Download cancer data: empowering you to act

CANCER DATA:
EMPOWERING
YOU TO ACT
A guide for Members of
Parliament
Where to find the cancer data that matters
to your constituents and how you can use it
to take action
2
This toolkit has been created to help you access the cancer data that tells you about your
local cancer services, allowing you to scrutinise their performance and compare them to
the national average.
As well as making it easy to find these data, we have suggested a number of ways that
you can take action in both Parliament and in your local area.
Armed with the best data and suggested actions, we are aiming to put you
in a position to improve outcomes and experiences for local cancer patients
and their families.
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Contents
About this toolkit
pages 4-6
What can you do?
pages 7-9
Where you can find local cancer data
pages 10-17
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•
•
•
•
•
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Incidence
Prevalence
Mortality
Survival
Patient experience
Waiting standards
Screening and vaccination
About the Cancer Campaigning Group
pages 18-20
Contact details
pages 21-22
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About this toolkit:
why local data matters
Why local data matters
About this toolkit: purpose
This toolkit is designed to help you access local cancer data, so you can assess
the quality of cancer services in your area, and work together with partners to
identify ways to improve these services. For example, if your area has high
incidence of cancer, it may require specialist prevention or public awareness
programmes. To help with this, we have suggested a number of actions you
can take. Ultimately, effective use of local data, driving action, has the power
to improve outcomes and experiences for patients and their families.
Where can you find cancer data?
A wealth of cancer data exists, but it is held in a number of different places.
This includes: Public Health England (PHE), the Health and Social Care
Information Centre (HSCIC), the National Cancer Intelligence Network (NCIN)
and the Office for National Statistics (ONS).
Further details
Most of the data we refer to in this toolkit are available at clinical
commissioning group level, but where this is not the case, we have outlined
how to access the most local data available. Not all of the data are available for
children and young people: the age range of the data has been made clear
within each section. Further, in line with the work of the Cancer Campaigning
Group, the toolkit is focused on England only. Some UK-wide statistics have
been used where these are the only available statistics.
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Accessing data: some considerations
It is not always straightforward to access data. The specific type of data
you may be interested in might be difficult to find, of low quality, not
publicly available or not routinely collected by the NHS. For example, for
members of the public to access data from datasets which contain
information about radiotherapy and chemotherapy, special requests must
be made to the bodies that govern it. This is important to protect patient
data.
Furthermore, data can also be hard to reach for specific patient groups,
such as children and young people; BME patients; and those with rarer
cancers. Despite being hard to find, it’s important to consider such
subgroups when analysing where variations occur.
We believe that the NHS should aim to produce high quality data that is as
transparent and accessible as possible, as there are huge benefits to
promoting public understanding of services and their performance.
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Cancer in context: why should you act?
The number of people
living with cancer is
projected to double from
two million in 2010 to
four million by 20301
Cancer is one of the
diseases people are most
scared of4
60 per cent of new UK
cancer cases are
diagnosed in people aged
65+2
Cancer is responsible for
one in four deaths in the
UK3
UK cancer outcomes still
lag behind the best in
Europe5
Cancer is the most
common cause of nonaccidental death in
children and young
people6
What can you do?
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What can you do?
The data signposted to in this
toolkit empowers you to
scrutinise the performance of
cancer services in your local area
so that you can take action.
Locally
The following chapter includes
specific actions that you can take
in response to each dataset.
The overarching actions set out
here can be framed around any,
or all, of the datasets that follow.
In Parliament
• Write to the chief executive of your local clinical
commissioning group and hospital trust to ask what is
being done to improve cancer outcomes
• Examine the local statistics outlined to compare local
performance against the national average
• Meet with local patient groups to ask about their
experiences of local cancer services
• Seek meetings with all local partners to collaborate in
helping to improve local cancer services
• Table parliamentary questions on the performance of
your local services
• Highlight case studies of effective local services in
parliamentary debates
• Where performance requires improvement, write to the
Secretary of State for Health and ask what steps are
being taken at a national level to support local services
• Meet with local and national partners to explore how
they can work together to improve cancer outcomes
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What can you do?
Not all services for cancer
patients are commissioned
locally. Constituents who have
rarer cancers and children and
young people with cancer are
likely to access specialised
services, which are
commissioned by NHS England,
as well as those commissioned by
your local NHS. This list of
specialised conditions can be
found here.
We have included some
suggestions for action you might
take on behalf of these
constituents.
• Table parliamentary questions on the performance of
specialised services
• Highlight case studies of constituent experience of
specialised services in parliamentary debates
• Where performance requires improvement, write to the
Secretary of State for Health and NHS England to ask
what steps are being taken at a national level to
improve NHS cancer care
• Meet and work with your NHS England Regional Teams
to encourage action to improve cancer services that
they are responsible for
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Where you can find local
cancer data
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Incidence
Why do incidence data matter?
Incidence data tells you the number of new cases of cancer diagnosed in your area,
within a specific timeframe. Higher cancer incidence could be a linked to a range of risk
factors7, for example smoking.
Incidence data helps to assess the burden of cancer in your area and whether cancer
prevention and public health programmes are needed.
What incidence data are available?
The latest incidence data available for England are available at both clinical
commissioning group level and local authority level for all cancers.
At clinical commissioning group level, incidence data are available for 2012. At local
authority level, incidence data are available for 2010-2012. These data are agestandardised, which means that the statistics are adjusted to take into account the age
range of the population in question. This makes it fairer to compare one area against
another.
Where can I access incidence data?
Questions to consider:
• How does the cancer incidence rate in my local area compare to the national
average? Why is my area below/above the national average?
• What public health programmes are being run to try and help prevent cancers from
occurring?
Incidence data for local authorities can be accessed via the
HSCIC indicator portal, here. Once within the portal, search
for “incidence of all cancers” and follow the first option.
Incidence data for clinical commissioning groups can be
accessed via Local Cancer Intelligence. It can also be
accessed via the Cancer Commissioning Toolkit, here.
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Prevalence
Why do prevalence data matter?
Prevalence data tells you the total number of people who are living with cancer in a
given area, in contrast with incidence data, which tells you the number of new cases in a
given time period.
Prevalence data are important as they demonstrate an increasing number of people
living with cancer, who may have different care or treatment needs from those who are
newly diagnosed with cancer.
What prevalence data are available?
The latest prevalence data available for England at clinical commissioning group level
shows the number of people living with cancer in 2010 who were diagnosed between
1991 and 2010. In addition, Local Cancer Intelligence contains projections on the 20year cancer prevalence for your local clinical commissioning group.
Where can I access prevalence data?
The HSCIC also has data on cancer prevalence for the financial year 2013/14, outlining
the number of cancer patients for each clinical commissioning group as a percentage of
the total number of patients.
Prevalence data for clinical commissioning groups can be
accessed via Local Cancer Intelligence, which includes
projections on the 20-year cancer prevalence for your local
clinical commissioning group.
Questions to consider:
• What is the trend for the number of people living with cancer in my local area?
• What services are in place to ensure that people living with (and beyond) cancer
have the right amount of social and emotional support, as well as access to
appropriate treatments?
HSCIC data on cancer prevalence for 2013-14 can be
accessed via the indicator portal, here . Once within the
portal, search for “prevalence of all cancers” and follow the
first option.
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Mortality
Why do mortality data matter?
Cancer mortality measures the number of people who have died from
cancer in a given period of time. Age-standardised mortality data are
important as they help to establish how effective local cancer services are
at helping cancer patients to prolong life. Significant regional variation
exists in the most recent data, with the best performing clinical
commissioning group having 106.9 deaths from cancer per 100,000
people, and the worst performing having 2439.4 deaths per 100,000
people.
What mortality data are available?
Cancer mortality data are available at clinical commissioning group level,
for all cancers (excluding non-melanoma skin cancer) for the years 200812. This data is age-standardised, which means that the statistics are
adjusted to take into account how many old or young people are in the
population in question.
The data are also available at local authority level for 2012.
Questions to consider:
• How does the cancer mortality rate in my local area compare to
the national average? Why is my area below/above the national
average?
• Are patients in my area receiving the best possible treatment to
enable them to live for as long as possible?
Where can I access mortality data?
Mortality data for clinical commissioning groups can be accessed via Local Cancer Intelligence. It can also be accessed here, via the Cancer
Commissioning Toolkit. Mortality data are available at local authority level via the HSCIC indicator portal, here. Once within the portal, search for
“mortality of all cancers” and follow the third option.
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Survival
Why do survival data matter?
What survival data are available?
One-year survival data are widely considered to be very important as a proxy
measure of early diagnosis8. This means that areas with a high one-year survival
figure are diagnosing patients early enough to give them a good chance of longterm survival. The All-Party Parliamentary Group on Cancer has campaigned for
greater scrutiny of one-year survival data for this reason9.
One-year survival data are available for 2012 at individual clinical
commissioning group level. These data are updated annually.
These data are age-sex standardised, which means they are
adjusted to account for changes over time in the profile of
cancer patients by age, sex and type of cancer.
Five-year survival data provide an understanding of how successful England’s cancer
services are at helping people to beat cancer for the longer-term. For this reason,
five-year survival figures are often used to compare cancer outcomes in the UK with
other countries10.
Five-year survival data are only available at NHS Area Team level,
for six types of cancer, for those diagnosed between 2004 and
2008, followed up to 2013.
Where can I access survival data?
One-year survival data for adult cancer patients are available at clinical
commissioning group level and can be accessed here, via the ONS.
Five-year survival data at NHS Area Team level for six specific cancers are available
here, via the ONS.
Questions to consider:
• What does the one-year survival rate say about levels of early diagnosis in my local clinical commissioning group?
• What steps are being taken to encourage early diagnosis in my local clinical commissioning group?
• How are those living with and beyond cancer in my local area being supported?
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Patient experience
What patient experience data are available?
Why do patient experience data matter?
While clinical outcomes are very important, patient
experience of care is also crucial. This is especially
true of cancers that are harder to cure, where clinical
outcomes are likely to be poorer. Patient experience
data helps to measure and assess the quality of
patient care at your local provider(s) on a wide range
of issues, including patients being involved in
decisions about their own care, receiving the right
information, having access to appropriate nurse
specialists and rating their overall care as ‘excellent’
or ‘very good’11.
Patient experience data are now being used in a
buddying scheme, where highly performing trusts
will help to share best practice and accelerate the
adoption and spread of new ways of working with
other trusts.
The Cancer Patient Experience Survey (CPES)
has been running since 2010, and has
reported four times. The CPES measures the
experience of cancer patients over the age of
16 by collecting answers to approximately 70
questions each year. Data are available at
trust or foundation trust level and are also
available for a number of specific cancers, as
well as for all cancers combined. An annual
report on CPES data is also available.
CPES is not due to report in 2015 due to the
contract for the survey being re-tendered,
however, it is expected to report again in
2016. There is currently no CPES for cancer
patients under the age of 16 or their parents.
Where can I access patient experience data?
CPES data is available here. The most recent
annual report is available here. Macmillan’s
CPES league tables are available here, and
information on the newly established CPES
buddying scheme can be seen here.
Questions to consider:
• In which areas of the CPES does my local
trust perform well? In which areas does my
local trust perform poorly?
• How are local NHS leaders working to
improve patient experience?
• Has my local trust improved its CPES scores
since 2010? If not, why?
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Waiting standards
Why do waiting standard data matter?
Waiting standard data makes it easy to see whether your local area has
persistent and unacceptable delays in patient care.
Shorter waiting times help to ease patient anxiety and in best cases, can
lead to earlier diagnosis, quicker treatment, a lower risk of complications,
enhanced patient experience and improved cancer outcomes12.
Where can I access waiting standard data?
Clinical commissioning group profiles in the Public Health England Cancer
Commissioning Toolkit, available here, contain quarterly updated statistics
on the six waiting standards.
What waiting standard data are available?
Data are available on a number of waiting standards for all cancers at clinical
commissioning group level, updated on a quarterly basis. Each of the waiting
standards is detailed below:
• Two week wait performance – the number of patients seeing a specialist
within two weeks after being referred with suspected cancer by their GP
• 31 day standard performance (first treatment) – the number of patients
starting first treatment within 31 days of diagnosis
• 31 day standard performance (subsequent treatment) – the number of
patients starting subsequent treatment within 31 days
• 62 day standard performance (first treatment) – the number of patients
waiting a maximum of 62 days to begin their first treatment following
urgent referral for suspected cancer from their GP
• 62 day standard performance (screening) – the number of patients waiting a
maximum of 62 days to begin their first treatment following referral from an
NHS cancer screening service
• 62 day standard performance (upgrade) – the number of patients starting
first treatment following a consultant’s decision to upgrade a patient’s
priority
Questions to consider:
• Are any of the waiting standards outlined being missed in my local area? If
so, how long has it been since they were last met?
• What action is being taken to address unacceptable delays in waiting
standards?
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Screening and vaccination
Why do screening and vaccination data matter?
What screening and vaccination data are available?
Screening for cancers can save lives. For example, the breast cancer screening
programme is estimated to save 1,300 lives a year13. Similarly, HPV (human
papilloma virus) vaccination plays a significant role in helping to prevent
cancer. As such, ensuring that all eligible persons are being screened and
vaccinated is crucial.
The NHS Screening Programme currently runs three national screening
programmes, for breast, cervical and bowel cancers. Data are available
routinely for both the breast and cervical screening programmes, but not for the
bowel screening programme.
Screening and vaccination coverage can vary, and data can demonstrate such
inequalities. For example, some London local authorities have significantly
lower HPV coverage than the national average.
For both the breast and cervical programmes, data is available at the PCT
(Primary Care Trust) level for coverage as a per cent of total eligible women.
These data are available for the 2012-13 financial year, and are updated
annually.
Data are also available on the coverage of HPV vaccination for 2013-14, which is
broken down by both PCT and local authority. These data are updated annually.
Where can I access screening and vaccination data?
Breast cancer screening data is available via the Health and Social Care
Information Centre (HSCIC) here. Cervical cancer screening data is available via
the HSCIC here. HPV vaccination data is available via Public Health England
here.
Questions to consider:
• Is everyone that is eligible for a vaccine or screening test in my local area receiving the appropriate test/vaccine?
• If applicable, why is uptake of screening programmes/vaccines particularly low in my area?
• What steps are being taken by local NHS leaders to encourage greater uptake of screening and vaccination?
About the Cancer
Campaigning
Group
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About the Cancer Campaigning Group
The Cancer Campaigning Group
is a coalition of around 60
national cancer-related
charities
We represent service providers,
research, advocacy and
campaigning groups
We were founded in 2002 to
campaign for an update to the
2000 NHS Cancer Plan
Our aim is to campaign for
improved cancer policy and
services in the areas of: public
health and prevention; early
diagnosis; treatment and
services; survivorship;
commissioning; and research
We have eleven corporate
sponsors that support our work
We currently focus our activities
in England only
Our Cancer: Shifting Gears report
In 2014, we developed a headline policy report, Cancer: Shifting Gears –
bringing England’s cancer outcomes in line with the best in Europe.
We called on the new Government to name cancer as a priority for the
NHS and to deliver three urgent actions:
A five-year strategic plan for improving cancer with an annual update
Continued improvement in the scope and scale of data collection, using
data to drive improvements in research and commissioning
The design and delivery of integrated cancer services that are
coordinated around the needs of patients
Our report also includes our vision for how to build upon and protect progress made in cancer for the long-term in the
areas of: prevention and public health; screening; awareness and early diagnosis; treatments services and commissioning;
survivorship; and research.
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How to contact us
If you would like further details on any
of the information in this toolkit, or
would like to contact the Cancer
Campaigning Group for any other
reason, please do not hesitate to get
in touch via [email protected]
Do please follow us on Twitter on
@_CCG, where throughout 2015, we
are tweeting out key facts from our
Shifting Gears report.
This toolkit has focused on statistics
for all cancers. However, our 60 strong
membership are experts in their own
areas of cancer, with some focusing on
specific cancer, and others on a
specific demographic of people.
To contact any of our individual
members, please click on the logos
overleaf to be taken to their website,
where you can find their contact
details.
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Our members
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Our supporters
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References
1 Maddams J et al. ‘Cancer prevalence in the United Kingdom: estimates for 2008’. British Journal of Cancer 2009; 101:541-7. Avaliable online via:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2720244/
2 Cancer Research UK, Cancer incidence by age, January 2014. Avaliable online via: http://www.cancerresearchuk.org/cancerinfo/cancerstats/incidence/age/
3 Cancer Research UK, Cancer statistics: key facts – all cancers combined, May 2014. Available online via: http://publications.
cancerresearchuk.org/downloads/Product/CS_KF_ALLCANCERS.pdf
4 YouGov, Cancer Britons most feared disease, August 2011. Available online via: https://yougov.co.uk/news/2011/08/15/cancer-britons-most-feareddisease/
5 Macmillan Cancer Support, UK Cancer Survival Rates “Stuck in the 1990s” says Charity, March 2015. Available online via:
http://www.macmillan.org.uk/Aboutus/News/Latest_News/UKCANCERSURVIVALRATESSTUCKINTHE1990SSAYSCHARITY.aspx
6 Cancer Research UK, Cancer Stats Report: Teenage and young adult cancer, 2013. Available online via:
http://publications.cancerresearchuk.org/publicationformat/formatstats/tya-report.html
7 NHS Choices, Reducing your risk of cancer, September 2014. Available online via: http://www.nhs.uk/conditions/Cancer/Pages/Introduction.aspx
8 National Cancer Intelligence Network, Awareness & Early Diagnosis. Available online via:
http://www.ncin.org.uk/cancer_type_and_topic_specific_work/topic_specific_work/awareness_early_diagnosis
9 APPG on Cancer, Cancer across the Domains: A vision for 2020, December 2014. Available online via:
http://www.macmillan.org.uk/Documents/GetInvolved/Campaigns/APPG/A-vision-for-2020-report.pdf
10 Macmillan Cancer Support, UK Cancer Survival Rates “Stuck in the 1990s” says Charity, March 2015. Available online via:
http://www.macmillan.org.uk/Aboutus/News/Latest_News/UKCANCERSURVIVALRATESSTUCKINTHE1990SSAYSCHARITY.aspx
11 Quality Health, Cancer Patient Experience Survey 2014 National Report, September 2014. Available online via:
https://www.quality-health.co.uk/resources/surveys/national-cancer-experience-survey/2014-national-cancer-patient-experience-survey/2014-nationalcancer-patient-experience-survey-national-reports/688-2013-national-cancer-patient-experience-survey-national-report-pdf/file
12 NHS England, Statistics on Waiting Times for Suspected and Diagnosed Cancer Patients Q1 2014-15 Key Points – Provider Based. Available online via:
http://www.england.nhs.uk/statistics/wp-content/uploads/sites/2/2014/08/Cancer-Waiting-Times-commentary-Q1-2014-15-provider-based-data.pdf
13 NHS Choices, Breast Cancer Screening, January 2015. Available online via: http://www.nhs.uk/Conditions/breast-cancer-screening/Pages/Why-itsoffered.aspx