National Health Screening - Science and Technology Committee Contents

Conclusions and recommendations

National health screening in the UK

1.  Health screening policy and practice provokes strong reactions among those who argue that the UK should screen for more conditions and in those who question the operation of, and evidence base for, current programmes. Since its establishment, the UK National Screening Committee has discouraged the haphazard growth of localised, unplanned programmes that are not grounded in high-quality evidence and has presented a barrier to entry. We agree that all screening programmes should be grounded in robust evidence and, given the difficulty of withdrawing a programme, support the idea that the evidential barrier to entry should remain high. (Paragraph 12)

Reviewing the evidence base

2.  We recognise that the devolved nations have power over public health in their respective territories. However, significant amendments to the delivery of screening programmes by a single nation within the UK (in the absence of a formal recommendation from the UK National Screening Committee (UK NSC)) risk undermining the UK NSC's authority as the body advising all four nations on screening policy. It also generates confusion and uncertainty about current best practice. (Paragraph 17)

3.  We welcome the UK National Screening Committee's (UK NSC) decision to ensure that any "big change" to an existing screening programme made by one, or more, of the four nations would now prompt the UK NSC to conduct an evidence review and issue a formal recommendation. We recommend that the UK NSC clarifies in its response to this report what constitutes a "big change" to an existing screening programme that would automatically trigger a UK-wide review and policy recommendation. This information should be made available on the UK NSC's website. (Paragraph 18)

4.  If it is to be effective and trusted, the UK National Screening Committee (UK NSC) must be open to a plurality of perspectives when reviewing the evidence base for its policies. We are satisfied that efforts continue to be made to consult with stakeholders and note that the UK NSC is currently producing updated guidance for stakeholders on "engaging with its policy review process". Engagement, however, should be a two-way process. In addition to being transparent and opening up its policy review process to external input and scrutiny, it is vital that the UK NSC proactively looks beyond traditional, large stakeholder groups and seeks to engage with those smaller—often condition-specific—groups especially where they offer scientific insight. We recommend that the UK National Screening Committee, in its response to this report, details how it will proactively engage with a broader range of stakeholders. (Paragraph 22)

Reporting evidence reviews

5.  We consider the consistent conduct and reporting of systematic reviews to high, well-established standards to be of great importance. We recommend that the UK National Screening Committee (UK NSC) draw on established protocols—such as the "Cochrane Handbook for Systematic Reviews of Interventions"—to standardise the steps within, and the reporting of, each systematic review of a screening programme. (Paragraph 27)

6.  We note that the Independent Review of the UK National Screening Committee (UK NSC) is currently examining if the existing criteria for appraising the viability, effectiveness and appropriateness of a screening programme need strengthening or amending to take into account the complexities arising from genetic screening. It is also important that the Independent Panel considers if the evaluation of evidence against these criteria is conducted in a rigorous, transparent and consistent manner. Since the UK NSC does not use the same external reviewer for each review, and given the potential for differences in interpretation, we consider it essential that the UK NSC publishes clear guidance on how it assesses the evidence base against its criteria. (Paragraph 33)

7.  We recommend that the UK National Screening Committee publish a revised version of its 1998 Handbook to clarify and add detail to how the UK NSC evaluates the evidence base against its twenty-two criteria. This should be made available on its website no later than March 2015. (Paragraph 34)

8.  Any evidence review process must be flexible enough to accommodate the wide range of screening programmes the UK National Screening Committee (UK NSC) examines and some subjective judgements will be made. However, it is currently unclear what procedures the UK NSC has for reaching decisions about whether to recommend a programme. In line with the guidance outlined in the Code of Practice for Scientific Advisory Committees, we recommend that the UK National Screening Committee formally agree, and make public, the procedural mechanism by which it will reach decisions and recommendations. (Paragraph 38)

9.  Interventions that display all the hallmarks of being a systematic, population-based screening programme—like NHS Health Check—should not follow a "different route" bypassing the UK National Screening Committee's (UK NSC) evidence review process. To do so risks undermining the UK NSC's authority and, in the absence of the UK NSC's scrutiny, may give rise to serious questions about the quality of the evidence upon which the programme is based. We agree with the UK NSC Chair and recommend that, in the future, any programme that "looks like" a screening programme, regardless of the label it is given, should be subject to the UK NSC's evidence review process. (Paragraph 44)

10.  We are concerned that there is ambiguity about whether the Government has agreed to the extension of the breast cancer screening programme to cover all women in England aged 47-49 and 71-73. We therefore recommend that, in the Government Response to this report, a clear statement is made about what has, and has not, already been agreed to regarding the extension of the breast cancer screening programme. We ask that this statement also detail the evidential basis for the Government's position. (Paragraph 47)

11.  The risk taken in not ensuring a policy is evidence based is poor policy that does not achieve its intended aims. We have heard from witnesses to this inquiry that the NHS Health Check programme may have suffered in this manner. The programme was introduced without an evidence base demonstrating that it could achieve its aims and we are concerned that it could be, as a result, wasting resources. We therefore recommend that the NHS Health Check programme be scrutinised by the UK National Screening Committee, retrospectively, to ascertain its value. (Paragraph 48)

Communicating the risks and benefits of screening

Informed choice

12.  We support the principle of enabling informed choices to be made about participation in a screening programme. However, we are struck by the lack of clarity over what is meant by "informed choice", how it should be measured and the corresponding dearth of information on whether it is being achieved in practice. We recommend that a definition of "informed choice" is agreed by the UK National Screening Committee, in conjunction with its stakeholders, as soon as possible. The definition should have regard to the legal rights set out in the NHS Constitution, particularly those rights that make reference to consent and informed choice. We also recommend that this definition is subsequently used as a starting point to evaluate, and compare across screening programmes, whether individuals are being supported to make an informed choice about participating. (Paragraph 54)

Producing public information on screening

13.  Although there are differences between the screening programmes, we are concerned about inconsistencies in the method of developing public information, both within and across programmes. Producing accurate, concise and accessible public information on screening will always be challenging. However, we were surprised 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. (Paragraph 61)

14.  We encourage the UK National Screening Committee and NHS to develop, pilot and evaluate approaches to providing screening information that can be accessed at the level of detail desired by individual patients and practitioners. (Paragraph 62)

15.  To avoid inconsistencies in the information provided across programmes, we recommend that the UK National Screening Committee devises and implements a standard process, underpinned by a publicly available set of criteria, for producing information that facilitates an informed choice to be made about participating in a screening programme. The production process should consult with a wide range of stakeholders and should subject information materials to extensive user testing, both before and after implementation. Information materials for all NHS screening programmes should subsequently be revised according to the process and be reviewed at regular intervals. (Paragraph 63)

16.  In the context of breast cancer screening, we have no reason to doubt the detailed work undertaken by the Independent UK Panel on Breast Cancer Screening in 2012. Its report clearly highlights the assumptions made by the Panel when analysing the data, as well as where uncertainties lie in its estimates of benefits and harms. It is, however, vital that any uncertainties are also acknowledged in screening information materials and expressed in a clear, accessible way. We consider that the UK Statistics Authority and its executive office, the Office for National Statistics, have a valuable role to play in ensuring the veracity of the statistics used in screening information materials and the models they are based upon. As the independent body with the statutory objective to promote and safeguard the production of official statistics that serve the public good, we recommend that the Office for National Statistics review and validate the statistics presented in NHS screening information materials. (Paragraph 69)

17.  Under the NHS Constitution, patients have the right to be given information about the test and treatment options available to them, what they involve, and their risks and benefits. We are concerned that the rarity of some conditions may lead health professionals to downplay the possibility of participants in a screening programme receiving a positive result and that health professionals can struggle with screening terminology and concepts. We recommend that the Government supports the UK National Screening Committee to step up its education programme and ensure that all front-line health care professionals delivering screening programmes receive regular training to refresh their communication skills, as well as their understanding of available screening programmes and their associated benefits and risks. (Paragraph 73)

Private health screening

18.  We recommend that the Government clarifies, in its response to this report, where responsibility rests for ensuring that the information materials and advertisements produced by private providers of health screening are held to the same evidential standards as those produced by the NHS and that they enable people to make an informed choice about participating. We also recommend that the bodies regulating the conduct of health professionals, including the General Medical Council and the Nursing and Midwifery Council, review the effectiveness of their processes for ensuring that those operating in the private sector are providing patients with good quality, balanced information. (Paragraph 78)

Innovations in screening

19.  Throughout this inquiry we have heard about the potential benefits, and concerns about the possible harms, arising from participation in a screening programme. The Committee welcomes the current, ongoing research that aims to improve the targeting of screening programmes towards those in higher risk groups. We have previously documented the NHS's resistance to change and therefore consider it imperative that the UK National Screening Committee (UK NSC) and the NHS set out how they will ensure proven developments in screening risk stratification are supported, and where recommended, implemented, as well as how best practice is to be disseminated. We also recommend that the UK NSC is supported by the Department of Health and the Government Office for Science to develop its capacity for "horizon scanning" and to embed it in its operations. (Paragraph 83)

Screening policy and advice

20.  From the evidence we have taken, the UK National Screening Committee (UK NSC) broadly performs the functions of a Scientific Advisory Committee, yet it is not classified as such. A compelling reason for the status quo was not offered. It is of concern to us that the UK NSC Director of Programmes did not know what code of practice the UK NSC worked within. This suggests that the UK NSC's "procedural rules" are not informing its day-to-day work. (Paragraph 90)

21.  The Code of Practice for Scientific Advisory Committees (CoPSAC) reflects the authoritative guidance on providing independent scientific advice to government departments. It was intended to apply to advisory committees regardless of their specific structure and lines of accountability. We are, therefore, at a loss to understand why efforts are apparently underway to develop a distinct code of practice for the UK NSC that "draws on" CoPSAC, rather than adhering to CoPSAC in full. We recommend that the UK National Screening Committee adopts, and adheres to, the Code of Practice for Scientific Advisory Committees in its full and unchanged form. (Paragraph 91)

22.  There is a worrying lack of clarity regarding the relationship between Public Health England and the UK National Screening Committee (UK NSC). It is essential that the two parties formally define their working relationship and identify the safeguards in place to ensure the UK NSC's continuing independence. We recommend that a memorandum of understanding between the UK National Screening Committee and Public Health England is promptly drawn up and placed in the public domain no later than December 2014. (Paragraph 95)


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Prepared 29 October 2014