Classifications and measurements of pancreatic cancer progression

Dear Leo Pritchard,
 
Thank you for your emails of 10 August 2024 in which you requested
information under the FOI Act from NHS England. Please note that we have
aggregated several of your requests due to their similarity.
 
Your requests were:
 
“I am writing to request information under the Freedom of Information Act
2000 regarding the classifications and measurements used by NHS England to
describe or ascertain the progression of pancreatic cancer.
Please provide the following information:
1. Which classifications and categories are currently used to describe the
advancement of pancreatic cancer in patients?
2. Which metrics and measurements are currently used to describe or
ascertain the advancement of pancreatic cancer in patients?
3. What other types of evidence, apart from any already described, are
used to ascertain the advancement of pancreatic cancer in patients?
4. Have you recently changed any of the classifications and measurements
you use? If so, what were these changes?
5. Are there any planned changes to any of the classifications and
measurements you use? If so, what are these planned changes?
6. Is any of the information I requested, or any other information
detailing how NHS England ascertains or describes the advancement of
pancreatic cancer, available publicly online? If so, where can I find this
information?"
And
 
“I am writing to request information under the Freedom of Information Act
2000 regarding mortality statistics and information on pancreatic cancer
patients in NHS England.
Please provide the following information on pancreatic cancer cases within
NHS England:
1. The percentage of patients diagnosed at each stage.
2. The percentage of patients who have died as a result of having
pancreatic cancer for those diagnosed in each stage of the disease.
3. The five-year survival rate of patients diagnosed in each stage of the
disease.
4. The median survival time of patients diagnosed in each stage of the
disease.
In addition, please also provide the following information:
5. When or the conditions in which clinicians consider pancreatic cancer
has become untreatable and terminal.
6. When or the conditions in which clinicians consider that pancreatic
cancer patients have become more likely than they are not to die as a
result of having the disease.
7. The key prognostic factors and developments that influence survival
rates in pancreatic cancer patients.
8. Is any of the information I requested, or any related information or
statistics, available publicly online? If so, where can I find this
information?”
 
And
 
“I am writing to request information under the Freedom of Information Act
2000 regarding statistics on pancreatic cancer cases within NHS England.
Please provide the following information from data on pancreatic cancer
cases in NHS England over the period 2013-2023, inclusive:
1. The number of people diagnosed with pancreatic cancer each year in this
period.
2. The median number of pancreatic cancer diagnoses made per year in this
period.
3. The number of people who died as a result of having pancreatic cancer
each year in this period.
4. The median number of people who have died as a result of having
pancreatic cancer per year in this period.
5. The percentage of all cancer cases represented by pancreatic cancer
cases in this period.
6. The percentage of all cancer-related deaths represented by pancreatic
cancer-related deaths in this period.
7. The lower quartile, median, upper quartile, interquartile range,
standard deviation, mean, and mode of the times from patients being
diagnosed with pancreatic cancer to them dying as a result of having it in
this period.
8. The 1-year, 2-year, and 5-year survival rates of applicable (where
sufficient time has passed to know these rates) patients diagnosed with
pancreatic cancer in this period.
9. The percentage of patients diagnosed with pancreatic cancer in this
period who have died as a result of having the disease.
10. Is any of the information I requested available publicly online? Are
any other related statistics or information on pancreatic cancer cases in
NHS England available publicly online? If so, where can I find this
information?”
 
And
 
“I am requesting information under the Freedom of Information Act 2000
regarding the prevalence of pancreatic cancer within different groups of
people within NHS England from 2013-2023 inclusive.
Please provide the number of people, per capita, who were diagnosed with
pancreatic cancer in the following groups from 2013-2023 inclusive:
1. Those of different age groups. Ideally, these age groups would be 0–10
years old, 11–20 years old, 21–30 years old, et cetera.
2. Those of the different racial and ethnic groups used by NHS England.
3. Smokers and non-smokers.
4. Those who have a relative who has had pancreatic cancer before and
those who do not.
5. Those who consume three or more units of alcohol per day on average and
those who do not.
6. Those who are severely obese, obese, overweight, of a healthy weight,
and underweight.
7. Those of the male sex and those of the female sex.
8. Those with a history of pancreatitis and those without a history of
pancreatitis.
9. Those with diabetes and those who don't have diabetes.
10. Is any of the requested information available publicly online? Is any
other information on pancreatic cancer rates in different groups available
publicly online? If so, where can I find this information?”
 
And
 
“I am requesting information under the Freedom of Information Act 2000
regarding cancer survival rates and incidence.
Please provide me with a spreadsheet file containing the following data
for all types of cancer on which you hold records within NHS England since
2014:
1. The median number of diagnoses per year
2. The median number of deaths caused by the type of cancer per year
3. The 1-year survival rate
4. The 2-year survival rate
5. The 5-year survival rate
6. The 10-year survival rate
7. Median age of patients at the time of diagnosis
8. Median age of patients at the time of death caused by the type of
cancer”
 
And
 
“I am requesting information under the Freedom of Information Act 2000
regarding statistics on the ages at which people with pancreatic cancer
are diagnosed with the disease and die from it.
Please provide me with the following data on people with pancreatic cancer
within NHS England since 2014:
1. The first quartile, median, third quartile, interquartile range, mean,
mode, standard deviation, and skewness of the age in years at which
pancreatic cancer patients were diagnosed with having the disease.
2. Of those who have died as a result of having the disease, the first
quartile, median, third quartile, interquartile range, mean, mode,
standard deviation, and skewness of the age in years at which they died as
a result of having the disease.”
And
“I am requesting information under the Freedom of Information Act 2000
regarding statistics on the duration of each stage of pancreatic cancer in
patients within NHS England.
Please provide the first quartile, median, third quartile, interquartile
range, mean, mode, standard deviation, and skewness of the duration (in
days) of each stage of pancreatic cancer for all cases within NHS England
on which you hold records. Moreover, please tell me if any of this
information is available publicly online and, if so, where I can find it.”
 
And
 
"I am seeking anonymised patient data collected by NHS England on those
with each stage of pancreatic cancer as well as those without it to
analyse the relationships between different variables and pancreatic
cancer.

I want the following anonymised patient information, with labels recording
whether the patient had pancreatic cancer when the information on them was
recorded and, if so, which stage it was in.
1. Demographic information, e.g. age, sex, ethnicity, BMI, et cetera.
2. Medical history, e.g. family history of pancreatic cancer, pre-existing
conditions like diabetes, chronic pancreatitis, or obesity, et cetera.
3. Lifestyle factors, e.g. diet, exercise levels, smoking, alcohol
consumption, et cetera.
4. Laboratory results, e.g. blood glucose levels, liver function tests,
tumour markers, et cetera.
5. Signs and symptoms, e.g. jaundice, weight loss, abdominal pain,
steatorrhoea, et cetera.
6. Imaging results: data from scans, e.g. CT, MRI, ultrasound, et cetera.
7. Vital signs: blood pressure, heart rate, respiratory rate, temperature,
et cetera.
Please tell me if NHS England holds such information. If so, please tell
me if this information is publicly available online (and, if so, where),
or else provide the information in your response. If you provide the
information in your response, please provide it in one or more spreadsheet
files. Doing so will make it easier to examine the information."
 
NHS England may hold information relevant to your request.  However, we
are unable to begin processing your request without further
clarification. 
It may help if we explain that the NHS in England is not one single
organisation. Rather, it is made up of multiple different organisations of
differing sizes, and operate at central, national, regional, and local
levels each with its own roles and responsibilities. 
  
NHS England is a single regulatory body responsible for overseeing the
funding, planning, delivery, transformation, and performance of NHS
healthcare in England. It is also responsible for providing unified
national leadership for the NHS.  
 
NHS England does not directly deliver clinical services. Any recorded
information NHS England may be able to provide in response to an FOI
request will generally relate to the functions we perform. 
  
For more information on the functions carried out by NHS England and the
types of information we hold, please visit our [1]website; for further
information on the NHS, its structure and other NHS organisations please
refer either to our [2]website or the NHS [3]website. 

The FOI Act gives you the right to ask any public sector organisation for
the recorded information they have on any subject. You can ask for any
information you think a public authority may hold; however, the right only
covers recorded information which includes information held on computers,
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If a public authority does not hold recorded information relating to your
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Section 1
 
Under Section 1(3) of the FOI Act, an authority is not obliged to comply
with an FOI request when it reasonably requires further information in
order to identify and locate the information requested. 
 
As such, we would be grateful if you could clarify: 

• What specific recorded information you are seeking from NHS England;
and

• What timeframe your request relates to (in the format of
[day/month/year] to [day/month/year]).

Under Section 16 of the FOI Act – the duty to provide advice and
assistance – please be aware that you may already have access to some of
the data you are seeking. We routinely publish [4]cancer registrations
statistics, which includes details on [5]cancer mortality, [6]incidence by
main cancer group, and [7]cancer incidence by gender and age.
Please be assured we are keen to assist with your enquiry. However, we
cannot guarantee that Section 12 or any other exemptions under the FOI act
will not apply to any further information requested. 
 
Do not reply to this email: rather, please resubmit your request,
addressing the clarification points raised above, to [8][NHS England
request email] quoting your reference number as it appears in the subject
bar.

Yours sincerely,

Freedom of Information
NHS England

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