Information for Patients
We have created a central resources hub for Health Professionals which hosts all of our CRUK resources and further materials to help with managing the pandemic. We are updating the information as guidance changes. There is also a page specifically for patients on our about cancer hub.
GP practices in Wales can still register for the National Cancer Diagnosis Audit 2019 using the link below.
The audits in England and Scotland are now closed and no longer open for registration.
The National Cancer Diagnosis Audit (NCDA) seeks to improve how cancers are diagnosed in the UK. The audit uses data provided by patients and collected by the NHS as part of their care and support. It looks at how patients are diagnosed with cancer, including which symptoms they report, how often they go to see their GP, what tests they have done, when they are referred and when they find out about their diagnosis.
The NCDA helps us to better understand what good practice already exists, as well as where changes may be needed to improve care and, ultimately, diagnose cancers at an earlier stage.
“I was diagnosed with my cancer extremely quickly, which I am sure made the whole process slightly easier to deal with. I suspect with a delayed diagnosis the outcome might have been very different.” Jennifer, patient representative for NCDA
You can find more detailed information for patients 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 report on things like waiting times (how long it takes for a patient to be seen and/or treated after being referred), diagnosis and treatment. But for most cancer patients, their journey starts with a visit to their GP. Very little is known about this part of the patient journey, because there is no national data collection for cancer that includes information from GPs.
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 things like how many times a patient came to see their GP before being referred to a specialist, what symptoms they reported, what tests the GP ordered, and when the patient was referred to a specialist.
The information GPs provide is combined with information from the Cancer Registry to understand the whole patient journey 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.
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, this audit will look at cancers diagnosed between 1st of January and 31st of December 2018. In Scotland, this audit will look 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 Registry1, which routinely collects data on most cancer patients. 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. They sign up for the audit and are then asked to provide information about patient journeys before referral to specialist services. The table below has details of what information is being collected from GPs and why:
|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 symptoms 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|
All information collected for this audit is kept safe within the NHS and we have strict data security processes in place for this project.
In England and Wales, information 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 Welsh patients). GPs sign up to the audit and receive a secure login and password. They are then given a list of patients from the Cancer Registry and can enter and submit data via the secure online portal.
In Scotland, information 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 NHS Scotland), who send out and receive the forms and securely store all data linked to this project.
The information collected in this project is used to improve cancer services in a number of ways:
GPs who took part in previous rounds of this project told us the value of reflective practice when they were entering the data. For example, one GP noticed a pattern in symptoms commonly reported by patients who then later got diagnosed with cancer and they changed their practice through considering these symptoms as a potential cancer requiring immediate investigation.
The audit also helps us to understand where and why patients 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.
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. In the last round of this audit, the audit findings led to many changes to practice processes, for example:
More efficient referral procedures.
Earlier referrals for tests.
Better information for patients about cancer screening and cancer tests.
New follow-up processes for cancer screening programmes.
Such changes could ensure cancer is diagnosed at an early stage, and is more likely to be treated successfully.
Local and regional healthcare organisations, such as Clinical Commissioning Groups (CCGs) and Cancer Alliances, are also issued with feedback reports. These reports summarise the local data and findings to help understand differences locally between services, and improvements needed at local and regional levels.
The data collected in this project will also be analysed in detail 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 we can tackle them)
The audit uses data from cancer patients collected as part of their routine care to better understand how cancers are diagnosed. The use of your data could lead to positive change in how cancers are diagnosed in the future.
As a cancer patient, you can support the audit by spreading the word and asking a GP, nurse or manager at your practice if they are taking part in this audit. If they aren’t, you could recommend that they take part, or talk to the Practice Patient Group and suggest they encourage the practice to participate.
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 have the right to object. This will only be necessary if:
- You were diagnosed in the timeframe selected for this audit (England/Wales: Jan – Dec 2018; Scotland: Oct 2018 – Sep 2019)
- Your GP practice has chosen to take part (if you are unsure whether your practice is taking part, you can speak to your GP, nurse or receptionist)
If you are concerned about how your data is being used and would like to object to your data being processed in this audit:
- In England and Wales, 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.
We’re now on twitter.
For questions and queries about the NCDA