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)
23.
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