
DETECT CANCER EARLY PROGRAMME
IMPLEMENTATION PLAN
DECEMBER 2011
Contributing to the aim of improving 5 year survival
rates for people in Scotland diagnosed with cancer
Section 1
Introduction
1.1
The Detect Cancer Early Programme
1.1.1
1.1.2
1.1.3
1.1.4
1.1.5
1.2
The Programme Structure
1.2.1
1.2.2
1.2.3
1.2.4
1.2.5
1.2.6
1.2.7
1.2.8
1.2.9
1.3
2.1
Evaluating current awareness of cancer in the general population
2.2
Generic and Tailored Awareness-raising Campaigns
Lung Cancer
Breast Cancer
Colorectal Cancer
Outline methodology, research and evaluation
Primary Care cancer symptom management and referral strategy
3.1
3.2
3.3
3.4
Section 4
Overview of Feedback
Public Awareness and Behaviour Influencing Strategy
2.2.1
2.2.2
2.2.3
2.2.4
Section 3
Programme Board
Key Tasks of the Programme Board
Operational Delivery Group
Clinical Advice
NHS Board Programme Implementation Teams
Programme Design – the Key Aims
Equality Impact Assessment
Programme Governance
Communication Plan
Stakeholder Engagement
1.3.1
Section 2
Rationale for the Programme
Cancer Survival and Mortality in Scotland – Current Performance
Fit with Scottish Government’s Purpose and Strategic Objectives
Fit with the Healthcare Quality Strategy
Cancer Prevention
Referral Profiling
‘Think Cancer’ education and training
Cancer Risk Assessment Referral Aids
Best Practice in open Access Diagnostics
Strategy for Managing Demand for Cancer Screening and Diagnostics
2
Section 5
Performance Management Strategy
5.1
Maintaining current cancer access performance
5.2
Information and data management
5.3
Development of a HEAT Target
5.3.1
5.3.2
5.3.3
5.3.4
5.3.5
5.3.6
5.3.7
5.3.8
5.3.9
5.3.10
What will the HEAT Target be?
How will the target be delivered?
How will the target performance be measured?
What is the baseline for assessing improvement?
How will Stage 1 be defined?
How will the effect of ‘stage unknown’ be managed?
What are the timescales for reporting data and publishing performance?
Will this be a NHSScotland or NHS Board target?
Will the target combine all three tumour types?
Management information indicators of performance
5.4
Potential for including other tumour types within the Programme
5.5
Risks to Delivery
Section 6
Timetable for Key Deliverables
Section 7
Conclusion
Section 8
References and Further Information
3
Detect Cancer Early Programme
Final Implementation Plan
October 2011
Section 1: Introduction
1.1
The Detect Cancer Early Programme
"The 'Detect Cancer Early' initiative will be backed by £30m from the extra £1 billion we
have already committed to the health budget over the next four years.
By raising cancer awareness and significantly increasing diagnostic capacity in the NHS,
we plan to increase by 25% the number of Scots diagnosed in the first stage of cancer. We
will start with the three big cancers - lung cancer, breast cancer and colorectal cancer.
Nicola Sturgeon, Cabinet Secretary for Health and Well-being, SNP Conference
March 2011.
‘A New Front in the Battle against Cancer. Over the last four years the SNP
government has made real progress in cutting cancer waiting times. We will maintain that
progress. However, too often in Scotland cancers are not detected early enough and late
detection means poorer survival rates. We will therefore embark on a Detect Cancer Early
Initiative with a target of increasing the number of cancers detected at the first stage of the
disease by 25%. In the first instance, the Initiative will be directed at lung cancer, breast
cancer and colorectal cancer.
SNP Manifesto, April 2011
There has been much progress in cancer care over the last twenty years in Scotland.
Consecutive national action plans have ensured that screening programmes for breast,
colorectal and cervical cancers have been introduced and cancer diagnoses are made
earlier. There have been spectacular advances in availability of treatments and investment
in staff and equipment has led to shorter waiting times.
NHS Scotland met the 62-day cancer access target in the last quarter of 2008. Better
Cancer Care then introduced tougher targets by including patients referred through the
national screening programmes and establishing a 31-day target from decision-to-treat to
treatment. These targets are due for delivery in December 2011 but are already being met.
4
In April 2011, the Cabinet Secretary announced that the new administration would pursue
a programme to achieve earlier diagnosis of cancer. This programme will support a
fundamentally new approach to the management of cancer in NHS Scotland, promoting
engagement with the Scottish population that embeds mutual partnership, delivers on
quality and efficiency and results in better outcomes. The programme will concentrate on
breast, colorectal and lung cancer in the first instance.
1.1.2 Rationale for the programme
Cancer survival is a key measure of the effectiveness of health care systems. Findings
from one study suggest that for patients diagnosed up to 1999, about 11400 more patients
with cancer died per year within 5 years of diagnosis in Britain than if 5-year survival had
been as high as the levels achieved in the best of the 13 other countries in Europe to
which the British figures were compared1. Breast, colorectal and lung account for about
half of the avoidable deaths. The International Benchmarking Partnership Study is
currently examining differences in cancer survival rates between countries and so far
Module 1 of its work has been published 2. It has compared survival from colorectal, lung,
breast and ovarian cancer in patients diagnosed between 1995 and 2007. Survival has
continued to improve for each cancer in all six countries but generally remains higher in
Australia, Canada and Sweden, intermediate in Norway and lower in Denmark and the UK.
The patterns are consistent with later stage at diagnosis or differences in treatment,
particularly in Denmark and the UK - late-stage diagnosis accounts for most of the
European variation in survival. Elderly people and less affluent groups are particularly
affected by late diagnosis and treatment delays and survival deficit is therefore more
pronounced in these groups. The high rate of avoidable deaths from cancer is due to
people being diagnosed with cancer when their tumour is at a stage when life saving
(usually surgical) treatment will not contain its impact and spread.
The tables below demonstrate the mean survival times for patients diagnosed at the
various stages of cancer and an indication of the availability of the latest staging data
(2009) for the three cancers combined across NHS Boards in Scotland.
The programme also responds to the outputs of a meeting on early diagnosis which was
convened by the Scottish Cancer Taskforce in January 2010 3
5
Table 1: COLORECTAL CANCER
Stage
1
11
years
95%
93%
2
11
years
92%
77%
3
8.7
years
80%
47%
11.0%
26.4%
24.4%
18.3%
2 years
1 year
6
months
-
372
893
827
620
2
13
years
96%
3
4
9 years
2 years
1 year survival (est.)
1
17
years
98%
84%
49%
5 year survival (est.)
97%
81%
55%
24%
Distribution of cases
diagnosed (est.)*
30.8%
42.2%
8.9%
4.0%
Estimate of how long a
stage lasts (in untreated
cases) before
progression to next stage
2 years
1 year
6
months
-
Average no. of cases per
annum
1108
1521
320
144
Mean survival
1 year survival (est.)
5 year survival (est.)
Distribution of cases
diagnosed (est.)*
Estimate of how long a
stage lasts (in untreated
cases) before
progression to next
stage
Average no. of cases per
annum
4
1.4 years
37%
7%
Table 2: BREAST CANCER
Stage
Mean survival
6
Table 3: LUNG CANCER
Stage
Mean survival
1 year survival (est.)
5 year survival (est.)
Distribution of cases
diagnosed (est.)*
Estimate of how long a
stage lasts (in untreated
cases) before
progression to next
stage
Average no. of cases per
annum
1
2
30%
3
2
years
31%
10%
5.9%
8.1%
8 years 4 years
47%
39%
5
5
10
months months months
284
389
4
0.5 years
23%
2%
33.0%
-
1576
*The total distribution does not add up to 100% as there are a proportion of cases where the stage is not known
A recent CRUK Report applauded the progress made in Scotland against its national
cancer plan, Better Cancer Care, but highlighted the lack of emphasis on early diagnosis.
Scottish Government and NHS Scotland aim to address this in the Detect Cancer Early
programme and improve survival outcomes for people with cancer to amongst the best in
Europe. The expected increase in cancer will also be addressed and there will be a
continued drive to improve on the current high quality cancer service provision and patient
and carer experience. Earlier diagnosis will be one route to achieving these aims and will
result in fewer recurrences, improvement in cancer mortality rates and longer term wider
societal benefits.4
1.1.3 Cancer survival and mortality in Scotland – current performance
When compared to other European countries and in particular the Nordic countries, 5-year
survival following a cancer diagnosis is below the average5. When this data is analysed
further it appears that most of the excess mortality occurs in the first year following
diagnosis. Although not shown in the table below, if this cohort is excluded, the difference
in 5-year survival in Scotland compared to the European average is attenuated (to a
variable extent depending on the cancer type). This suggests that excess mortality is due
7
to advanced disease at presentation, although there is also some evidence to suggest that
co-morbidity may also be a factor.
However, some argue that Scotland’s cancer survival data look artificially poor because
cancer registration in many other European countries is organised differently. Record
linkage in Scotland is more complete than in most other countries where death certification
data is not always linked to cancer registration, leading to a falsely high survival figure.
Country
% surviving beyond 5
years
Sweden
58.9
Finland
58.0
Norway
55.0
Germany
53.7
Italy
52.7
EUROPE AVERAGE
52.0
Spain
51.1
Wales
49.2
England
47.2
NI
46.3
Scotland
44.1
Table 4 Percentage 5-yr survival rates for people diagnosed with cancer (all types combined) between 1995-2002 (Eurocare-4)
Notwithstanding the arguments above, if our survival rates matched the best in Europe,
considerably more lives would be saved each year from cancer.
8
In addition, there is expected to be an increase in the incidence of cancer in Scotland as a
result of the ageing population. This means more treatments will need to be given to
maintain the current performance on outcomes. Due to the effect of age-related comorbidity, treating cancer will be more complex. And to monitor for disease recurrence,
treatment toxicity and late effects of therapies, more surveillance will be required.
1.1.4 How does the programme fit with the Scottish Government’s purpose
and five strategic objectives?
This target will make a positive contribution to delivering the following Scottish
Government purpose target

Population – to match average European (EU15) population growth over the
period 2007- 2017 supported by increased healthy life expectancy in Scotland over
this period
and published national outcomes:





we live longer and healthier lives;
we have tackled the significant inequalities in Scottish life;
we have improved the life chances for children, young people and families at risk
we have strong, resilient and supportive communities where people take
responsibility for their own actions and how they affect others;
our public services are high quality, continually improving, efficient and responsive
to local people's needs
By improving the number of people who are aware of symptoms and signs that could
indicate cancer and seek help from a health care professional and by improving on the
numbers of people who participate in the breast and bowel national cancer screening
programmes, the proportion of people with breast, colorectal and lung cancer who are
diagnosed at the earliest stages of the disease will be increased. We know that the earlier
stage at diagnosis and treatment, the better the survival outcomes – there will be fewer
premature deaths from cancer and this will have a positive effect on overall life expectancy
in Scotland.
Mortality rates from cancer in the 10% most deprived areas are around 1.5 times those in
the 10% least deprived areas (Equally Well: Report of the Ministerial Taskforce on Health
Inequalities).6 This target will encourage NHS Boards to scrutinise differences in survival
rates among different groups (gender, race, affluence) and identify those groups where the
most effort at targeted interventions (e.g. to improve uptake of screening) will yield the
biggest impact on target compliance. Examples of such interventions have used
programmes grounded in local communities where people support each other and where
9
people are provided with the information about symptoms that enable them to make the
informed choices about seeking help.
As awareness amongst the public is raised and earlier presentation with suspicious
symptoms and signs is encouraged, NHS primary care and diagnostic services must be
responsive. This programme will promote a high quality, continually improving and efficient
health service, facilitating open access to investigations in primary care and addressing
some of the capacity issues in the system to accommodate the potential increase in
symptom presentations.
1.1.5 How does the programme fit with the Healthcare Quality Strategy?
This programme fully supports all three Quality Ambitions with particular emphasis on the
ambition that the most appropriate treatment, interventions, support and services will be
provided at the right time to everyone who will benefit, and wasteful or harmful variation
will be eradicated.
People will be encouraged to present earlier with symptoms and signs suspicious of
cancer and will be encouraged, through informed consent, to attend national cancer
screening programmes (supports Quality Outcomes 2,3).
Implementation of the programme will demand responsiveness from primary care and
diagnostic services and will require NHS systems to work collaboratively with patients
(supports Quality Outcome 2).
Clear communication of results and shared decision-making on next steps will be
necessary to facilitate timely decisions on, and delivery of, treatments (supports Quality
Outcome 2).
By shifting leftwards the stage at presentation, diagnosis and treatment for cancer, safer,
less complex and less toxic anti-cancer treatment may be possible in some, but not all,
cases (supports Quality Outcome 6).
Surgical interventions will be simpler and will be provided with fewer in patient admissions
and reduced average length of stays (supports Quality Outcome 5), with less exposure to
the risks of HAI (supports Quality Outcome 6).
It is anticipated that a component of the programme will include undertaking primary care
referral behaviour profiling and that this benchmarking will facilitate reflection and action
planning that will reduce variation in referral rates and reduce rates of emergency
10
presentations in people with cancer, the cohort in whom mortality rates are highest
(supports Quality Outcome 3).
It is also anticipated that Detect Cancer Early will expect NHS Boards to develop methods
for empowering patients who may be on a cancer diagnostic pathway (supports Quality
Outcome 2).
1.1.6 Cancer Prevention
We know that, generally, the earlier a cancer is diagnosed the greater the chance it can be
treated successfully. More lives can be saved in Scotland through prevention of cancer
(where possible) and through earlier detection and better treatment.
Factors that influence survival include:
 Tumour biology
 Stage of disease at treatment
 Pre-treatment general physical and psychological well-being
 Quality of care at and immediately after treatment
Although research continues and scientific progress is being made, there are at present
few interventions that can influence the inherent biology and behaviour of tumour cells
which pre-determine an individual’s susceptibility to developing cancer or the
aggressiveness of a particular cancer. However there are important preventative lifestyle
measures that can be taken to reduce the individual’s risk of cancer – these are well
known and effort must continue to promote these amongst the general public. General
physical and psychological well-being and the quality of treatment interventions delivered
are equally important influences but are out with the scope of this target.
Whilst not a specific component of the implementation plan, partnership working will
continue on prevention of cancer. Over half of all cancers could be prevented if people
adopted healthy lifestyles such as:
 Stopping smoking. Over half of all cancers are potentially preventable, with smoking
being the single largest preventable cause of death,
 Avoiding obesity. Obesity is now the most important preventable risk factor for cancer in
non-smokers,
 Eating a healthy diet
 Undertaking a moderate level of physical activity,
 Avoiding too much alcohol
 Avoiding excessive exposure to sunlight
 Avoiding exposure to known carcinogens
11
Health Promoting Health Services: One way of achieving better prevention of cancer is
for hospital services to use opportunities to promote health and well being amongst
patients, their families, visitors and staff. Health improvement messaging and activities
should be part of the day-to-day ethos in hospital services. Every opportunity to promote
behavioural change especially among those most at risk needs to be grasped – for
everyone but particularly for those attending cancer screening programmes, diagnostic
investigations and treatment and follow-up clinics.
1.2
The Programme Structure
1.2.1 Programme Board
The membership of the National Cancer Waiting Times Delivery Group will be reviewed to
ensure fitness for purpose for taking forward the implementation and delivery of the
proposed new cancer target. The refreshed group will be named the Detect Cancer Early
Programme Board (DCEPB) and will be the consultation forum with the Service to ensure
implementation of the new cancer targets to be delivered by 2015. The group will be
underpinned by an operational delivery team and will take forward data and definitional
issues and performance monitoring and support.
The chair of the national steering group will be a NHS Board CEO. Membership of the
DCEPB will include the following:-
Core Membership














NHS Board Chief Executive
Consultant in Public Health Medicine
DCE Programme Director
Cancer Performance Support Team
Chief Medical Officer (CMO)Directorate
CMO Directorate: Public Health Division, Health Protection Branch,
Screening/National Specialist Services (NSS) Screening
Health and Healthcare Improvement Directorate
Scottish Government Analytical Services Division
NSS Information Services Division
Regional Cancer Network Manager
Regional Cancer Network Clinical Leads
Scottish Primary Care Cancer Group
Managed Diagnostics and Imaging Clinical Network
Scottish Cancer Coalition/ Patient/Public representation
12
Non-core Membership (as required)





Marketing
Chief Pharmacist Office
Finance
Equality and Diversity
Communications Advisor
The Programme Board will discuss and finalise membership at its first meeting.
1.2.2 Key tasks of the Programme Board
The remit of the Detect Cancer Early Programme Board will be to provide leadership, coordination and support for initiatives that improve awareness and promote earlier diagnosis
of cancer in Scotland, to oversee baseline assessment and implementation of actions that
secure delivery of the aims and objectives of the Detect Cancer Early Programme and to
monitor progress against delivery.
1.2.3 Operational Delivery SubGroup
The operational subgroup of the DCE Programme Board will comprise the following
membership:








DCE Programme Director (Chair)
Programme Manager QuEST
Regional Network Manager
National Screening Programmes Coordinator
Scottish Primary Care Cancer Group
Regional Cancer Network Clinical Lead
NHS Board Cancer Services Manager(s)
Public Health Consultant
NSS ISD
This list is not exhaustive and will be finalised by the Programme Board
13
1.2.4 Clinical Advice
In addition to the clinician membership of the Programme Board and operational subgroup,
there will be a need for regular dialogue with the clinical community around the public
health, diagnostics and tumour specific components of the programme. It is expected that
the Regional Cancer Network clinical leads will be able to access valuable advice and
support needed for this from the tumour specific network groups. The Diagnostic Steering
Group and the Managed Diagnostic Imaging Clinical Network will be able to provide advice
to the programme on the impact on diagnostic services.
1.2.5 NHS Board Programme Teams
NHS Boards will nominate an Executive Cancer Lead to be responsible for cancer target
compliance and to be the NHS Board point of contact for all Programme Board and
Operational Delivery Group communication.
It is anticipated that territorial NHS Boards will appoint local implementation teams to
oversee the progress required to achieve the aims of the programme and to deliver
performance against the national target.
1.2.6 Programme Design – the Key Aims and Objectives
The programme’s key aim is:
Overall 5 year survival for people in Scotland diagnosed with cancer will
improve
The following objectives will contribute to the aim of the programme:

To increase the proportion of people with stage 1 disease at diagnosis (as a proxy
indicator of survival outcome) and to use performance against a HEAT Target as a
lever for whole systems approach to improvement

To improve informed consent and participation in national cancer screening
programmes to help detect cancer earlier and improve survival rates

To raise the public’s awareness of the national cancer screening programmes and
also the early signs and symptoms of cancer to encourage them to seek help earlier
14

To work with GPs to promote referral or investigation at the earliest reasonable
opportunity for patients who may be showing a suspicion of cancer whilst making
the most efficient use of NHS resources and avoiding adverse impact on access

To ensure there is sufficient capacity in the screening programmes to meet the
expected increase in those choosing to take part

To ensure that imaging, diagnostic departments and treatment centres are
prepared for an increase in the number of patients with early disease requiring
treatment

To strengthen data collection and performance reporting within NHSScotland to
ensure progress continues to be made on improving cancer diagnosis, treatment,
referral and survival.
 To facilitate further evaluation of the impact of public awareness campaigns on the
stage of cancer at presentation and to contribute to research that establishes
evidence for the link between late presentation and survival deficit
1.2.7 Equality Impact Assessment
An equality impact assessment has been conducted as a component of this
implementation plan. Mortality rates from cancer in the most deprived 10% areas are
around 1.5 times those in the least deprived 10% areas (Equally Well: Report of the
Ministerial Taskforce on Health Inequalities). This target will encourage NHS Boards to
scrutinise differences in survival rates among different social groups (race, culture,
affluence) and identify those which groups where the most effort at targeted interventions
(e.g. to improve uptake of screening) will yield the biggest impact on target compliance.
Examples of such interventions have used programmes grounded in local communities
where people support each other and where people are provided with the information
about symptoms that enable them to make the correct choices about seeking help.
In terms of numbers affected, the programme should have a greater impact on older
people as they are more likely to be diagnosed with cancer than those who are younger
(with the highest rates for males aged 75 and above). The evidence also shows that
people living in deprived areas are more likely to develop lung cancer so any programme
seeking to improve earlier diagnosis rates for this disease may have a particularly
beneficial impact on this group. Whilst bowel and breast cancers do not appear to be more
prevalent in deprived areas, their late diagnosis is understood to be more common. Again,
early detection could therefore be particularly valuable for people living in deprived areas.
15
Gender
Disability
Ethnicity
Religion
LGB
Age
SocioEconomic/lowest
-income (L3)
Workforce
No variable impacts on NHS workforce, by equality group, is envisaged as a result of
impacts
this initiative.
Service user Males are
Not
Not
Not
Not
Older
Due to higher
impacts
less likely to Known
Known
Known
Known people are smoking rates
have cancer
more likely people in
diagnosed
to get
deprived areas
at an early
cancer
are more likely
stage than
than
to get lung
females.
younger
cancer and will
This
people. As benefit more
initiative will
such they
from improved
identify
are likely to early diagnosis.
which
benefit
Whilst colorectal
groups
more from and breast
should be
higher
cancer isn’t
targeted (for
rates of
more prevalent
example
early
in deprived
through the
diagnosis
areas, late
Bowel
diagnosis is
Screening
more common.
Programme)
to avoid
widening
gaps that
exist.
1.2.8 Programme Governance
The Detect Cancer Early Programme Board will be managed via the Health Workforce and
Performance Directorate, St Andrew’s House. The Group will be the consultation forum with
the Service to ensure implementation of the programme and delivery against the related
HEAT target to be achieved by 2015. An NHS Board CEO will chair the group. To establish
the programme, the Group will meet bi-monthly in the first instance, then quarterly. To
ensure linkages to the emerging SCTF work plan and Quality Strategy, the Programme
Director will provide quarterly updates to these stakeholders. The Programme Board will
minute meetings and report on progress to Health and Social Care Management Board, the
Scottish Cancer Taskforce, the Quality Alliance Board and the Efficiency and Productivity
Portfolio Office. The group will be underpinned by an Operational Delivery SubGroup
chaired by the Programme Director – Detect Cancer Early Programme.
16
The Scottish Government’s role is to provide clear, appropriate guidance to NHS Boards to
enable them to consistently deliver on the aims and objectives of this programme. This
will be achieved through the national programme board, supporting a network of clinical
stakeholders and NHS Board representatives and guidance will be developed and
approved prior to distribution to all the boards.
Health and Social Care
Management Board
Health and Healthcare
Planning Directorate
Health Performance and
Workforce Directorate
Scottish Cancer Taskforce
DCE Programme Board
DCE Operational Subgroup
The above diagram demonstrates the relationships with the Scottish Cancer Taskforce
and other Scottish Government groups.
1.2.9 Communication Plan
An effective communications function is fundamental to the success of any project,
ensuring that both internal and external partners understand its purpose and values, what
it represents, and what direction it intends to take. It also plays a valuable part in building a
project’s reputation. This plan recognises the importance of making communication an
integral and interdependent part of the Detect Cancer Early Programme. It will enable the
Programme Board to communicate with key partners/groups, and provide information that
is focussed, timeous, and relevant to the target audience.
17
The aim of the communication plan will be to ensure that a meaningful, consistent, two
way dialogue exists between the programme and its internal (Scottish Government) and
external (NHS, third sector) partners and that a positive image of the Detect Cancer Early
programme is projected.
During the implementation of Detect Cancer Early the programme team will:1.
2.
3.
4.
5.
6.
7.
8.
Identify key partners/groups in each NHS Board
Identify appropriate communication channels with key partners/groups
Develop communication tools for reaching key partners/group
Develop a comprehensive communication strategy which covers National, Regional
and Internal organisations/groups
Encourage development of a local communication strategy in each NHS Board area
Act as a channel for other organisations and professional networks/groups to
communicate through
Continually monitor its communications with key partners/groups
Make use of the following methods: launches, newsletters, Scottish Cancer Taskforce
Website, e-mail, mailshots, presentations, conferences, personal contact, events,
leaflets and briefings.
1.3.
Stakeholder Engagement
1.3.1 Overview of Feedback
A stakeholder engagement process was undertaken during August 2011. The draft
implementation plan was widely circulated within Scottish Government Health
Directorates, NHS groups (Public Health, screening, hospital and primary care services),
third sector representatives (principally cancer charities) and medical, nursing and AHP
colleges to seek views on the strategic direction and implementation of the programme.
Feedback was overwhelmingly supportive, endorsing the overall aims and objectives of
the plan. There were various suggestions for further improvements, comments on some of
the detail around implementation and offers of support to take forward the various
components. But the programme was generally considered to be very ambitious and
challenging to deliver – the effort required from all sections of the NHS in partnership with
the public to deliver the programme was recognised.
This final implementation plan takes account of the feedback and where possible
incorporates the suggestions made. The following section identifies the main themes from
the feedback and how comments have influenced the final plan.
18
(a) Governance and programme board structure needs to reflect the ambitious and
challenging nature of the initiative.
There were various offers of practical support and input, in particular from the third sector.
These offers included support with raising and assessment of awareness amongst
members of the general public and health professionals of the symptoms and signs of
cancer and the national cancer screening programmes. These offers of support will be vital
in the development of awareness messaging over the following months.
The DCE Programme Board and the subgroup structure and composition will be a main
item for discussion at the first meeting of the Programme Board. The feedback of
suggestions for membership that reflect the diversity of the programme’s aims will inform
this discussion.
(b) Cancer prevention messages should be strengthened in parallel with the
programme’s drive towards earlier detection
Messages about prevention and about awareness need to be clear, consistent and aligned
and consideration should be given to utilising existing NHS resources, other than those
already identified in the draft plan (e.g. NHSinform, NHS24) and the third sector offers to
promote these messages.
There was clear feedback that strengthening prevention initiatives will also have an impact
on stage of diagnosis but that this was likely to be more long term than the planned
timescales for this programme. The legacy from the programme should be considered at
an early stage, particularly around sustaining public awareness of symptoms and signs
and of the value of participating in cancer screening programmes – the importance of
promoting prevention and awareness messages in schools was highlighted in order to
continue the aims of the programme into future generations.
(c) Effort should be heavily weighted towards targeting hard-to-reach groups and
those in whom late presentation and poor screening uptake is particularly prevalent
– generic campaigns must not widen gaps that already exist
This was a key point in the feedback, raised by a number of respondents. There were calls
for partnership working with education and social care agencies to use mechanisms
already in place that would specifically target those areas where gaps already existed.
Differences in literacy levels will be acknowledged in the campaigns. Examples were
provided of good practice already taking place in Scotland and these projects will help
inform the operational implementation of the programme. Some respondents went as far
as to suggest that a differential target should be applied to drive application of initiatives
19
amongst hard-to-reach groups and less affluent areas or that the GP Contract could be
used to reduce inequalities – but overall the programme should target the ‘unworried high
risk’ groups and not result in more ‘worried well’
Increasing cancer screening programme uptake rather than symptoms awareness
campaigns were argued by some as likely to be more productive. There were different
opinions on whether awareness campaigns are likely to have the desired effect of reducing
the stage at presentation and diagnosis.
Clarity in the implementation plan was sought around responsibilities for delivering the
messages about screening and awareness
(d) Campaigns and initiatives should be evidence-based and lessons learned in
other areas (in particular NAEDI) should influence the Scottish programme
This programme has been built upon evidence that was presented in papers which were
included in an awareness and early diagnosis supplement of the British Journal of Cancer.
The references are included in a section at the end of this plan along with additional
papers on improving cancer survival included in a Kings Fund Report published in June
2011.
The learning identified from the NAEDI initiative in England will be used extensively to
inform the Scottish programme – the Detect Cancer Early Programme will acknowledge
the ambitions of the Quality Strategy and the Efficiency and Productivity Framework for
NHS Scotland to ensure that the funding is invested in proven, effective schemes based
on what has worked in comparable areas in the UK and abroad.
But there are examples of research and initiatives which have already taken place within a
Scottish context and there is much work which has been funded by the third sector and
which will influence the DCE Programme. Examples include research from the Centre of
Academic Primary Care in Aberdeen on influencing high risk people to present early with
symptoms8, research to inform the ‘TLC’ Campaign by Breakthrough Breast Cancer9 and
the Big Lottery Funded West of Scotland oral and bowel cancer awareness campaigns 10.
Robust academic evaluation should be an essential element of the programme and it is
recommended that there will be opportunities for further research that establishes
evidence for the link between late presentation and survival deficit.
A few respondents suggested that further evidence gathering should be sought prior to the
formal launch of the programme but given the data comparisons and progress already
underway in other countries, the arguments against this are compelling.
20
(e) Data should be unambiguous and effort made to achieve more timely publication
in order that the impact of the various elements of the programme can be assessed.
Feedback from the draft plan commented on the challenges of comparing Scottish survival
data to other European countries but there was agreement that stage of disease is a better
indicator than 5 year survival due to length of lead time bias.
Data reporting and collation will require adequate resource and should at least appear as a
risk. The feedback indicated that the programme should not adversely affect the work
being taken forward by the National Cancer Quality Steering Group QPI programme.
Options for achieving a reduction in lag time to publication of staging data should be
explored including the use of existing waiting times tracker systems for recording stage
obtained at MDT discussion.
When the programme board and operational group discuss data collection and reporting
they should consider including 1 year survival data as an indicator of the success of the
programme although it is accepted that the programme will have a focus on improving
stage of diagnosis.
(f) The plan should be clear about the potential for conflict that a focus on primary
care referral practice and open access to diagnostics may have on efficient use of
NHS resources.
Information on routes to diagnosis should be considered a key deliverable of the
programme as reductions in emergency presentations are expected to be indicative of
earlier stage presentation. The focus on encouraging earlier referral should be reflected in
proxy data including screening uptake per practice and comparisons of urgent referral,
imaging investigation usage, emergency presentation and positive diagnosis rates with
more detailed analysis of imaging and referral rates compared to detection rates and
outcome by deprivation category. Although reduction in variation across practices, CHPs
or NHS Boards should be pursued, some comments suggested that identifying and
encouraging a shift towards best quartile practice might be preferable. There may be
opportunities for research into early diagnosis within this component of the work.
It was considered important that work on referral behaviour should be seen as constructive
rather than critical and be used to identify symptoms and signs that would inform updated
clear, accessible and evidence-based referral guidelines and promote best practice.
Constructive referral profiling would then identify where educational initiatives may be
applied.
21
(g) Predictions about the impact on diagnostics, treatments and workforce should
be flagged and assurances provided how the available funding streams have been
calculated and allocated
In view of the potential considerable impact upon diagnostics, it was argued that the
imaging network in particular should be represented on the Programme Board.
Accurate demand modelling will inform costs of diagnostics and respondents requested
that there is transparency about calculations and funding allocations. Capacity planning,
particularly in areas such as colonoscopy should be facilitated so that there is no adverse
impact on other patient groups – the contribution of timely surveillance in bowel cancer
detection was particularly highlighted.
The unintended effects of open access diagnostics were flagged in feedback – that the
likelihood of finding other conditions requiring treatment would need planned for and that
increased imaging rates would also identify more people with later stage disease, which
risks negating the aim of the programme to increase proportions of those presenting with
early stage disease.
Role development opportunities should be highlighted as a potential contributor to
workforce solutions.
(h) Strong messages about the inclusion of other tumour types were highlighted in
the feedback, not only from pressure groups with an obvious interest.
As anticipated there were calls from individual tumour type clinician and third sector
groups about including other cancer types and children and young adults within the
initiative. Some of these groups provided evidence for their requests and others provided
practical examples of how awareness could be raised or what could be used to result in
earlier presentation. There were similar calls from groups and individuals who declared no
tumour specific interest. However, there was also recognition that the programme should
start with tumour groups where there is likely to be more impact and learning what was
useful and what should be avoided, before rolling out to other tumour groups.
Some questions were raised about the impact and potential for improvement in lung and
breast cancer.
(i) Acknowledgement that the programme must adopt a whole systems approach
that will require input from or impact upon large sections of the NHS
Some of the feedback was used to flag that insufficient emphasis was being placed on this
programme involving work across traditional health sector boundaries using a whole
22
systems approach and that potential existed for using various professional groups to
contribute to the programme – community pharmacists were particularly highlighted.
There was also a view that much of the gain from the programme relies upon changing
behaviour amongst the general public.
(j) The HEAT target should be clearly defined (including rationale) and caution was
expressed about the potential impact on current performance against cancer access
targets.
A separate exercise had been undertaken in parallel with this stakeholder engagement by
Scottish Government Health Directorates seeking feedback on proposed HEAT Targets.
Some of the comments and suggestions received have informed this plan.
Views were expressed about the value of having a HEAT Target attached to the Detect
Cancer Early Programme – that it was likely to catalyse change. Suggestions were also
made about the detail of the HEAT target and some of the suggestions have been
incorporated in the description of the target which is included in this plan.
The role of Cancer Networks in performance management should be acknowledged in the
implementation plan
(k) The risks of the programme should be expanded to incorporate various issues
that were identified in the feedback
The issues identified include the following: Acknowledge the importance of other influences on survival including the impact of
co-morbidities
 Some cancers are asymptomatic until later stages and it may be difficult to promote
a shift to early stage if there is a general increase in all stage presentations – how
will people with early stage disease (where no screening programmes exist) know
to present if they have no symptoms?
 There are risks of over-investigation and over-diagnosis but benefits are expected
to exceed the harms
 The other elements of the Scottish Cancer Taskforce work plan need to be
acknowledged in the documents – in particular there will be a need for readiness for
late effects of treatment, surveillance, information and support
 Effect of current and future public service finance is a risk to the sustainability of
the programme
23
Where possible, the comments and suggestions summarised in the section above have
shaped or been incorporated into this implementation plan. The Scottish Government
acknowledges the advice and support of all those who contributed to the stakeholder
engagement process.
Section 2: Public Awareness and Behaviour Influencing Strategy
2.1
Evaluating current population cancer awareness
Core messages aimed at the general public and messages aimed at health professionals
will be developed to influence public behaviour. In order to do this evaluation of current
awareness amongst the population will be required, both before and after the programme.
The impact of awareness raising messages will be assessed by robust evaluation before
and after campaigns are run.
Information gained from conducting face-to-face and telephone interviews will be useful
(e.g. assessment of awareness of warning symptoms and signs, awareness of the most
prevalent cancers, awareness of risk factors, how likely to seek advice etc) but there is a
question around how likely this is to differ significantly from what has already been
obtained from work carried out in areas of the UK - it may be more productive to use the
conclusions and apply to the Scottish context. Learning from NAEDI will be particularly
important for this element of the programme, but it will be vital to ensure that relations are
built with colleagues from all parts of the UK to ensure that best practice is applied and
that funding is not spent in areas where no benefit has been demonstrated. From this type
of work, population profiling can be undertaken (e.g. GP avoiders, low awareness,
emotional barriers, low awareness of screening opportunities etc) and social marketing
options explored and piloted to address the various types.
Consideration will be given to taking forward the research and evaluation component of
the programme in partnership with an academic institution.
This will be a behaviour change approach to encourage early presentation and diagnosis.
Social marketing will be integral to indentifying and addressing barriers to the target
populations in seeking help early, raising awareness of symptoms and signs that could
indicate cancer and improving informed consent and participation in screening
programmes. These barriers are expected to be mainly emotional/perceptions based on
attitudes to cancer but SGHD social marketing team will undertake full insight gathering
and segmentation to identify and prioritise which audiences and attitudes have most
potential to be shifted by communications (or other interventions).
24
Research in England shows that the barriers related to help seeking behaviour and delay
in early presentation are multi-faceted relating to emotional and psychological barriers in
addition to a lack of knowledge of the signs, symptoms and seriousness or significance of
bodily changes.
Insight gathering has been undertaken previously for the National Awareness and Early
Diagnosis Initiative for England (NAEDI) split by socio-economic group, age and gender, to
inform development of DH’s cancer marketing campaign. Further insight gathering is
proposed to qualify how this applies to the Scottish context and will aim to explore the
barriers to early presentation, test NAEDI campaigns, understand the role of influencers in
motivating people to present to their GP and the differences in response across and
between population groups.
It is proposed that Scottish Government research will consider the following potential
approaches:
1. An overarching campaign to address ‘being in control’, motivation to seek early
diagnosis and to increase empowerment about treatment of cancer and survivorship. This
would cover the three cancer topics and would need to include some reference to
identifying signs and symptoms or direct to a source of info e.g. leaflets/online.
2. A symptom / early identification approach split by each cancer topic; or
3. A screening uptake only approach to encourage informed consent and participation in
screening programmes.
In this way research will be used to inform the direction of the campaign strategy and
determine the most motivating messages / way of communicating including exploring
message framing and anchoring.
Insight gathering will also look at for example, awareness of signs and symptoms relating
to specific cancers which can be applied to the relevant campaigns for breast, lung and
colorectal cancer.
Quantitative research can then be used to validate these insights and to produce a
segmentation which will size the market and identify which audiences and attitudes have
most potential to be shifted by communications (or other interventions). A full research
brief will be drafted and shared with the Programme Board.
The following marketing objectives are currently proposed but will be refined following
insight gathering:
25




2.2
Increase understanding and belief that early detection of cancer can save lives
Overcome emotional and psychological barriers to presenting with early symptoms
and seeking help
Increase awareness of the signs of each cancer and their symptoms (and how and
from whom to seek help)
Overcome emotional and psychological barriers and encourage public to participate
in national screening programmes
Generic and tailored awareness raising
It is envisaged that activity might be phased as follows:
Activity
Insight gathering and strategic
recommendations
Campaign development and testing
Production
Overarching empowerment campaign
Tumour specific campaigns in the following
order
 Breast
 Lung
 Colorectal
Indicative timescales
By October/November 2011
By December 2011
January 2012
February/March 2012
Complete by December 2015
There is a clear link to other Scottish Government Health Improvement Social Marketing
Strategy (HISMS) topics as over half of all cancers could be prevented if people adopted
healthier lifestyles such as stopping smoking (smoking is the single largest preventable
cause of death), avoiding obesity (the most important preventable risk factor in nonsmokers), eating a healthy diet, maintaining a moderate level of physical activity and
avoiding too much alcohol. These already carry statements on reducing risk of cancer,
heart disease and diabetes. Potential links could be made across field support activity on
these topics.
It is important to be aware of NHS Health Scotland screening services materials and
activity they may be involved in when increasing awareness and informed consent and
participation in relevant population groups of the two national screening programmes.
There should be an opportunity to bring consistency across all relevant materials and align
them with the campaign.
26
Cancer Research UK and the Department of Health have undertaken insight research for
NAEDI (National Awareness and Early Diagnosis Initiative for England) to further explore
the barriers to early presentation and investigating how to motivate people with signs and
symptoms of cancer to visit their GP quickly. Qualitative research was undertaken with
cancer patients, the general public (segmented using DH’s Healthy Foundations model)
and general practitioners and provides useful insights in a number of areas including
attitudes to cancer, barriers to, and promoters of, presentation and responses to a number
of different messaging territories.11
NAEDI have also conducted a review of existing literature related to help seeking
behaviour and delay12 and additional evaluation research has been undertaken on existing
local and national initiatives targeting breast, lung and colorectal cancer including those
looking at hard-to-reach groups13.
It is proposed that additional Scotland-specific insight gathering be undertaken to identify
and validate key insights relevant for the Scottish audience and quantity which audiences
and attitudes have most potential to be shifted by marketing activity.
The Scottish Public Health Observatory (ScotPHO) website http://www.scotpho.org.uk
provides data information and statistics relating to cancers including breast, colorectal and
lung in addition to the community profiles.
The Department of Health has coordinated groups of experts and stakeholders to agree on
the key signs and symptoms for specific cancer types, to help ensure that clear and
consistent messages are promoted to the public. So far, key messages for breast, bowel,
lung, prostate, ovarian (public and health professional) and cervical cancer have been
developed. Applicability and acceptability for Scotland will be tested.
Whilst target audiences are outlined below for each campaign, deprivation remains one of
the key factors for cancer. Mortality rates from cancer in the most deprived areas are
around 1.5 times those in the least deprived areas (Equally Well: Report of the Ministerial
Taskforce on Health Inequalities). In addition, uptake of screening programmes for cancer
is significantly lower among those living in deprived areas.
A key challenge is therefore that this audience are more likely to suffer from cancer (due to
associated lifestyle factors) yet they are less likely to attend screening programmes and
potentially be diagnosed at an earlier stage.
Research will help refine the specific audiences for each topic
Across the over 50s, NAEDI insight gathering reveals commonalities identified with the
other segments:
27

Cancer (often referred to as “The big C”) is seen as a terrifying and generally fatal
illness. Many respondents report feeling uncomfortable with talking about the
illness:

Although it was known that a poor lifestyle or environment might encourage the
illness, many believe that cancerous cells are present in everyone and a
combination of luck and genetics would decide whether one developed it or not.

Treatment is considered painful, uncomfortable and, in some cases, often
ineffective

Early diagnosis was considered beneficial (to prevent the spread of the disease)
although most believed that cancers, once diagnosed, typically initiate a painful and
protracted demise.

Cancer was felt to affect everyone: health and unhealthy, rich and poor. It was
believed less likely that a healthy person would become ill but not impossible.
The key barriers for the target audience presenting early include the following:
1) They have a fatalistic attitude e.g. they are so scared of cancer that they avoid action.
This could be derived from their overall sense of well-being and inability to feel in control of
their own health.
2) They lack accurate knowledge of key symptoms.
3) They do not report symptoms – seeking medical advice for bodily changes is the
exception rather than the norm.
4) They do not take up the screening that is offered to them.
5) They are not regular attendees at their GP or informed of health risks.
Previous research into the audiences for each cancer type is included in the relevant
sections below.
2.2.1 Lung cancer
http://info.cancerresearchuk.org/prod_consump/groups/cr_common/@nre/@hea/documen
ts/generalcontent

Delay in reporting symptoms is associated with the type of symptoms, their variation
and lack of knowledge of these.
28

Difficulty in recognizing and interpreting symptoms of lung cancer were complicated by
the fact that many symptoms were not severe or specific. Unlike breast or testicular
cancer there is no symptom that would have been detected through self examination.

Even where a change in health was detected it was not seen as serious. People would
then tend to self manage symptoms, e.g. going to the pharmacist for cough medicine.
The nebulous, systemic and minor nature of symptoms, were contrary to expectations,
which added to delay in symptom reporting.

Additional factors that were identified include:
o A tendency to attribute symptoms to other causes and illnesses.
o A perception that participants were not at risk of lung cancers, even smokers.
o Once symptoms were severe enough to prompt alarm, underlying fatalistic
beliefs regarding lung cancer induced denial and delay.
o Expectations of stigma and blame regarding smoking and lung cancer,
sometimes reinforced by previous experiences of negative attitudes from health
professionals.
o Fear of embarrassment because of health consultations.
o Lack of knowledge of treatments for lung cancer reinforced fatalistic beliefs.
2.2.2
Breast cancer
http://info.cancerresearchuk.org/prod_consump/groups/cr_common/@nre/@hea/documen
ts/generalcontent

High levels of fear and anxiety act as a key barrier

There are important knowledge deficits – particularly in relation to the early signs and
symptoms

Low awareness and some key misconceptions about the risk factors (particularly in
relation to age and family history)

Confusion between the terms ‘being breast aware’ and ‘breast self-examination’ –
women are being exposed to competing messages

A reluctance to check breasts due to a combination of embarrassment and lack of
knowledge of how to do it and what to look for leading to potential over-concern

A range of barriers also relate to attending breast screening including fear that it is a
painful procedure, anxiety about the process, fear of a positive diagnosis of breast
29
cancer and inconvenient appointment times.
2.2.3 Colorectal cancer
http://info.cancerresearchuk.org/spotcancerearly/naedi/CR_044433
 Reasonable levels of awareness of disease but poor awareness of signs and symptoms
 Low awareness of incidence levels
 Lack of awareness that disease can be effectively treated if detected early
 Issues about embarrassment and stigma present but major issue is fear of diagnosis of
cancer
 Data from the Scottish bowel cancer screening pilots showed that men, in general, were
8-10% less likely to do the test than women.
It will be important to consider the importance of the attendance of high risk groups
(genetics, family history) for surveillance, and ensuring that adequate diagnostic capacity
is provided to cover this group of people in whom there is likely to be a high yield of early
stage cancers if surveillance is sufficiently regular.
2.2.4 Outline methodology, research and evaluation
NHS NSS Screening Services will play a part in increasing awareness and uptake in
relevant population groups of the three national screening programmes. NHS NSS ISD will
contribute to information gathering, data collation and processing and publication of
performance against the target.
NHS Education Scotland will facilitate promoting awareness amongst NHS employees of
risk factors associated with cancer and its presentation. There is considerable potential for
work with community pharmacists, health visitors and other health professional groups to
take forward this area of work.
Additional relevant stakeholders are the Scottish Cancer Coalition and associated cancer
charities, the Cross Party Cancer Group and the Scottish Cancer Taskforce. It is important
that we are aware of cancer charities’ campaign activities and messaging (particularly
where there may be potential conflicts e.g. negative vs. empowerment) and work with
them to try and maximise on community opportunity.
30
A full stakeholder mapping exercise will be undertaken and a stakeholder group will be
established. Regular stakeholder meetings will take place to inform at key stages of insight
sharing, strategic recommendations, campaign development, creative testing and
production.
The following research requirements are envisaged for this activity:
Insight Gathering:
Qualitative research will identify key insights and it is envisaged that this will be
undertaken with relevant audiences including those who currently do not have cancer,
people with cancer, GPs including those who do not have a special interest in cancer and
nurses, including public health practitioners, practice nurses and cancer nurse specialists.
It is envisaged that existing NAEDI creative will be included with permission.
Quantitative Research:
Telephone or face to face interviews will then be used to validate and quantify these
insights and to produce a segmentation. This should size the market and identify which
audiences and attitudes have most potential to be shifted by communications (or other
interventions).
Creative Development:
The lead strategic agency will be responsible for a mini competition with a minimum of 3
independent research agencies pitching to test the proposed creative work with the target
audience.
Campaign Evaluation:
Campaign evaluation will be conducted using HITS (Health Improvement Tracking Study).
Key measurables are: awareness, understanding and motivation. E.g. for the overarching
campaign the belief that early diagnosis/self awareness can save lives will be tracked.
Awareness of specific symptoms may then be tracked for the specific cancers.
Segmentation work will also allow post-activity tracking.
A full Return on Social Marketing Investment (ROSMI) report will be prepared for this
marketing activity.
Key digital measurements will be used to supplement this information.
Section 3: Primary Care cancer symptom management and referral strategy
31
This component of the work will raise awareness amongst primary care clinicians and
managers of cancer demographics, pathways and outcomes and facilitate benchmarking –
it is not be intended that this element of the programme will be used for performance
management but for reflection and action planning.
The assistance of the Scottish Primary Care Group and primary care cancer leads will be
integral to this work.
Primary care will have an important role to play in the overall awareness raising
campaigns to improve screening uptake and to improve early stage symptomatic
presentation. Particularly for those population groups at high risk and where health
improvement messaging has had a disappointing impact, targeted awareness raising
measures to alert people to symptoms or signs that they should report will be introduced
as described in Section 2 above. Primary care professionals including practice nurses
reviewing patients with other chronic diseases may be able to use brief intervention
techniques to screen patients for a recent history of suspicious symptoms, to alert patients
to those which need further investigation should they develop and to reinforce the positive
messages about the effect of early presentation on survival outcomes. Many will already
carry this out informally but recognition of the benefit and dissemination of good practice
should be facilitated. The knowledge and understanding of the national cancer screening
programmes, cancer diagnostics and treatment will need to be addressed to facilitate
these objectives.
3.1
Referral Profiling
There is a large variation in referral rates for suspected cancer between different GP
practices within Scotland. Patient demographics vary between GP practices, however
even taking this into account by excluding the highest and lowest 10% of referring GP
practices, there is still a six-fold difference in the total number of urgent suspected cancer
referrals per 10 000 population. It is difficult to explain this degree of variation by practice
demographics alone and it is suggested that factors relating to different thresholds for
referral amongst individual GPs are responsible. There is a risk that the highest referring
GP practices are over-investigating some patients, causing unnecessary anxiety and using
valuable resources whilst low-referring practices may be missing some early cancers
within their patient population. GP practices are often unaware of whether they are a high
referring or a low referring practice. A project to collect and circulate anonymised referral
data to individual GP practices for them to examine and reflect upon, based on work
already carried out in some NHS Board areas is expected to be useful. Those practices
with referral rates which are lie outside the normal range, compared to peers in the same
32
NHS Board area or across Scotland could be encouraged to identify reasons for their
referral pattern and, if appropriate, develop an action plan to help support their referral
decision making.
It is anticipated that work will be required to engage ISD and NHS Boards in identifying the
optimal proxy indicators of variations in cancer stage at diagnosis that could be used to
raise awareness of the links between recognition of suspicious symptoms and signs, mode
of presentation, urgency of referral and subsequent stage at diagnosis. In a similar way to
the feedback on prescribing that currently takes place, collection and reporting of this
information is expected to lead to raised awareness of the possibility of cancer as a cause
of symptom presentations and subsequently influence referral behaviour – for example
feedback of anonymised information to individual practices on referral rates, cancer
diagnoses via different routes, conversion rates on referrals or diagnostic investigation of
suspicious symptoms and the stage of disease at presentation or treatment. Where
required local NHS Board support could be provided for outliers in order to facilitate
reflective practice.
But a balance needs to be struck between earlier referral and the consequent risk of
increased numbers of negative diagnostic investigations, the burden of psychological
morbidity which this may cause and the impact on the efficient and effective use of NHS
resources.
The Scottish Primary Care Cancer Group (SPCCG) will be encouraged to work with the
data analysis team to add context to the data collected, in order that there is useful
understanding of why variation in referral rate occurs across different parts of the country.
SPCCG can assist in recommending how the data is shared with practices, advise on
steps that outlying GP practices might take to examine their referrals and recommend the
type of educational events that NHS Boards may choose to develop as a result of referral
profiling.
3.2
‘Think Cancer’ education and training
It is acknowledged that new cancer cases are relatively rare when considered against the
overall background of general practice consultations and contacts. It has been estimated
that the potential figures for new cancer diagnoses per year in the average general
practice are as follows:Number of New Cancer Cases per
annum per 1500 patients
Number of New Cancer Cases per
annum per average practice of 5000
7-8 (est.)
23-26 (est.)
33
Number of New Cancer Cases per
100,000 Population
460-520 (est.)
Some of the above cases will have been diagnosed through the national cancer screening
programmes or will have been an incidental finding of cancer. But according to data from
the Scottish DES Cancer Referrals Audit it is estimated that only around 18% patients
referred with a suspicion of cancer have a positive cancer diagnosis. This figure varies
according to tumour type. This means that if referrals are compliant with guidelines then at
least seven times as many guideline compliant referrals are made for the numbers
positively diagnosed.
Number of Referrals per annum with
suspicion of cancer per 1500 patients
40-45 (est.)
This does not include the large number of patients who are assessed by a GP (and who
are not referred. This number is not quantifiable.
With this low level of positive cancer diagnoses set against the number of consultations
with similar symptoms and signs that could equally indicate conditions other than cancer,
GPs have to make informed assessments taking into account risk factors such as family
history, nutritional history, associated symptoms and signs and often their overall ‘sense’
of the patient based on previous experience and their current general assessment of
vague symptoms and signs to arrive at a decision on next steps, particularly when the
perceived need for a ‘gate-keeping’ dimension also plays into the decision-making . It is
not unexpected that there is room for failure to recognise the need for further investigation
for possible cancer at a first or subsequent contact. Given the same or similar symptoms
and signs, identifying the one patient with cancer amongst the many who do not is
acknowledged to be difficult – likewise, raising awareness to a level that triggers thinking
about cancer as a possibility in the course of the consultation will lead to earlier referral for
further diagnostic tests or consultant opinion.
National and local education initiatives will be explored to deliver this change and lower the
threshold for further investigation of patients with suspicious symptoms and signs. Using
emerging evidence from the DCE programme, NAEDI and international studies, a case will
be presented to the Scottish Cancer Taskforce to determine whether an appraisal of the
need to revisit the national referral guidelines for cancer should be made and whether this
appraisal needs to examine a symptoms based rather than tumour type diagnosis based
approach.
3.3
Cancer Risk Assessment Referral Aids
34
NAEDI funded work has already been taken forward to develop risk assessment tools for
use within Primary Care with patients with symptoms or signs of cancer. These have
looked at the positive predictive values of certain cancer symptoms or signs. Participation
in the ongoing pilots of risk assessment tools would help determine the applicability,
feasibility and assessment of benefit and risks in the Scottish context. There is potential for
SPCCG to co-ordinate this work in Scotland and help recruit pilots.
The impact of this work with pilots south of the Border will be monitored to ensure that
large scale implementation of low value interventions does not take place. In addition to
robust evaluation, development of pilots will need to ensure accessibility and acceptability.
There is also some work to be taken forward in referral pathway redesign in order that
delays can be avoided. Safety netting with good practice in ordering, managing and
tracking tests and test results could be identified and disseminated and is likely to lead to
improvements in referral management. Patient safety reporting and significant event
analyses at local and national level will be facilitated.
3.4
Best Practice in Open Access Imaging
A recent paper in the British Journal of General Practice asked whether the ‘gate-keeping’
role of primary care may have an influence on cancer survival 7. Further work on this is
required before firm conclusions can be drawn, but there is emerging consensus that
opening access to imaging and diagnostics to primary care professionals will benefit
patients and the wider NHS.
Currently there is variable direct access to imaging and diagnostic investigation for GPs
across Scotland (CT Chest, CT Head, Isotope Bone Scan, Urgent Ultrasound,
Endoscopy). Direct access to diagnostics can speed up the diagnosis of early cancer. A
negative diagnostic test can also help to reassure patients that they are unlikely to have
cancer. Updated Royal College of Radiologists Guidelines on making best use of imaging
departments will be published later this year. A benchmarking exercise has already been
undertaken but examples of best practice within this area from around Scotland now need
to be collated with a view to reducing the variability of access across different Health
Boards.
‘Making Best Use of Your Radiology Department’ guidelines will be disseminated widely
across the UK when these guidelines are published in Autumn 2011.
35
Community diagnostics covers a huge breadth of activity within primary care and
identifying areas on which to focus is challenging. It is essential that any investment in
community diagnostics supports the Quality Strategy through the delivery of patient
centred, safe and effective care.
Variation in provision, usage and outcomes will be monitored to inform further
development of direct access initiatives.
Section 4: Strategy for Cancer Screening and Diagnostics Capacity
To achieve this commitment will require significant expansion of basic diagnostic
capacity and routine working outwith traditional hours in order to process results within
timescales. It will be essential for capacity in NHS Scotland diagnostics to be prepared for
an increase in demand which is anticipated to result from public awareness campaigns to
increase symptom awareness, encourage early presentation and improve screening
uptake. The preparatory capacity building work will commence as a matter of urgency to
minimise the potential for lengthy waiting lists to develop and to avoid performance against
cancer access and 18 week RTT targets being compromised.
There will be a need for NHSScotland to reduce the number of patients currently waiting
for a first appointment, to measure the demand and to provide sufficient capacity to meet
demand. Equally important will be the need to manage the risks of disadvantaging other
patient groups and to ensure that awareness is raised amongst referrers of those people
who may be at an earlier stage of disease or patients with symptoms or signs where the
possibility of cancer is less obvious and for whom the urgency for referral has not been as
high. It is vital that the high quality of care that has been delivered to patients with cancer
in Scotland is maintained and to ensure that NHS Scotland’s performance in cancer
survival outcomes improves relative to the benchmarks set by other European nations.
Consequently, this new target will be achieved by service redesign and pathway
development, aiming for long term sustainability.
It will be important to consider the importance of the attendance of high risk groups
(genetics, family history) for surveillance, and ensuring that adequate diagnostic capacity
is provided to cover this group of people in whom there is likely to be a high yield of early
stage cancers if surveillance is sufficiently regular.
It has been questioned whether there may be too high a threshold for investigation of
symptoms and signs that could indicate cancer and whether gate-keeping may be
36
inhibiting early diagnosis. The balance between early referral or investigation against
minimising costs and avoiding iatrogenic risks may need to be addressed. Protocols for
open access imaging will be developed to promote ease of assessment of symptoms and
signs suspicious of cancer with which patients present to their general practitioner. This
work will require links to be established with the Diagnostic Steering Group and the 18
weeks Referral-to-Treatment programme. Continuous monitoring of demand, capacity,
activity and queue will be developed for suspected cancer referrals against target
performance, risks will be identified and action plans developed. The Managed Diagnostic
Imaging Clinical Network and Scottish Pathology Network will be engaged in service
redesign towards capacity provision and managing demand. NHS Boards will work with
Regional Networks to identify current and estimate future workforce and resource needs in
diagnostics to achieve sustainable implementation and target compliance.
Methods of empowering patients who may be on a cancer diagnostic pathway will be
explored to promote mutual partnerships and shared decision making.
NHS Boards will be expected to prepare action plans on addressing the anticipated
increased capacity needs, making use of evidenced based guidelines to balance
improvements in quality with widening access. The Programme Board will oversee the
distribution of funding to enable implementation of local cancer diagnostics action plans
and a reporting template will be developed to monitor impact, utilisation and evaluate
diagnostics funding.
The programme should offer the opportunity to benchmark current awareness activity in
screening. National and local examples of good practice, including those that involve the
third sector are likely to prove useful. The Programme Board will expect to receive regular
reports on initiatives to improve informed uptake and will seek development of local action
plans to address lack of progress where appropriate.
The Board are also likely to wish to establish a programme that facilitates increased
knowledge and understanding of the national cancer screening programmes amongst the
wider health workforce. A better informed workforce will be in a better position to offer
advice on screening at health promotion opportunities.
Section 5: Performance Management Strategy
Effective reporting systems will be developed for measuring performance against the new
Detecting Cancer Early target. As with other HEAT targets, NHS Boards will provide a
forward plan of performance against trajectories (including a suite of improvement
37
measures and specific actions) every six months and there will be engagement with
Executive Cancer leads in NHS Boards on a regular basis.
Monitoring performance will be a function of the DCE Programme Board until there is
evidence of sustainability.
The Quality and Efficiency Support Team within the Scottish Government Health
Directorates (QuEST) will be engaged with the implementation and delivery plan for the
new cancer target in its role to work with partners to provide performance solutions for
NHS Boards, to provide delivery support founded on innovation, quality improvement and
technical expertise. QuEST also hosts the portfolio office for the NHS Scotland Efficiency
& Productivity Framework.
5.1
Maintaining current cancer access performance
To avoid an entire shift of focus and resources, the current waiting times targets for cancer
treatment will be maintained. Data shows that once patients are identified as having
cancer, they are treated quickly (half of them within a week) and it will be important to
maintain this standard.
Monthly and quarterly performance will continue to be monitored and for those NHS
Boards where target delivery is at risk, challenge and support will be maintained. This will
ensure that the current governance around the cancer access targets remains for NHS
Boards, ISD and SG to realise sustained performance against the target.
Accelerated development of IT solutions for tracking are anticipated – interim solutions
currently in place through the tracking workforce will be supported.
Decisions will be made in the current context of ensuring best value and avoidance of
systems and processes that do not promote high quality care.
5.2
Information and Data Management
38
Collection, collation and reporting of data will be crucial to the success of this initiative.
Providing information to primary care referrers, to sponsors of the national screening
programmes and to public health at NHS Boards will be required to identify variation, drive
improvement and report on the success of the programme.
Much data is already collected by Scottish Cancer Registry at ISD. Some new information
will be required at NHS Board, Community Health Partnership or even individual GP
Practice level – information on referrals and on use of diagnostic tests is already available
in some areas (‘Practice Profiles’) but this needs to become more widespread, easily
extractable and fed back to relevant personnel in a format that facilitates easy identification
of areas for improvement and the impact of any intervention.
NHS Boards will required timeous information to manage demand and plan diagnostic
capacity. Scottish Government will require timeous information to plan performance
support and management.
Scottish Government will work with ISD to achieve these goals and ensure that the high
standard of data collection, reporting and publication currently undertaken will be used
efficiently and effectively to ensure that the aims and objectives of the Detect Cancer Early
Programme are achieved.
5.3
Development of a HEAT target
Process targets used in cancer access to date have improved patient experience and
driven the progress towards speedier pathways to diagnostics and treatment. However, by
shifting to an outcomes based target that encourages earlier stage at diagnosis or
treatment, cancer survival rates will be improved. To achieve this goal a whole systems
approach will be required – involving the general public and third sector, primary and
community care, public health and screening and the acute sector.
The vision is to drive improvement in some of the underlying cultural, professional and
service configuration influences that contribute towards the cancer survival deficit that
prevails in Scotland when compared to the best performing countries in Europe.
Measurement of five year survival rates is complex and relies on collection of a wide
variety of data items and it will be at least five years after the introduction of this initiative
before it is clear whether survival has been improved as a result. By choosing instead to
target the ‘proxy’ indicator of stage of disease at diagnosis, and aiming to increase the
proportion of people who have early stage disease compared to late stage disease, it is
anticipated that overall five year survival will improve.
39
The latest cancer survival trends from analysis of ISD data on all patients diagnosed with
cancer between 1983 and 2007 demonstrate that percentage survival at five years after
diagnosis varied from under 5% for cancer of the pancreas in males, to over 95% for testis
cancer. Percentage survival was lowest in patients with cancers which often present at an
advanced stage and are less amenable to treatment (examples being cancers of the
pancreas, the lung and the stomach). Percentage survival tended to be better for cancers
with which patients are more likely to present at an early stage (for example, cancers of
the corpus uteri, thyroid, and malignant melanoma of the skin), for cancers which can be
detected early by screening programmes (for example, cancers of the cervix uteri and
breast), and for cancers for which there have been major advances in treatment (for
example, cancer of the testis). Over the period improvements in survival were seen for the
majority of cancers, and for several cancers the improvement was substantial.
5.3.1
What will the HEAT Target be?
This target will focus on the stage of the disease at which cancer is diagnosed and
treatment is provided and is described as follows:-
By end December 2015, to achieve a 25% increase over the baseline proportion
of those diagnosed and treated in the first stage of cancer (for the three types
combined: breast, colorectal and lung).
The key phrase is ‘the earlier the better’ - cancers which present at a advanced stage
and are less amenable to treatment have poorer survival outcomes. Often more complex
intervention is required at greater cost in an effort to maximise the chances of cure.
Although it is argued that simpler, palliative treatments may be given to those in the
advanced stages of cancer, the overall balance suggests that the Detect Cancer Early
Programme will be cost-effective rather than cost saving, particularly when the wider
societal benefits are included. Increasing the proportion of people diagnosed and treated
in the early stages of cancer (stages 1,2) compared to the later stages (3,4) will improve
overall cancer survival.
5.3.2 How will the target be delivered?
This target will encourage NHS Scotland and NHS Boards to apply initiatives that will raise
awareness of symptoms and signs that could indicate cancer, address barriers to help-
40
seeking behaviours and improve the uptake of national cancer screening programmes. It
will drive best practice in primary care referral behaviour and maximise capacity provision
in cancer diagnostic pathways.
To facilitate delivery of the target, the Programme Board will oversee a national
programme of work within the Local Delivery Plan (LDP) process. This programme of work
will seek to understand and address variation across NHS Boards in the rates of informed
uptake of the national cancer screening programmes, in the proportion of patients in whom
there is no record of disease stage and in the proportion of patients diagnosed with cancer
who present as an emergency compared to the proportion referred through the GP Urgent
Cancer Suspected route. NHS Boards will be expected to develop a suite of local
performance measures, improvements against which will contribute towards overall target
achievement
NHS Boards are expected to sustain >95% performance against the current cancer
access targets of
 62 days from urgent referral to treatment and
 31 days from decision-to-treat to treatment irrespective of referral type
5.3.3 How will the target be measured?
NHS Boards will be expected to submit data on the numbers of patients who have
received a first treatment for cancer during the quarter. The data will include items that
allow:




Calculation of number of days between urgent referral and decision-to-treat and first
treatment in patients with cancer
An assessment, based on clinical findings and the results of imaging and
pathological investigations, of the stage of the cancer at time of first treatment. This
assessment would be made in line with recognised clinical classifications of disease
stage.
The number of patients receiving a first treatment for cancer per quarter within each
stage and including the number in whom the stage of disease is not known or not
recorded
The number of people (and proportion of those invited) participating in the breast
and colorectal cancer national cancer screening programmes by Scottish Index of
Multiple Deprivation (SIMD)
ISD will be expected to collate returns from NHS Boards, process the data and publish
information on the numbers of patients treated, the number of patients treated within 62
41
days of urgent referral and 31 days of decision-to-treat and the numbers of patients at
each of the stages of the disease at the time of treatment.
Validated waiting times performance will continue to be published quarterly. Distribution of
stage of cancer at first treatment will be published annually. This is an NHS Scotland
target but NHS Board level data will be made available for management purposes in order
to support progress towards national target achievement. Scottish Government Health
Directorates will agree improvement trajectories with individual NHS Boards through
the LDP process and these trajectories will take account of local circumstances.
5.3.4 What is the baseline to be used to assess improvement?
A baseline is required, against which any improvements in the proportion of patients
diagnosed with early stage disease can be assessed. This is to ensure that the extent of
target achievement is transparent. Because data collection across NHS Boards and
across tumour sites is at different levels of maturity and because there is year to year
variability in the total incidence and proportion of cases at each stage, using data from one
year alone is unlikely to be meaningful. Similarly the latest published data for incidence is
for 2009, and if this is set as the baseline, there is likely to be improvements in early stage
diagnoses in colorectal cancer as a result of the introduction of the National Bowel
Screening Programme - these improvements may be falsely attributed to the Detect
Cancer Early Programme if currently reported statistics and timescales are used as the
target measures.
An average of two to five year data on incidence and staging has been proposed for use
as a baseline with a rolling average used to measure performance in the years to come –
this would help to reduce the impact of year-to-year variability on target performance.
Consideration has also been given to whether the baseline is expressed in terms of a
proportion of patients or numbers of patients in each stage category. The risk of basing a
target on increased numbers of patients is that if the overall incidence of cancer increases
(as most expect it will due to the ageing population) then additional patients will present at
the early stage anyway, without necessarily securing any increase in the actual proportion
of patients that present at an early stage. Without an increase in the proportion of patients
presenting at an early stage, the benefits of improved survival rates and lower treatment
costs etc will not be realised. A target based on increased numbers may however still be
sufficiently robust if some allowance of the likely increase in future cancer cases was
made within the target calculation but this is difficult to predict accurately and it has
42
therefore been concluded that the target will be a based on an increase in the proportion of
patients in stage 1 disease.
Table 5 below shows diagnosis staging information for colorectal, lung and breast cancer
from 2005 to 2009.
Table 5:
Cancer
Type
Early
Stage
Diagnosis
in 2005/09
Intermediate
Late
Stage
Stage
Diagnosis
Diagnosis
2005/09
in 2005/09
Unknown
Stage
Diagnosis
2005/09
Colorectal
11.3%
49.3%
18.0%
21.4%
6.2%
8.9%
34.4%
50.5%
29.3%
48.7%
4.3%
17.7%
15.0%
33.3%
20.1%
31.6%
Lung
Breast
All 3
Combined
At present Breast cancer has the highest early diagnosis rate with 29.3% of cases
diagnosed at the first stage of the disease. Only 6.2% of lung cancer cases are diagnosed
at the earliest stage of the disease.
43
35%
% Diagnosed Early
30%
25%
20%
15%
10%
5%
Colorectal
Lung
Breast
Combined
0%
2005
2006
Source: ISD Cancer Registry Statistics
2007
2008
2009
Year
A baseline using data on stage of cancer diagnosis from 2005 to 2009 (i.e. the latest 5
years of statistics) has been considered. This takes account of random year to year
variation. The chart above demonstrates that in each of the last 5 years the proportion of
cancer cases diagnosed at the earliest stage for all 3 cancers combined has remained
very stable at around 15%. Behind that figure there has been a fall over the period in the
proportion of breast cancer cases diagnosed at early stage, which has been offset by an
increase in colorectal cancer diagnosed at the earliest stage (and a smaller increase in
lung cancer diagnosed at early stage).
Table 6 below shows baseline data for 2005 to 2009 by NHS Board. This refers to the % of
cancer cases diagnosed early and the % of cases with an unknown diagnosis. Most
mainland Boards are fairly close to the Scottish average of 15% of cancer cases
diagnosed at the earliest stage, though at 22% Dumfries & Galloway is significantly higher.
This may be accounted for by the far lower proportion of cases in D&G with an unknown
stage of diagnosis (17%). At 42% the percentage of cases in Lanarkshire with an unknown
diagnosis is the highest in Scotland. 2 other large Boards, Glasgow and Grampian, also
have a greater than average proportion of cancer cases with unknown stage of diagnosis.
44
NHS Board
% Cases
Diagnosed Early
2005/09
% Cases with
Unknown Diagnosis
2005/09
Ayrshire & Arran
16%
29%
Borders
18%
34%
Dumfries &
Galloway
22%
17%
Fife
18%
25%
Forth Valley
17%
25%
Grampian
12%
34%
Greater Glasgow &
Clyde
13%
37%
Highland
17%
24%
Lanarkshire
13%
42%
Lothian
17%
26%
Orkney
11%
40%
Shetland
12%
36%
Tayside
15%
36%
Western Isles
15%
24%
Table 6: Source: ISD Cancer Registry Statistics
45
The target is to increase the baseline proportion of those diagnosed in the first stage of
cancer (for the three types combined: breast, colorectal and lung) by 25% by the end of
December 2015.
Increasing the baseline proportion of 15.0% by 25% would give a target of 18.8% of cases
diagnosed at the first stage of cancer by December 2015.
During the baseline period, an average of 1,842 people were diagnosed with first-stage
cancer each year. By 2014/2015 (a possible 2 year end-point for the target), it is forecast
that this will grow to 2,100, due to increasing cancer incidence as a result of an ageing
population. If first-stage diagnosis was increased by 25% then the number of people
diagnosed early each year during 2014/2015 is forecast to increase to 2,600. As such an
estimated additional 500 people could be diagnosed early as a result of the target being
delivered.
Using information that compares survival rates to stage of diagnosis, it is forecast that the
successful delivery of a 25% increase in first-stage diagnosis could lead to an additional
300 to 330 people surviving cancer at 1 year, and an additional 410 to 430 people
surviving cancer at 5 years (both are annual average figures). Given the current low-levels
of early diagnosis (and associated high survival rates if caught early) for colorectal cancer,
it will play the biggest part in achieving improved survival rates from the delivery of the
target. Whilst Lung cancer also has a very low early-diagnosis rate, the survival gains from
increasing first-stage diagnosis are much more limited given the nature of the disease.
The tables below give the survival measures for stage of diagnosis for three major tumour
types. The proportion of people in each stage is based on clinical audit data submitted to
ISD for 2008, the latest year for which data is currently available. The tables demonstrate
that the earlier cancer is diagnosed, the greater the proportion of patients that survive at
least 5 years.
46
Table 7:
Colorectal
Stage
No. of patients
(2008)
%age of
patients
Est %age 5-year survival
A
468
12.6%
90%
B
920
24.7%
65%
C
921
24.7%
30%
D
690
18.5%
10%
Unknown
727
19.5%
Table 8:
Breast
Stage
No. of patients
(2008)
%age of patients
Est. %age 10year survival
1
1169
29.7%
75-95%
2
1620
41.1%
40-85%
3
290
7.4%
0-35%
4
183
4.6%
<5%
Unknown
677
17.2%
Table 9:
Lung
%age of patients Est. %age 2-year
survival
Stage
No. of patients
(2008)
1
391
8.1%
50%
2
144
3.0%
10%
3
564
11.7%
10%
4
1863
38.6%
10%
Unknown
1867
38.7%
47
5.3.5 How will stage 1 be defined?
Stakeholders from ASD, ISD and NHS Board cancer audit staff have met to consider the
definitions and current position around data collection for stage of cancer at diagnosis in
Scotland.
Clinical and/or pathological classifications of stage are used depending on the cancer type.
In the TNM (Tumour, Node, Metastasis) system of staging, clinical stage and pathologic
stage are denoted by a small "c" or "p" before the stage (e.g., cT3N1M0 or pT2N0).
Clinical stage is based on all of the available information obtained before a surgery to
remove the tumour. Thus, it may include information about the tumour obtained by
physical examination, radiologic examination, and endoscopy.
Pathologic stage adds additional information obtained by histological examination of
resected tumour.
For consistency, a decision will be required on the type of classification that will be used
throughout the target period for performance measurement. The classification used need
not be the same for the three tumour types.
The operational subgroup will consider the data and definitions which will apply to the
HEAT target and will issue early guidance on how stage will be recorded for the purposes
of this target. Publication of progress against the target has to be meaningful and easily
understood – it may be necessary to convert the currently recorded TNM stage to
collapsed/derived stage e.g. I, II, III, IV to achieve this.
5.3.6 How will the effect of ‘unknown stage’ be managed?
Data requested from ISD on historical incidence of lung, colorectal and breast cancer in
Scotland demonstrates variability in the percentages of cases whose stage of disease is
unknown. This varies by cancer type, with almost half (48%) of diagnosed cases of lung
cancer in 2007 and 2008 having unknown staging information, compared to only 18% and
20% for breast and colorectal cancer. In some cases having unknown staging information
is unavoidable but the wide variation in unknown stage of diagnosis between territorial
health boards suggests more than just medical factors account for the large proportion of
unknowns. For example in NHS Borders almost 90% of colorectal cancer cases in 2007
and 2008 had a known stage of cancer at diagnosis, compared to only 72% in NHS
Lanarkshire. Given this, attempts should be made to ensure that staging data is as
complete as possible to avoid distorting the assessment of performance. Consideration
may need to be given to setting a standard to which NHS Boards should strive that
indicates the percentage of cases where stage status is known
48
The effect of variation in the proportion of unknown stage is illustrated in the example
below:
Table 10:
NHS Board
% Stage 1
% Stage 2
% Stage 3
% Stage 4
% Stage
Unknown
A
B
C
23
16
10
22
23
19
20
17
12
23
23
20
13
21
39
From the above example, it appears that Board C has a significantly lower proportion of
patients who have been diagnosed at Stage 1 compared to Board A. However, the
proportion of patients with unknown stage is far higher and if the stage for these patients
were known (some of these patients will inevitably be stage 1 patients) performance in
terms of stage of distribution would be improved for Board C, without any DCE programme
intervention but as a result of data recording alone. This needs to be considered when
setting the baseline – otherwise the risk is that the DCE Programme is incorrectly credited
with achieving the desired improvement and it remains likely that individual NHS Board
targets and the overall HEAT Target baseline will be reassessed in the light of data
quality work that reduces the proportion of cases where stage is unknown.
5.3.7 What are the timescales for reporting and publishing?
Data on cancer incidence is currently submitted to ISD around nine months after calendar
year end and a report produced around 20 months after calendar year end. The lag period
allows for data linkages to be made and facilitates maximum accuracy of the reports – an
achievement of which Scottish Cancer Registry are justifiably proud. However, these
timescales do not easily allow for the effectiveness of the components of the programme
to be assessed or for performance support initiatives to be offered that will impact upon
target delivery in a sufficiently timely manner. Clinical staging is reasonably accurately
assessed to allow multidisciplinary teams to decide upon treatment plans but currently this
information is not routinely recorded – this will require clinical buy-in to achieve change.
Pathological staging for colorectal cancer should be available for recording purposes one
or two weeks after surgical treatment but is not routinely recorded or submitted until much
later.
Data submission and reporting timelines will be agreed that balance timeliness and
accuracy.
49
5.3.8 Will this be a NHSScotland target or NHS Board target?
Preliminary work on the recent data indicated that NHS Boards across Scotland varied in
the proportion of patients who were diagnosed at each stage of disease. The variability
persisted even after combining all three cancer types and across two years (2007 and
2008).
An outcome for this target is to encourage NHS Boards to scrutinise differences in survival
rates among different demographic groups (gender, race, income) and identify those
groups where the most effort at targeted interventions (e.g. to improve uptake of
screening) will yield the biggest impact on target compliance. Examples of such
interventions have used programmes grounded in local communities where people support
each other and where people are provided with the information about symptoms that
enable them to make the correct choices about seeking help. The target should be set
such that it will incentivise this work, but will also reflect national performance. Although
this will be an all-Scotland target, NHS Boards will have individual targets that will
contribute to this, determined by the data quality work and subject to change as more data
becomes available over the next few months.
5.3.9 Will the target combine all three tumour types?
A variety of initiatives can be applied to achieve improvements in the proportion of patients
with early stage disease; however these initiatives will differ according to the tumour type
and the target population.
There are also differences in the ‘baseline’ staging category proportions for each tumour
and different potential for improvements. For example for breast cancer, over 70% of
cases are in stage I or II at diagnosis where as for colorectal, less than 40% of cases are
in stage I or II at diagnosis. In contrast to this, over 70% of eligible women attend breast
screening whereas uptake of the colorectal screening programme is less than this at
around 60% - therefore the potential for improving the proportion of those presenting with
early stage disease as a result of the DCE programme or for encouraging more screening
programme participation is lower for breast cancer.
The target will be for all three tumour types combined. The risk that failure to improve
earlier presentation for some tumour types may be masked by success in one of the other
tumour types will be closely monitored.
50
5.3.10
Management information indicators
Indicators of performance will be considered to provide a level of assurance that the target
is likely to be met. NHS Boards are encouraged to use the following as proxy indicators of
performance



to reduce the variation in proportion of patients in whom there is no record of
disease stage so that the low levels of unknown stage achieved by the best
performing NHS Boards are reached,
to increase informed uptake of the national cancer screening programmes
to increase the proportion of patients diagnosed with cancer who have been
referred through the urgent cancer suspected route, reducing the proportion of
those who presented as an emergency
The requirement for this information will be assessed following discussions with NHS
Boards prior to the HEAT Target and LDP trajectories being agreed in Spring 2012 and
once data collection methods and frequency are agreed.
5.4
Potential for including other tumour types within the programme
The NAEDI work in England has identified that in order to achieve their programme
objectives, awareness raising and early detection needs to be extended to other tumour
types. The stakeholder engagement process undertaken during August 2011 for this plan
and summarised in section 1 above was clear that breast, lung and colorectal should be
priorities for awareness raising and early detection work but that other tumour types should
be introduced into the programme at the earliest opportunity. This will be considered by
the Detect Cancer Early Programme Board at one of the first few meetings. Although the
detailed work around a HEAT Target for this programme has been carried out, one option
that could be considered by the Programme Board may be the pursuit of awareness
raising initiatives for other tumour types without the need for inclusion within the HEAT
target cohort.
5.5
Risks to Delivery
Failure to achieve target delivery may result from the following risks
 public awareness campaigns do not result in an increase in help-seeking behaviour
 failure to improve rates of uptake of national screening programmes, particularly in
the most deprived communities
51








achieving target will be very dependent upon influencing behaviours in hard-toreach and deprived groups – failure to do this risks widening the gap across social
classes in terms of outcomes
failure of diagnostic and treatment capacity to meet potential demand increase
failure of national screening programmes to manage potential demand increase
failure to have in place robust data collection, collation, processing and publication
systems at NHS boards and ISD
Some cancers are asymptomatic until later stages and it may be difficult to promote
a shift to early stage if there is a general increase in all stage presentations
There are risks of over-investigation and over-diagnosis but benefits are expected
to exceed the harms
Other elements of the Scottish Cancer Taskforce work plan may receive a lower
priority if effort is disproportionately focussed on detecting cancer early – in
particular the national cancer quality programme and the need for readiness for late
effects of treatment, surveillance, information and support
Other influences impact on survival including the co-morbidities and efforts to
improve early stage presentation alone may not have the desired effect on 5 year
survival outcome
The above risks will be managed by
 ensuring that effort is prioritised towards influencing screening uptake, awareness
and help-seeking behaviour in deprived and hard-to-reach communities
 literature searches and evidence from previous cancer awareness programme
evaluations in Scotland and other parts of the UK is used to inform awareness
campaigns
 robust evaluation and measures of effectiveness are developed for all initiatives and
best practice is widely disseminated
 ensuring national screening programmes, primary care, diagnostic and imaging
departments are involved at an early stage to promote capacity planning and
redesign that will best facilitate demand management
 ensuring ISD and NHS Board Clinical Effectiveness and Audit departments are
involved at an early stage to provide best opportunities for data handling
 Keeping an up to date delivery risk matrix via SG business planning tool
 Ensuring optimal pre-treatment physical and psychological well-being will continue
to be taken forward in conjunction with the measures above.
 Scottish Cancer Taskforce will continue to closely monitor progress against the
other elements of cancer service delivery in its work plan and address any areas
where expected progress is not being achieved.
52
Section 6: Timetable for Key Deliverables
The following is a summary of relevant timelines:Aug 2011
Sept 2011
Sept 2011
Sept 2011
Oct/Nov 2011
Sept 2012
Sept 2012
Oct/Nov 2012
Jan – Dec 2013
Sept 2013
Sept 2013
Oct/Nov 2013
Sept 2014
Sept 2014
Sept 2015
Sept 2015
Oct – Dec 2015
March 2016
May 2016
Stakeholder engagement
Final implementation plan
Local data for 2010 submitted
ISD publication of annual data for 2009
Agree HEAT target, milestones and LDP
Local data for 2011 submitted
ISD publication of annual data for 2010
Agree HEAT target, milestones and LDP
Delivery period if ISD annual publication used
Local data for 2012 submitted
ISD publication of annual data for 2011
Agree HEAT target, milestones and LDP
Local data for 2013 submitted
ISD publication of annual data for 2012
Local data for 2014 submitted
ISD publication of annual data for 2013
Delivery by date (if quarterly publication is possible)
Latest publication date (Purdah in April)
Election
To be able to demonstrate delivery of the target within the parliamentary term will depend
on which data is used for publication of performance. The differences are highlighted in
section (3) above.
If current ISD publication of incidence statistics is used then NHSScotland would need to
achieve delivery against the target during 2013 (because the results would not be
published until Sept 2015 and this would be the last set published before an election). This
is unlikely to give sufficient time to start the programme, run awareness campaigns and
impact upon referral behaviour, nor will it be sufficient time for diagnostic capacity to be
increased. Any improvements are therefore unlikely to be attributable to the Detect Cancer
Early programme. The initiative will be dynamic and ongoing, with evaluation of a final
outcome within a parliamentary term very challenging.
If the programme took until 2015 to have an impact, then data collection, reporting and
publishing would have to be accelerated markedly in order to be in a position to
demonstrate the success of the programme prior to the election in May 2016.
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Section 7: Conclusion
This is an ambitious programme. There are considerable risks in setting a target which
requires a whole systems approach to achievement. No previous cancer target has
required the involvement of the third sector, public health, primary care and the acute
sector to such an extent. But the progress in cancer care made so far in Scotland must be
converted into real gains in terms of survival outcomes and this will only be achieved if all
the components of the Detect Cancer Early Programme are taken forward together.
Otherwise the risks of not achieving the aims of the programme are greater – that the
population of Scotland fails to derive lasting benefit from the investment that has been
made in cancer services over the last two decades or that the efforts to streamline the
cancer journey in pursuit of compliance with access targets have been made in vain and
that furthermore, NHSScotland is ill-prepared to meet the challenges arising from the
anticipated increase in age-related cancer incidence and performance in Scotland falls
further behind its European counterparts.
Section 8: References and Further Information
1Richards,
M. A., The size of the prize for earlier diagnosis of cancer in England; British
Journal of Cancer (2009), S125 – S129
2Coleman,
M.P. et al, Cancer survival in Australia, Canada, Denmark, Norway, Sweden,
and the UK, 1995—2007 (the International Cancer Benchmarking Partnership): an
analysis of population-based cancer registry data; The Lancet, Volume 377, Issue 9760,
Pages 127 - 138, 8 January 2011
Awareness of Cancer Symptoms – report from a national workshop; Scottish
Cancer Taskforce 22 January 2010
3Better
4Brewster
D.H. et al, Characteristics of patients dying within 30 days of diagnosis of breast
or colorectal cancer in Scotland, 2003 – 2007; British Journal of Cancer (2011) 104, 60-67
54
5Verdecchia,
A., Recent cancer survival in Europe: A 2000-2002 period analysis of
EUROCARE-4 data; The Lancet [published on line 2007]
6http://www.scotland.gov.uk/Topics/Health/health/Inequalities/inequalitiestaskforce
7Vedsted,
P. et al, Are the serious problems in cancer survival partly rooted in gatekeeper
principles? Br J Gen Pract, Aug 2011
8(Unpublished)
Theory based primary care intervention to promote timely consulting with
symptoms of lung cancer: randomised controlled trial – contact Neil Campbell, University
of Aberdeen
9Breakthrough
Breast Cancer Survey (2006) Telephone interviews by ICM involving 2,200
UK women aged 50 or over
10info.cancerresearchuk.org/prod_consump/groups/cr.../cr_043175.pdf
11 http://info.cancerresearchuk.org/spotcancerearly/naedi/AboutNAEDI/achieving-early-
presentation/
12http://info.cancerresearchuk.org/prod_consump/groups/cr_common/@nre/@hea/docume
nts/generalcontent/cr_043179.pdf
13 http://info.cancerresearchuk.org/spotcancerearly/naedi/local-activity/getting-
results/interventions-services-and-service-change-public/
Other useful information:
Improving Cancer Outcomes: An analysis of the implementation of the UK’s cancer
strategies 2006-2010 Cancer Research UK 2010
Referral Management – Lessons for Success King’s Fund 2010
How to improve cancer survival – explaining England’s relatively poor rates King’s Fund
June 2011
British Journal of Cancer Supplement December 2009: Diagnosing Cancer Early:
Evidence for a National Awareness and early Diagnosis Initiative
http://www.nature.com/bjc/journal/v101/n2s/index.html
55
DH Publication (December 2010): The likely impact of earlier diagnosis of cancer on costs
and benefits to the NHS: Summary of an economic modelling project
Link to ISD Scotland Cancer Reports website incl National Cancer Screening Programme
Reports
http://www.isdscotland.org/Health-Topics/Cancer/
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