Information for Patients
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Find out more about key insights from the first NCDA, which looked at patients diagnosed in 2014
Cancer Research UK’s ambition is to see 3 in 4 people survive their cancer by 2034. To help achieve that goal the National Cancer Diagnosis Audit (NCDA) seeks to improve how cancers are diagnosed in the UK. The NCDA helps us understand where good practice already exists in cancer diagnosis, as well as what changes may be needed to improve care and, ultimately, diagnose cancers at an earlier stage.
The audit uses data provided by patients and collected by the NHS as part of their care and support. It looks at how people are diagnosed with cancer, including which symptoms they report, how often they go to see their GP, what tests they have done, when and how they are referred and when they find out about their diagnosis.
You can find more detailed information below.
Getting cancer diagnosed at an early stage, when treatment is more likely to be successful, can make a real difference. To understand how cancers are diagnosed, what works well and where improvements could be made, we need to look at what happens in the period leading up to when someone is diagnosed with cancer.
Hospitals in the UK routinely monitor and submit data on cancer waiting times including how long it takes for someone to be seen, diagnosed and treated after being referred. But for most people diagnosed with cancer, their journey starts with a visit to their GP. Very little is known about what happens in primary care before a referral, because there is no national data collection for cancer that includes information from GPs prior to a cancer diagnosis.
The NCDA seeks to fill this gap by asking GPs to provide information about what happened in the leadup to a cancer diagnosis. The audit looks at:
- How many times someone same to see their GP before being referred
- Symptoms they reported
- Tests the GP ordered, and
- When and how they were referred to a specialist
The information GPs provide is combined with information from National Cancer Registries to understand the whole pathway to cancer diagnosis: from noticing symptoms and going to see the GP, to getting a final diagnosis in specialist care. This helps us to understand what good practice already exists, and can uncover unnecessary or unwarranted delays in cancer diagnosis, which should be addressed to improve care.
The information collected in this project is used to improve cancer services in a number of ways:
- GPs tell us the learning starts while reviewing cases for the audit. For example, one GP noticed a pattern in vague symptoms commonly reported by patients who then later got diagnosed with cancer. This GP changed their practice as a result, and now considers these symptoms as requiring immediate investigation.
- Each GP practice that takes part in the audit receives confidential, tailored feedback reports, as well as resources and support to help interpret the audit findings and plan changes to improve care where necessary.
- The audit also helps us to understand where and why someone might delay going to their doctor, so that we can help avoid those delays by reducing barriers and encouraging people to see their GP if they notice any unusual changes to their body.
In the last round of this audit, which looked at cancers diagnosed in 2014, findings led to many changes to practice processes, which ultimately improve care and could result in earlier cancer diagnosis. Changes included:
- Improved referral processes, to ensure people are referred as soon as possible
- Sending people for tests to ensure symptoms are investigated, a cancer referral is made and they are diagnosed at the earliest stage possible
- Easy to understand information about cancer screening and diagnostic tests to support people to make informed decisions
- Establish follow-up processes for people who have not accessed cancer screening to ensure they have received screening invites and have all the information they need to make an informed choice
Such changes could ensure cancer is diagnosed at an early stage, and is more likely to be treated successfully.
Beyond GP practice level:
- Local and regional healthcare organisations, such as Clinical Commissioning Groups (CCGs), Health Boards and Cancer Alliances, also receive feedback reports. These reports summarise local data to help understand differences between services, and improvements needed at local and regional levels.
The data collected are analysed at national level to help answer important research questions. For example, data from the NCDA helps to understand what kinds of symptoms are linked to which cancers, how pre-existing illnesses can affect cancer diagnoses, and how and why delays happen (so that they can be addressed)
All cancer types diagnosed in the relevant time period are eligible for the audit, with the exception of non-melanoma skin cancer as there is a very high cure rate for these cancers.
- In England and Wales, the most recent cycle of NCDA looked at cancers diagnosed between 1st of January and 31st of December 2018.
- In Scotland, the audit looked at cancers diagnosed between 1st of October 2018 and 30th of September 2019.
- In Northern Ireland, a small number of GP practices is taking part in a pilot project looking at cancers diagnosed in 2018.
Some data for this audit comes from the Cancer Registry, which routinely collects data on most people with cancer. Data from the Registry that is used in this audit includes: NHS/CHI number, Age, Gender, Cancer type, and Diagnosis date.
But most of the data for this audit comes directly from GPs. The table below has details of what information GPs submit to NCDA and why this information is important to better understand pathways to diagnosis:
|Information collected||Why is this information being collected?|
|Date patient first observed signs or symptoms||To understand how much time passes between a patient noticing a symptom and seeking help|
|Date patient first presented with a symptom||To understand when patients first report signs/symptoms|
|Place patient first presented with a symptom||To understand where patients first report signs/symptoms (at the GP surgery, during a home visit, in A&E etc.)|
|Presenting signs and symptoms||To understand what kinds of symptoms and signs are being reported by patients and how these link to different cancer types|
Patient characteristics, such as:
- Language ability
- Living situation
- Other pre-existing illnesses
|To understand if and how things like language and communication difficulties, living arrangements and other conditions affect cancer diagnosis to help tackle inequalities in healthcare|
|Types of diagnostic tests ordered by the GP||To understand what kinds of tests and investigations GPs use when they are exploring underlying reasons for patients' symptoms, and to understand the impact of such tests on cancer diagnosis [Note: the audit only collects information about the types of tests ordered by GPs (for example if a blood test or an x-ray was ordered), it does not collect information about test results for individual patients]|
|Number of consultations at GP surgery before referral to a specialist||To understand how many times patients go to see their GP before they are referred, and to understand why patients sometimes see their GP multiple times before referral|
|If/how the GP ensured a patient was safety netted (for example, ensuring that a patient knew why they needed a test, telling a patient to come back if symptoms did not improve, or making a note of the date a test result is expected and needs to be followed up)||To understand how GPs ensure patients do not slip through the net and are followed-up appropriately (for example after having a test or after having been sent to a specialist), and to understand how GPs ensure that patients have enough information and support to understand next steps and what is required of them [Note: this is called ‘safety netting’]|
|Date(s) the GP made a referral and how many referrals the GP made for a patient||To understand when (and how often) GPs refer patients to specialist care|
|Type of referral(s) made by GP, including type of emergency referral (if applicable)||To understand how GPs refer patients with symptoms that could be a sign of cancer, as there are several ways in which a referral can be made – some more urgent than others|
|Date a patient is first seen by a specialist||To understand how long it takes for a patient to be seen by a specialist after referral from the GP|
|Date a patient is told of their cancer diagnosis||To understand how long it takes for a patient to get their diagnosis [Note: NHS England has recently introduced a new target that patients should receive their diagnosis within 28 days of being referred to a specialist]|
|Whether, with hindsight, the GP thinks there was any avoidable delay in the patient journey||To pinpoint issues and bottlenecks that need to be explored further in order to speed up cancer diagnosis and improve care|
 Find out more about cancer registration:
Northern Ireland: https://www.qub.ac.uk/research-centres/nicr/
In England and Wales, data for this audit is collected from GPs via a secure online system within the NHS network. The system is managed by Public Health England (together with Public Health Wales for patients in Wales). GPs sign up to the audit, are securely verified, and then receive a secure login and password. Only authorised users are given a list of individuals with cancer from the Cancer Registry and can enter and submit data via the secure online portal.
In Scotland, data for this audit is collected from GPs on forms sent directly to GP surgeries via secure NHS mail. The data collection in Scotland is managed by Information Services Division Scotland (part of Public Health Scotland), who send out and receive the forms and securely store and manage all data linked to this project.
The audit uses data collected by GPs and hospitals as part of routine care. If you prefer for your data not to be used in this audit, you can choose to opt out.
The data collected will only be for people diagnosed with cancer during a specific timeframe (England/Wales/NI: diagnosed Jan – Dec 2018; Scotland: diagnosed Oct 2018 – Sep 2019). Data will only be collected on people whose GP practices have chosen to participate and for no other individuals.
If you were diagnosed with cancer within that period and you prefer for your data not to be included, then you can opt out, which will mean no information about you will be included in the project.
- In England, Wales and Norther Ireland, please contact your GP practice directly. You do not need to give a reason and your care will not be affected. Your GP practice will inform the NCDA team and ensure no data relating to you or your care is used in this audit.
- In Scotland, please read the information for patients in Scotland below.
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