvement

The development and testing of information for screening programmes should aim to involve a representative cross-section of users (potential and actual) and perspectives to ensure it meets their needs.

Principle 8: consistency of information

Information about UK NSC recommended screening programmes should be consistent across all areas the programmes are delivered in, including across the 4 countries in the UK where appropriate.

The UK NSC screening in healthcare manual provides additional information on the principles of informed choice applied in screening programmes.

Guidance for best practice in development and provision of screening information

The following sections outline good practice for developing informed choice resources.

Responsibility for developing screening information materials lies with the relevant NHS teams or commissioners. Materials to support informed choices are more likely to be effective if best practice principles are followed.

It is important that high quality information products are shared across the 4 UK countries to promote best practice, ensure consistency, and avoid unnecessary duplication. Inconsistencies can lead to confusion and problems for members of the public and professionals living or working near or across boundaries.

We know that people have individual preferences about how much information they want about screening. Screening programmes should provide the information most people will need to help them decide whether to accept or decline the offer of screening, without providing so much information that it is difficult to read or process.

People should also be told that more detailed information is available, if they require it, from national websites relating to the NHS screening programmes (for example on NHS.UK and GOV.UK), and other trusted sources such as established charity stakeholders.

Explaining potential results and their implications in a clear, factual, balanced, and accessible way will be crucial as screening tests become more complex in the future (for example, through the potential use of genomic testing). User and stakeholder involvement in the development of screening information is essential.

Public-facing information

Public-facing information should give users and commissioners confidence that screening programmes are adhering to the principle of facilitating personal informed choice and must present an accurate, evidence-based description of the condition being screened for.

Public-facing information to support the programmes should:

• be clear and concise
• include balanced, accurate, evidence-based information on the:
  • condition being screened for
  • potential benefits, harms, limitations and uncertainties of taking the test
  • possible outcomes of screening and the potential next step choices individuals may need to consider
• be available in alternative formats and languages to support accessibility
• be written following the principles of plain English and comply with national accessibility standards, for example NHS England’s accessible information standard or Public Health Scotland’s Accessible information policy, recognising the need to use correct technical and medical terminology
• be supported by any necessary training for providers
• be based on the best available scientific evidence regarding the incidence and prevalence of the condition being screened for and the test performance (including information on sensitivity, specificity, positive and negative predictive values and false positive and false negative results)
• make it clear that accepting or declining screening is a personal choice, and that either choice will be fully respected and supported
• use techniques that are known to aid understanding and engagement, such as providing essential information early within a document or web page, and using images, infographics, animations and videos if appropriate
• be proportionate – initial information should be brief, but more detailed information should be signposted and accessible to those who want it (‘information layering’)
• proactively involve stakeholders in the information development process
• be tested by, and as far as possible be deemed acceptable to, users
• be subject to an agreed process of evaluation and ongoing review

Health-related information may use language and terminology that is unfamiliar to many. The NHS Digital service manual recommends aiming for a reading age of 9 to 11 years old, but a reading age of 11 to 14 is acceptable for more complex information.

Public-facing information that offers screening should cover the entire screening pathway, including possible screening results and details of possible diagnostic tests and treatment choices (including termination of pregnancy where that is relevant to the test).

It is equally important for healthcare professionals to understand the whole pathway to effectively support people considering, and taking part in, screening.

Staff support

Information for professionals should be accessible and appropriate for staff with varying levels of knowledge about screening. It is therefore important that clinicians and providers are involved in its production.

The messaging in professional and public information must be consistent to enable a shared understanding and facilitate informed choice discussions.

Staff involved in screening can access the comprehensive suite of screening e-learning materials available to them, for example on the e-learning for health (e-lfh) website or TURAS learn. Training should cover the communication skills of facilitating and supporting informed choices as well as learning about the conditions and the screening pathways.

To help ensure all information is written clearly, the teams that develop screening information should be experienced in plain English communication and understand how to support health literacy. This may include specific training on running focus groups and/or interviews.

Promoting equity

Each UK country commits to making reasonable provision to meet the needs of those who may face barriers to accessing information. The NHS accessible information standard requires that people who have a disability, impairment or sensory loss receive information about screening in a way they can access and understand. They should also receive any appropriate communication support they need from services.

Information developers should consider other potential barriers to effective communication, including cultural and gender issues, and work with health inequality teams to maximise accessibility of information across all groups.  

Equity in screening includes accommodating potential participants who do not speak or read English. This requires screening service providers to have access to professional interpreting services and provision of high-quality translated information.

Engaging with users

User needs

Establishing user needs is the first step in the process of developing information. Each user need should be defined clearly so that the development process succeeds in producing information that fulfils it. To do this, information developers must consider the perspectives of potential users.

A user need is written in the form of:

• As a… (who is the user?)
• I need to… (what does the user want to do?)
• So that… (why does the user want to do this?)

In relation to screening, an example of a user need could be:

• As a: person being offered a screening test
• I need to: understand the potential benefits and harms of screening for me, including any limitations, uncertainties, potential outcomes, and subsequent decisions
• So that: I can decide whether it is right for me to have the test or not

The Government Digital Service (GDS) has more detailed guidance on user needs.

User testing can also be employed to trial different ways of presenting information, for example, visually communicating information about chance or risk using infographics.

User testing

When developing or reviewing public-facing screening information it can be useful to use focus groups or individual interviews to help ensure the information:

• meets user needs
• is accessible
• is fit for purpose

Staff resources may also benefit from this approach. The use of focus groups and/or interviews should be considered on a case-by-case basis. Influence from users on the final product should be proportionate. A balance needs to be struck between what users want and what information must be provided to support an informed choice. It is important that a range of user views is sought, both from those who have previously accepted screening and those who have not.

User testing should always be carried out for new public-facing information, or for significant changes to existing information. User testing should aim to involve a representative cross-section of users from the eligible screening population.

Face to face user testing involves interviews or focus groups with individuals who represent the eligible screening population. People are given draft information and asked about their understanding, and preferences, regarding its content and presentation.

Surveys may also be used, depending on the publication type. When reviewing an existing publication, an online survey can help generate evidence to inform changes and updates. Information developers should gain initial user feedback on a survey design to ensure it is fit for purpose. Stakeholder groups such as patient organisations and charities may be able to help disseminate surveys.

Research

High quality research evidence must demonstrate that screening for a condition does more good than harm for the UK NSC to make a positive recommendation for a screening programme. Some of this evidence will help underpin the content of the information provided to those who are offered screening.

Additional specific research may be needed before developing public information – for example, research relating to specific requirements of subgroups within the eligible population.

Research may lead to modifications to screening programmes and pathways which will necessitate the updating of public-facing information. Discussions regarding changes should start with information providers in good time to ensure there is consistency between the information provided and the way the programme operates.

Consultations on public-facing screening content

An open consultation may be considered for some major information projects. An online consultation process would generally be the most viable approach. Practical considerations should apply when determining the scope, timescale and accessibility of consultations.

Approval

There should be a formalised and transparent process to agree and sign off new or revised information, confirming it:

• meets both user needs and programme requirements
• aims to support the reduction of inequalities in screening
• is ready for distribution

Publication

Screening programmes should provide information directly to eligible individuals either face to face (during an appointment), digitally, or via postal invitation.

For public information, versions should be available to meet the needs of those with a sensory loss or learning disability. This could include Braille, audio and easy read formats. Screening providers should consider whether they need to provide translations in languages other than English to support equality and equity.

More detailed guidance is available via the NHS  Accessible Information Standard.

Distribution

It is important that:

• service providers know how to access information quickly and easily
• information is provided to people invited to screening in a timely fashion

Each of the 4 UK countries has communication channels to alert service providers to the publication of any new information resource. They should also consider extending such alerts to relevant stakeholder organisations.

Evaluation and review

All new public information materials should be evaluated post-implementation. This evaluation should include user feedback.

Review of existing publications should normally take place every 3 years. In some cases, a shorter timeframe may be required – for example, due to a policy change or following new evidence that impacts on the screening programme.

The evaluation process should check whether the public-facing information has achieved its purpose of encouraging an individual to consider the offer of a screening test and make a personal informed choice to accept or decline. The approach to evaluation should be proportionate but is likely to include a questionnaire for users and providers. This may involve focus groups or seeking feedback from relevant stakeholder organisations.

Background

The 2014 Parliamentary Science and Technology Committee Report on national health screening noted that although national population screening programmes promoted the concept of those eligible making an ‘informed choice’ to enter a programme, the UK NSC did not have a clear definition of ‘informed choice’ that was consistently applied.

The report also expressed concerns about ‘inconsistencies in the method of developing public information, both within and across programmes’ and ‘that there was no mechanism to share best practice across all programmes and that there was no UK-wide oversight of all NHS screening information materials’.

To address these points, a 4-country UK NSC public information task and finish group was established in 2016. The group undertook to agree a definition of ‘informed choice’ to be applied to all screening programmes and to develop guidelines for a process for producing information to share best practice and avoid duplication across the 4 nations. The initial version of this guidance resulting from that agreement was published in 2018. Following an evidence review this guidance was updated in December 2024.

Bibliography

The following provides a list of papers on informed choice in screening, identified via a literature review, which were published between 2018 and 2023.

A total of 33 references were identified as being relevant to the search and these are listed below. These were checked for new or additional information to inform this updated publication.

Beulen L, van den Berg M, Fass, B H W and others. The effect of a decision aid on informed decision-making in the era of non-invasive prenatal testing: a randomised controlled trial. European Journal of Human Genetics (2016): 24, pages 1409-1416.

Bohler F and Garden A. Issues of informed consent for non-specialists conducting colorectal cancer screenings. Journal of Osteopathic Medicine (2023): volume 124 (1), pages 39-42.

Bradley S H, Thompson M J and Nicholson B D. Ensuring informed decision-making for cancer screening. The Journal of the American Board of Family Medicine (2021): 34 (2), pages 435-438.

Cernat A, De Freitas C, Majid U and others. Facilitating informed choice about non-invasive prenatal testing (NIPT): a systematic review and qualitative meta-synthesis of women’s experiences. BMC Pregnancy and Childbirth (2019): pages 19-27.

Digby J, O’Carroll R E, Chambers J A and others. The impact of hypothetical Personalised Risk Information on informed choice and intention to undergo Colorectal Cancer screening colonoscopy in Scotland (PERICCS) - a randomised controlled trial. BMC Medicine (2020): 18, 285.

Douma L N, Uiters E, Verweij M F and others. Autonomous and informed decision-making: The case of colorectal cancer screening. PLOS ONE (2020): 15(5).

Elton L. Non-maleficence and the ethics of consent to cancer screening. Journal of Medical Ethics (2021): 47, pages 510-513.

Essink-Bot M L, Dekker E, Timmermans D R M and others. Knowledge and Informed Decision-Making about Population-Based Colorectal Cancer Screening Participation in Groups with Low and Adequate Health Literacy. Gastroenterology Research and Practice (2016): volume 2016, 8 pages.

Etchegary H, Nicholls S G, Tessier L and others. Consent for newborn screening: parents’ and health-care professionals’ experiences of consent in practice. European Journal of Human Genetics (2016): 24, pages 1530-1534.

Fitzgerald C, Heery E, Conneally N and others. An evaluation of pregnant women’s knowledge and attitudes about newborn bloodspot screening. Midwifery (2017): volume 45, pages 21-27.

Fransen M P, Dekker E, Timmermans D and others. Accessibility of standardized information of a national colorectal cancer screening program for low health literate screening invitees: A mixed method study. Patient Education and Counselling (2017): volume 100, issue 2, pages 327-336.

Gabel P, Larsen M B, Edwards A and others. Effectiveness of a decision aid for colorectal cancer screening on components of informed choice according to educational attainment: A randomised controlled trial. PLOS ONE (2020): 15(11).

Gökce I M, Wang X, Frost J and others. Informed decision making before prostate-specific antigen screening: Initial results using the American Cancer Society (ACS) Decision Aid (DA) among medically underserved men. Cancer (2016): volume 123, issue 4, pages 583-591.

Hitchcock E C and Elliott A M. Shortened consent forms for genome-wide sequencing: parent and provider perspectives. Molecular Genetics and Genomic Medicine (2020): volume 8, issue 7, e1254.

Ilic D, Murphy K, Collins V and others. Coaching to support men in making informed choices about prostate cancer screening: A qualitative study. Patient Education and Counselling (2018): volume 101, Issue 5, pages 872-877.

Jallow M, Bonfield S, Kurtidu C and others. Decision Support Tools for Low-Dose CT Lung Cancer Screening: A Scoping Review of Information Content, Format, and Presentation Methods. Thoracic Oncology: Chest Reviews (2022): volume 162, Issue 4, pages 930-941.

Lewis C, Hill M and Chitty L S. Offering non-invasive prenatal testing as part of routine clinical service. Can high levels of informed choice be maintained? Prenatal Diagnosis (2017): volume 37, issue 11, pages 1130-1137.

Lewis C, Hill M, Skirton H and others. Development and validation of a measure of informed choice for women undergoing non-invasive prenatal testing for aneuploidy. European Journal of Human Genetics (2015): 24, pages 809-816.

Lim K M X, Lewis C, Wong H C and others. Does an educational video for aneuploidy screening improve informed choice among pregnant women? A randomised controlled trial. Prenatal Diagnosis (2022): volume 43, issue 1, pages 42-50.

Martínez-Alonso M, Carles-Lavila M, Pérez-Lacasta MJ and others. Assessment of the effects of decision aids about breast cancer screening: a systematic review and meta-analysis. BMJ Open (2017): 7.

Ormond K E, Borensztein M J, Hallquist M L G and others. Defining the Critical Components of Informed Consent for Genetic Testing. Journal of Personalized Medicine (2021): volume 11(12), article 1304.

Peterson G B, Dahmhus C S, Jønsson A B R and others. The Perception Gap: How the Benefits and Harms of Cervical Cancer Screening Are Understood in Information Material Focusing on Informed Choice. Health, Risk & Society (2020): 22, number 2, pages177–96.

Pickles K, Kazda L, Barratt A and others. Evaluating two decision aids for Australian men supporting informed decisions about prostate cancer screening: A randomised controlled trial. PLOS ONE (2020): 15(1).

Pop-Tudose M E, Popescu-Spineni D, Armean P and others. Attitude, knowledge and informed choice towards prenatal screening for Down Syndrome: a cross-sectional study. BMC Pregnancy and Childbirth (2018): 18, 439.

Reder M, Berens E-M, Spallek J and others. Development of the Informed Choice in Mammography Screening Questionnaire (IMQ): factor structure, reliability, and validity. BMC Psychology (2019): 7, article 17.

Roberto A, Colombo C, Candiani G and others. A dynamic web-based decision aid to improve informed choice in organised breast cancer screening. A pragmatic randomised trial in Italy. British Journal of Cancer (2020): 123, pages 714-721.

Ruparel M, Quaife S, Baldwin D and others. Defining the information needs of lung cancer screening participants: a qualitative study. BMJ Open Respiratory Research (2019): volume 6, issue 1.

Stoll K and Jackson J. Supporting patient autonomy and informed decision-making in prenatal genetic testing. Cold Spring Harbor Perspectives in Medicine (2019).

Vears D F, Borry P, Savulescu J and others. Old Challenges or New Issues? Genetic Health Professionals’ Experiences Obtaining Informed Consent in Diagnostic Genomic Sequencing. AJOB Empirical Bioethics (2021): volume 12(1), pages 12-23.

Wangmar J, Wengström Y, Jervaeus A and others. Decision-making about participation in colorectal cancer screening in Sweden: autonomous, value-dependent but uniformed? Patient Education and Counselling (2021): volume 104, pages 919-926.

Wray, R J, Nicks S, Adsul P and others. Promoting informed prostate cancer screening decision-making for African American men in a community-based setting. Cancer Causes Control (2022): 33, pages 503-514.

Wright S J, Ulph F, Dharni M and others. Eliciting Preferences for Information Provision in Newborn Bloodspot Screening Programs. Value in Health (2017): volume 20, issue 4, pages 651-661.

Zagala A, Bogusz R, Sak J and others. Quality of Informed Consent in Mammography Screening - The Polish Experience. International Journal of Environmental Research and Public Health (2022): 19(11): 6735.