NCIN Conference 2014 (Day 2)

The second day of the conference began with me being fairly grumpy!  The queue to get into the dining room for breakfast was stretching out to reception!  After 20 minutes of waiting, I gave up.  I only wanted a croissant and some fruit but it wasn’t to be as I was keen not to miss any of the conference… but no breakfast = grumpy Anna!  Hilton Hotels get your act together!


Plenary 3 – Global cancer surveillance: opportunities and challenges

Professor Julia Verne
Director of Knowledge and Intelligence Team SW, Public Health England

Plenary session in the memory of Brian Cottier (1951-2009)

1 in 3 will get cancer
1 in 4 will die from cancer


Freddie Bray
IARC – International Agency for Research on Cancer
“World wide cancer burden”

Global cancer surveillance opportunities and challenges

Socioeconomic changes and how that impacts cancer incidence and survival.

14.1 new cases in 2012
8.2m deaths
32.5m living with a cancer diagnosis

9 cancers for majority of cancers 2/3rds of burden.

Globocan 2012 provides many graphs and examples.

The changing world – transitions
Major increases in the population coupled with increasing longevity has linked to epidemologic translations Including cancer, moving from infection related cancers toward a western lifestyle.

1 in 3 NCDs are cancers.

A great deal of information and graphs showing changes in some countries for increases in cancer and also decreases eg Japan have an increase in young people with cervical cancer. India have a reduction as marriage age is getting higher. Russia and Belarus have no screening and it has rapidly increased for cervical cancers.

Why registries are so important so we can track what is happening and measure it accordingly.

NCD agenda, of surveillance activities
Training and collaboration with cancer registries around the world. Try to ensure registries are in place to help with cancer control and also for reporting worldwide.

3 way split between high quality data, national and regional data and frequency data but 62 countries with NO data at all.

Current situation
Recognition of increasing global cancer burden.
Despite a long history of cancer registration LMIC have not developed PBCR
Link in with political agenda and tackling of NCDs

UN high level summit talks about cancer registries.
Global monitoring framework

IARC Technical Publication No 42 “Planning and developing population based cancer registration…”

Global Initiative for Cancer Registry objectives

IARC Regional Hubs for Cancer Registration in LMIC

Good data collection and methods of using and sharing data effectively.

Dr Milena Sant
Instituto Tumori, Italy
EUROCARE 5 – survival of cancer patients in Europe

21 countries with a national registry inc 7 countries from eastern Europe.

50% of European populations including over 10m cancer cases.

Next steps for Eurocare

Reduce inequalities,
Treatment is not only solution for control
primary prevention, early diagnosis, accurate diagnosis – are all factors

Sara Hiom
Cancer Research UK
The International Cancer Benchmarking Partnership’s Impact on Policy and Practice

What is the ICBP? – unique collaboration in terms of countries, international collaboration involving policy, research, cancer registry and clinical professionals at a global view.

13 jurisdictions in 6 countries
including Scotland for module 5

What are they looking at?

  • breast, lung, colorectal and ovarian

5 modules

  • Epidemiological benchmarking study
  • Public awareness, attitudes and beliefs
  • The role of primary care and healthcare systems
  • Variation in patient,diagnostic and treatment time intervals and routes to diagnosis
  • Data comparability and early deaths

Focus increasingly on the first year post diagnosis. Why are we not getting more patients beyond the first year survival which we can also see affects the 5 year survival statistics.

Module 1 – survival and stage table.

It’s not only early diagnosis that came out from this module and data comparison. It was also access to services and quality of treatment.

Module 2 – awareness and beliefs
Looked at differences in population. In the UK were our people less aware of the signs and symptoms?
Findings: ABC measure was born and has been used for surveying populations.
Generally speaking similar levels of awareness across all ICBP countries.
Generally low awareness across all countries of the increase factor of age.
UK – stood out the reluctance to visit a GP and wasting the Dr’s time. Elements of embarrassment i coming forward in the UK.

Be Clear on Cancer campaign to try to change the belief of wasting GP’s time or embarrassment.

Module 3 – role of primary care
Were there fundamental differences in systems?

  • Progress 2895 GPs responses to online survey and analysis complete in 11 jurisdictions.

Papers are about to be published.

Latest (unpublished) international data suggests that GPs in England:

  • Are less likely to send a patient for tests
  • Report having among the lowest access to specialist advice
  • Tend to feel more strongly about protecting their patients from over investigation and preventing a secondary care overload.

We need to look at the cost structure to overcome this aspect.

Module 4 – patient, GP and specialist intervals
Still underway…

  • Looking at via surveys patients, GP and specialist.
  • Looking at length of time between first noticing symptoms and time to GP and referral.
  • Collecting this information across the cancer pathway in 10 jurisdictions and comparing each of them.
  • Anticipated impact is focus in on areas with longest interval.

Module 5 – data quality simulation
Variations in cancer registry practices affect the comparability of key data used in cancer survival analyses

Look in much more depth of the differences in registries.

Should have a key impact on the best practices and developing tools that look at different factors.

Module 5.2 – short term mortality and co-morbidity
Not started yet…

Building on the legacy of ICBP.  Lots of questions have left unanswered but needs to continue and keep it up on the agenda. Perhaps political policy will assist keeping it on the agenda particularly as comparing with other countries.


Reducing Health Inequalities
Chair: Dr Tony Moran
Director of Research and Intelligence (North West) at Public Health England


Therese Lloyd
Prostate Cancer UK
Lifetime risk of diagnosed with and dying from prostate cancer in different ethnic groups

Process of finalising a publication but as yet unpublished.

What do we know?

  • 1 in 8 men in the UK will be diagnosed with prostate cancer at some stage in their life.

We know there are ethnic differences but don’t know how they translate into incidence and mortality.

Data and analysis
Few date issues that meant we weren’t always able to tell the ethnicity for over 1/4 of the data fields.
Total numbers of deaths in the data did not match up the total number of deaths in the office of statistics.

Several analyses in each ethnic group were done.
Best estimate but also larger groups to get a true value.

Used DevCan – system US.

Major ethnic groups analysed – white, black and asian.

Mixed – were difficult to obtain clear results.

Lifetime risk is calculated as percentage and odds.

Although there is a bit of variability based on the methodology used. Consistent message that Asian men (1 in 13) are at a lower risk of being diagnosed of prostate cancer than white men (1 in 8).

Black men are at a much higher risk, although much more variability the research evidences that approximately 1 in 4.

Best estimate – White 1 in 24, Asian 1 in 44 and black 1 in 12 – dying from prostate cancer.

Looked at data from 2008-2010.

When you compare the diagnose number and deaths all groups indicate that 1/3 (across board) will die once diagnosed. Perhaps there is no difference between the aggressiveness of the disease no matter what colour skin.

Need to reach out to BME communities to be aware of symptoms.

More research is needed and collection of perfect ethnicity data is needed.


Chin Kuo Chang
King’s College London
A cohort study of mental disorders, stage of cancer at diagnosis and subsequent survival


2011 cancers has seen the largest percentage of death in the UK accounting for 30% cause of death.
For serious mental illness it’s the 2nd or 3rd cause of death.

Big gap between the general population and people with serious mental illness (‘SMI’).

Only 1 team in WAustralia investigating this.

2 research questions (looking at data 2010-2013) CRIS
early symptoms ignored or not understood. Is the stage also affected when diagnosed.

Cancer linkage

  • Cancer register to include incidence of mental disorders
  • Trajectories of cancer treatments for ppl with SMI
  • Prognosis of cancer patients with psychiatric comorbiditiy.

Extending CRIS system to Cambriddge, Imperial – UCL, Oxford and Camden & Islington.


Mark Rutherford
Research Associate, University of Leicester
Understanding deprivation and inequalities using loss in execution of life use to a cancer diagnosis (using only UK data)

Please refer to presentation


Preventing Emergency Presentations – the need for research
Chair: Stephen Duffy
Wolfson Institute

We know that emergency presentation is particularly common in some cancers such as lung and bowel. Associated with a poorer outcome and may be associated with initial treatment from wrong specialist.

Emergency Presentation is more common in older people.

We need better understanding who’s at risk and what can we do about it?

Targets for today from the interactive workshop:

What are the major knowledge gaps?
What cancer sites are most promising for intervention?
What interventions are ready for evaluation?
Not simply to replace Emergency presenting with routine presentation. We want to replace with someone presenting 6-12 months before with stage 1 or 2 cancer.
Who should take this forward?
Very much in our hands as to which teams should take these interventions forward? Research fellows? Charities?


Less Common Cancers
Chair: Jane Lyons



Lucy Elllis-Brookes
Setting the scene for rare and less common cancers


Big 4 – breast colorectal lung and prostate
Less common cancers e.g. uterous, melanoma, ovary, kidney, CUP, pancreas, cervix, multiple myeloma
Rare cancers…. even more !

Screen Shot 2014-08-18 at 15.33.40Rare and less common cancers:

Screen Shot 2014-08-18 at 15.34.58

What is NCIN doing?
Routes to diagnosis – increased look at cancer types and producing data from them 22 in 2010 and 57 in 2014.

Deprivation reports – 23 in 2008 and 37 in 2014

Site specific Clinical reference group work (recent examples)

  • vulval cancer – trends and variations by age
  • kidney cancer survival report
  • penile cancer incidence by age

What do rare and less common cancers have in common?

  • Each cancer site shows different results.
  • Different analyses will be required
  • Specialist advice (clinical and analytical) is crucial.

Oksana Kirichek
University of Oxford
Menopausal hormone therapy and risk of central nervous system tumours: a nested case – control study

Aim of study:

  • Is Hormone therapy (HT) associated with risk of brain and other CNS tumours
  • To test whether the effect of HT varies type, duration or recency of HT preparation used.
  • To assess the effect of HT exposure on the risks for all CNS tumours

GPRD General Practice Research Database

  • Holds primary and secondary data. cross linked with other databases and person specific.

Definition of cases

No significant difference in risk by tumour subtype


  • UK GPRD cohort women who had been prescribed HT
  • HT associated risks did not vary significantly cross the four main tumour subtypes examined
  • Findings from the GPRD agree with those reported previously from other studies with prospectively collected information on HT use.

Nicola Dennis
Knowledge and Intelligence Team (W Midlands)
Incidence, survival and treatment patterns for patients with head and neck sarcoma


1% of all malignancies in England are Soft tissue sarcoma
Narrowed down to head and neck the numbers are even smaller

With the very small numbers of incidence there are limited studies looking at incidence and survival rates.

Both Improving Outcome Guidance in 2004 and 2006 specifically had improvements for head and neck.
Because of the small numbers its hard to see if anything has changed.

4796 head and neck sarcomas in 1990-2010

MDT specialty – positive outcomes since the guidance was set out where we can see that there has been a significant increase in referral to the right MDT specialty.

Patient spread for surgical treatment. Data shows that there are number of trusts that might only have treated 1 patient in the entire 10 years of the study!

Kwok Wong
University of Birmingham
Risk of Adverse Health and Social Outcomes up to 50 Years After Wilms’ Tumour: The British Childhood Cancer Survivor Study

I will post a link to the presentation once available.


Plenary 4 – Delivering outcomes that matter – Panel debate with Q&A to the panel
Chair: Robert Peston, BBC’s Economics Editor

• Mr Sean Duffy, National Clinical Director for Cancer Services, NHS England
• Mr Ciaran Devane, Chief Executive, Macmillan Cancer Support
• Professor Peter Johnson, Chief Clinician, Cancer Research UK
• Dr Jem Rashbass, Director for Disease Registration, Public Health England
• Mr Andrew Wilson, Chief Executive, Rarer Cancer Forum

Ciaran Devane – Chief Exec – Macmillan
We need to move to a strategy when we think in a different way rather than the economics.

We are talking a great deal about the value of services and NHS etc rather than the value of and to the individual.

Changes in the NHS – are we spreading our resources too thinly?

Sean Duffy – National Clinical Director for Cancer NHS England
No doubt the point of contact for you within the health service should be the most important thing. We’ve not yet got it right. If we’re going to visit better outcomes then we need to tackle the first point of contact too.

We don’t wrap the system around the patients enough.

In terms of the data itself – it’s easy to look at national data and say were good at this or that. We can look at a local level. We need to create ownership of the data around the geographies to be sure their own data is better and is owned. Working collectively to gather for the greater good.

Rich national dataset that we can and must use but we haven’t yet made great inroads in it. Need to make more out of the data.

Finally, with such a rich set of data and the ability to intelligently obtain information from it. We need to get cleverer at using the data in order to year on year look at the services to ensure we can achieve the best.

Prof Peter Johnson, Chief Clinician, Cancer Research UK
Echo the good things said about NCIN and the work they do. No doubt research using the data has been saving lives for many years. We know more about how to reduce the risk of cancer and determine the best treatment and long term outcomes.
How are we going to improve further and get up and beyond the levels of other countries?

We know there are at least 10 different types of breast cancer. We know asbestos causes mesothelioma.

Key obstacles we need to address: Regulation – looking at EU regulations and ability to track patients through system and outcomes will be compromised if EU data systems come in.  We must at all costs make sure work is not held down by regulations.
Changes in the health systems recently has given us problems. Relationship with the information centre CPRD and difficulties of joining different data has given us delays and loss of capabilities in the Registry. This has stopped us doing as much as we would have liked and can achieve.

Public perception of data and it’s management has been undoubtedly damaged by This was a fundamental problem and unsettling. We have to overcome this. There have been ZERO breaches in any confidentiality of the Cancer Registry.

25% to 50% alive 10 years from diagnosis of cancer. CRUK want to bring this to 75% in the next 10 years. We need data to understand this and move forward. Stratified medicine has to understand at a detailed molecular level. We will only be able to capitalise on that if we can get the data systems right and keep them functioning.

Data is a precious life saving resource. Do not take it for granted. Fight to maintain the system that we have.

Dr Jem Rashbass, Director for Disease Regulation PHE
Worth reflecting on how we got here and what this is about  We have had earthquakes of public trust. This is YOUR clinical information that we collect and we are duty bound to look after it and my responsibility to make sure that I protect patient confidentiality.
As Peter has said the support we’ve had over the years to look after your data and you can request it’s removal from the Cancer Registry.

This is about delivering care to individuals. You’ll treat them on the basis of the stats but as we move to personal care it’ll be the molecular abnormalities that determine your outcome.

We need to maintain the public support for data collection and NCIN database that puts the potential for cancer care in this country further forward than anywhere else in the world. In the next 5 years we will have extraordinary ability to provide the most personalised cancer treatment.

Andrew Wilson, CE Rarer Cancer Forum
Current state of play for data. Clear that public feeling has been shaken. Rarer cancers are rare. Data on rarer cancers will be much more identifiable. Huge amount of exciting work going on using data for rarer cancer.

Use of data in rare cancers. Hidden cancers and less visible to the public.
Huge demand for this sort of data. Need to meet this and produce reports that are useful.

NCIN route for diagnosis project showed ongoing problems for cancer patients go far beyond those related to cancer.

We need to be much more open with the data that we hold. Ensure patient identifiable information is removed from data sets. Once this has been done the data that we have is published. Closed shop needs to go. Automate data flow around the system to ensure sticking to rules and make better use of data that we do at present.
We need to work collaboratively to come up with solutions where problems exist.

Q – How can we ensure the diagnostic experience for young people is improved?
SD – we have a first point of contact system designed 60 years ago. We need to tackle it externally and internally. Simple things needed – proactive approach to primary care. Safety netting – young person with a set of symptoms its probably the last place they want to be… be proactive and should raise a flag for tests. We have created a mechanism whereby the referral is the only route – needs to be challenged. GP should be able to make a clinical decision on the basis of facts not ask the patient to wait!
JR – We need to recognise that a missed diagnosis is one that everyone inc GP regrets. However some cancers in a young person are difficult to detect. They are rare. Symptoms and signs of a brain tumour are subtle. No of patients that a GP sees with those every week, it’s difficult to identify. Where the value of the dataset comes not from surveillance but that we should learn from every case. How do we raise our game?
SD – there are risk assessment tools that allow patients to flag up symptoms.
You can start to identify in an active way any of the GP patients that maybe at higher risk using some of these tools and data set.

RP – GPs feel they don’t have the level of control and responsibility due to other constraints about referring and cost.
CD – The guidance at the moment is written to say send us these patients but often the ones that don’t fit that mould are overlooked because they don’t fit that picture.
Be Clear on Cancer – enables the patient population community to know what to ask for and what symptoms.
PJ – I think there is a massive amount of data that tells us a lot about patterns of referral. And the outcomes from this. Feeding the information back into the system is incredible important.

Q – As a researcher the amount of time it takes to get access to data approved throughout he current regulatory approval system. Is there a strategy to help researchers get access to the data and make use of them in a more timely way.
JR – Richard’s experience shared by others. We’ve tied ourselves in knots frightened about releasing data and protecting the confidentiality. We need to recognise what you want us to do. Inside PHE we are trying to deal with it and create the structures to manage the data release. The demand for the data is large. We have disadvantaged ourselves by separating the people who pull the data and those who analyse it.
I think we do need a clear process of maintaining that public confidence.
Complex area but we need to be better at giving data confidentially.

RP – What is your attitude to selling data?
JR – Govt data is not available. Not a resource from which to make money. The data that we collect on you is for the social good BUT need to protect patient identifiable.
Financial constraints on delivering personalised health care will not be cheap. We need to enter into the discussion with industry to pay a fair price and benefit.

Q – How big a threat to our ability to gather and use data would changes be that require consent to use the data each time? This would negate the value of a Cancer Registry.
A – It’s a risk and will undermine everything that we’re trying to do. We need our MPs to change this view and to ensure that this change does not take place.

Q – One of the ways that we can prove that consenting to use of data is to show the public how the data can be used for good and can be done.
CD – Hugely disappointed when cancer networks became unpopular. People didn’t believe in coordination. We need to make use of the strategic clinical networks. Make sure the patient voice is embedded in the senates, and clinical settings. We need to be more assertive and move together.
JR – Some basic processes. Transparency and openness. Audit – any patient can approach and ask who looked at my data. Every patient who wishes can have access via a patient portal like the brain hub. An absolute right of opt-out. No process that makes it difficult to do that. I think that is what is needed to protect the data set that we’ve got and we need the community to act and educate the wider audience.

Q – Despite significant Govt rhetoric influencing the NHS work we need to collect ht patient voice at and put it back into the system. How can we go about changing this?
SD – I believe in the patient voice entirely. Within NHS England the patient survey is the most successful at influencing. We need to make more use of it.

Q – NCIN was founded in 2008 with mission to provide the UK with the best intelligence in the world. What does the panel think the new mission for the NCIN should be to take us forward in th next 5 years.
JR – We need to move somewhere else. I want a low level objective to make the patient and the clinician at the centre of the data store. So you can ask where am I in the system? You can check you’re getting the best and ensure that no cancer is left out. Patients and the public at the centre for cancer.

RP – When you collect data that is at a granular level are you recording it?
JR – Yes we are. We need to know what receptor it has. If it responded to medication. etc etc. Absolutely linking it into all sorts of datasets to look at a much bigger picture and make it more personalised.
PJ – 4 years of outstanding progress and 1 year of challenge. I think it’s time to reaffirm the quality of the data and now we need to see it and put it in front of the people who generated it, people, public, patients, clinicians etc. Want to see equally superb access to it.
CD – based on outcomes not last year’s data.

Q. – When a patient comes into hospital with advanced cancer, the patient has rarely been recording if they’ve been attending primary care prior to emergency presentation?
Should we incentivise GPs by giving them QoFs? Perhaps to embed good practice for a period of time.
PD – Both London integrated cancer centres have been involved in looking at attendance of A&E and that will give us some answers about the gaps. I do think there is something about incentivising a better pathway of care. We need to use everything in our power to make the system work.

NCIN Conference 2014 (Day 1)

The NCIN (National Cancer Intelligence Network) is a UK-wide initiative, working to drive improvements in standards of cancer care and clinical outcomes by improving and using the information collected about cancer patients for analysis, publication and research.

When I was first aware of the NCIN, their goal was “To develop the best cancer information service of any large country in the world – by 2012”.

Because of the work they continue to do, UK clinicians, medics, researchers, NHS purse holders, pharma, charities and, of course, patients are now able to draw on an incredible amount of useful data-sets.  This data enables measures to improve outcomes, drug development, research projects, awareness and own patient care.

This year I was honoured to be invited again to attend the NCIN Conference with a bursary place and below is a summary from my notes at the Conference.  Wherever available I have added links to presentations.

Cancer Outcomes Conference 2014 – the power of information
Sponsored by Cancer Research UK and Macmillan

Chris Carrigan
Director of NCIN Public Health England (PHE) 

Chris opened the conference and welcomed those attending.  This year’s conference attendance is larger than ever before with over 570 people attending.  With national and international spread from primary to end of life, charities and patients.

Chris (@C_Carrigan) wrote a blog at the start of the conference on twitter on how bringing people together can improve cancer outcomes – read here

Harnessing the power of information to deliver quality and innovation in cancer surveillance, services and outcomes

Chair: Prof Brian Ferguson
Knowledge Transfer and Innovation Director at PHE
“Innovation at the heart of Public Health England.

Kris Hallenga
Coppafeel! @krispop @coppafeelpeople
Ensuring everyone stands the best chance of surviving breast cancer

Kris#NCIN2014, Let’s talk boobs

Kris ‘story’ is well documented not least on an incredible documentary that has just been shown on TV “Dying to Live“.

Kris was 22 when she noticed lump.  She ignored for a long time. Eventually went to GP and told more likely to be hormonal.  Went travelling and noticed the lump was getting bigger. Returned to GP. Told nothing. Mum got involved. Returned to GP. 8 months after first going to GP was referred and told breast cancer and spread to spine.

1 in 15,000 chance of getting breast cancer under 25.

“You beat the odds in getting the disease and can beat the odds to get rid of cancer.”

2 months into treatment Kris researched why she didn’t know more about cancer at a younger age and what to expect.

She knew she couldn’t change her diagnosis but she could make it better.  Or as Kris said “You can’t polish a turd… but you can roll it in glitter…”

She kept hearing “Early detection is the best form of defence.”  Why wasn’t there breast cancer awareness in schools, universities, 6th form colleges?  Surely that’d lead to earlier detection.

So Kris thought about where she could reach these young people.   Armed with CoppaFeel! stickers set off to a festival.  Whilst facepainting with her twin sister people started approaching and talking about boobs.  Talking about breast cancer.  Talking about checking yourself.

CoppaFeel! are now a regular set up at music festivals, university campus and many other locations filled with younger people.

As well as Kris and her sister talking about boobs, there are now the Boobettes – young women who’ve been diagnosed with Breast Cancer.  They go into and talk at schools and events about their experiences and awareness and early diagnosis.

Kris has asked “What does BC mean to young people?” and got these answers (amongst others) – life-stopping, turmoil, depressing, threatening, damaging… not good and words that put you off from checking your boobs.
It is a very treatable disease if diagnosed early.

1 in 3 are diagnosed with cancer.  Early diagnosis is key.  #rethinkcancer is a campaign to bring cancer education into schools, colleges and universities.  “I know it will help and I know they want to know it… I’ve spent the last 5 years speaking with them.”

Put an end to late diagnosis of cancer.

Kris Rethink Cancer

The stats of tomorrow are the young people of today… it can happen to young people. It should go through the mind or every GP and medical professional out there.

“If you have influence please use it. If you have colleagues please pass the message on. If you have boobs, please check them.

Think boobs.”


Prof John Newton
Chief Knowledge Officer, PHE
Cancer – A public health perspective


So many things to learn from what Kris was saying. Behind every statistic and data is a real person like Kris. This should be a reminder.

4 things we need to do:

  • Prevention
  • Diagnosing cancer early
  • Make sure very patient gets the best treatment
  • Care of people who are living with cancer, whatever the outcome

Struck by Cancer Research UK stats that 40% of cancers are preventable. There is a huge challenge but we as a population need to address it.

Good news is that we have the best treatment services and charities in the UK. We have some of the best intelligence systems in the world. The best Cancer Registry.

No doubt that cancer intelligence NCIN has played it’s part in improvements. More that we could do with the data to improve outcomes and prevent cancers.

How do we build NCIN in Public Health England to get even better outcomes?

Mission – “To protect and improve the nations health and to address inequalities working with national and local government, the NHS, industry, academia, the public and the voluntary and community sector”

Broken down into manageable chunks – outcome focused.

  • Helping people to live longer and more healthy lives by reducing preventable deaths and the burden of ill health associated with smoking, obesity etc
  • Reducing the burden of disease and disability in life by focusing on preventing and recovery.
  • Protecting the country from infectious diseases and environmental hazards
  • Supporting families
  • Health in the workplace
  • Promoting development of place based public health systems
  • Developing our own capacity and capability to provide professional scientific and delivery expertise

PHE’s jewels in the crown:

  • National Screening Programme
  • National Cancer Registration Service
  • National Cancer Intelligence Network.

PHE inherited some strong partnerships with many including:
National Cancer Peer Review and National Cancer Research Institute.

PHE have a significant local presence:

  • 4 regions, 15 centres
  • 8 cancer registration teams
  • Central coordination and analytical team
  • 8 knowledge and intelligence teams around the country

Track record of delivery is increasing….

  • National Cancer Registration Service
  • Completed the national migration
  • Data going out trusts
  • Published staging data
  • Cancer analysis system implemented
  • Prostate cancer data network

Our public health perspective:

  • Be clear on cancer campaign evaluations have been carried out for lung, blood in pee, breast cancer in over 70s, ovarian, oesophago-gastric, lung reminder and local skin cancer pilot.
  • Analytical work by the central and knowledge and intelligence teams
    • 16 data briefings, 23 in depth reports, 9 press releases
      17 journal articles, profiles, toolkits, routes to diagnosis, workshops for clinicans…
  • New office for data release is established and now operational
  • Reports analytics from the page impressions on our websites show an increase both nationally and internationally.

Collaborative work:

  • Deprivation report with CRUK
  • Routes from Diagnosis with Macmillan
  • Less common cancers – Cancer 52

The patient portal:

  • NCRS and NCIN
  • Brians Trust
  • Cancer Research UK

Summary/Future Look

  • Cancer remains as a significant public health issue
  • Many national cancer bodies inside PHE brings definite synergies, some of which we are now seeing, but there is much more to do… we want your help with it.
  • Growing demands for our intelligence capacity
  • NCIN will grow and flourish as a partnership and as part of PHE’s integrated cancer programme.

Increasing value to assets whilst data, partnerships and resources continue to flourish and grow.  We need to work together to ensure that this data and these collaborations continue to demonstrate improvement for cancer outcomes.


Sean Duffy
National Clinical Director for Cancer – NHS England
Progress on the delivery of optimal care for cancer patients in the new NHS


Optimal cancer care in the new NHS – an absolute commitment to deliver services for better outcomes.

The survival challenge

  • Mortality improvements v survival gap
    • Although we’ve made gains in the survival in the UK. Other countries have also had improvements.  We need not to equal the other countries improvements but to ensure our improvements are greater.
    • Eurocare 5 (2013 analysis of 2007 data)
  • Stage at presentation and earlier diagnosis.
    • We need a cultural and system shift to lead a stage shift.
    • Primary care interface – % flows
      • GP direct access to tests. Does it make a difference. On average access to test should make a difference for 6% cases. BUT hides 15-20% for cases such as stomach, ovarian, pancreas, renal, brain.
    • Route to diagnoss, England 2006-2008
      • All cancers emergency presentations 24%

Ownership of treatment decision
We should ask every MDT in every hospital to look at least once a year at the decisions it has made (treatments) and what it has meant for its patients (outcomes).  By revisiting these decisions they may be able to see improvements or identify changes that need to be made.

National datasets for cancer should enable the work – chemo, radiotherapy and outcomes data
National audits need to be used more.
Transparency is essential

12 senate geographies for the cancer map. If they took a grip of their own survival curves then we could be in a better position.
Plea – Own your 1 year survival and work collaboratively together.

Selection bias

  • Age and outcomes
    • 34% of 80-84 and 43% of 85+ are diagnosed via emergency route compared to 25% of 70-79 year olds.
  • Age and treatment
    • Access to treatment of the older population is variable. There is an age bias that exists and the data sets demonstrate this. Not just for surgery but also chemo, radio and access to a cancer nurse specialist.
    • Perhaps there could be a co-morbitity and late stage diagnosis but not completely responsible for decline in survival in older patients.
    • Older patients get less chemotherapy delivery for colorectal patients.


  • Key factors that influence greatest impact is access
  • The question of volume and outcomes
  • Community of care, not individual or isolated providers
  • Redefine the model – ideal structure within given senate geographers based on IOG principles and evidence.

What is best and where?


  • Gap in survival to tackle together.
  • Effective plan for early diagnosis to ensure the front end of our health care system delivers what you need it to.
  • Local MDT and senate geography focus on outcomes as a result of treatment decisions is vital to improve survival.
  • There is an inherent age bias that if tackled could yield significant survival benefits.
  • The evidence for volume linked to survival outcome cannot be ignored.


Q (Kathy – London Cancer Alliance) – What has happened with the key recommendation in 1995 re early diagnosis?  Ambition was to go much further than they did at the time. The data at that time wasn’t as robust as at the moment. We have to be driven by the evidence. Any change moving forward has to be with improvements.
A (Michael CR_UK) – Are you talking to your colleagues in Scotland Wales and N Ireland about how to tackle the problems as a UK wide problem?
We are an English organisation but we are doing as much as we can with the UK. Spoke last week with the Welsh Health Minister (who are producing a white paper which is very interesting). Certainly on research we are very keen to work across the UK. Every reason and possibility of working across the UK not just England.
Julia Vern NCIN public health lead – UK and Ireland Association of Cancer Registries – absolutely a priority for all of us.

Q (Bob – Former NHS professional and lay rep) – Where is recent data?
A – Pointing you to the right person for the data question.

Q (Ian – Patient) – Emphasis is always on the clinicians rather than the patients. If there was more of a focus on the patient not the clinicians then I think you would see more survival times. Supporting stop smoking, diet etc particularly those of the poorer socioeconomic groups.
A – I think you’re right. Workstreams should be looking at exercise and other actions as a joint initiative between NHS England and Public Health England.
Approach moves away from a health service that provides testament for someone who is ill, rather than helping patients help themselves before they become a patient… it needs collaboration with charities, education and health care systems.

Q (Ms Clifton – Clic Sergeant) – Early/late diagnosis. GP dismissal of patients. Is any research done on looking at the reasons for late diagnosis or sending for tests in primary care?
A – How long have we got? There is a lot of research and simple things that primary care have developed to be more proactive. Got plenty to base a plan and are working on it. Key for me is that this is about public and primary care behaviour. The new changes should enable us to have more conversations and changes in this area.
Kris – We ran a focus group with some GPs. Reduction of the younger patients and also looked at the flip side of empowering patients about what you expect from a GP visit. Makes a huge difference.

Q – (Sara Hyams CR_UK) – Pick up on the age issue. How do we get more on the agenda for early diagnosis of the younger patients? i.e. under 30. How can we also improve things at the other end of the scale too?

Q – CCG – when would staging data be available to CCG levels?
A – Staging data has already been published. By CCG I understand it’s going to be June. NCIN is publishing it later this month.

Q – Health intelligence officer – I’ve got a 23 year old daughter. All this activity around data and intelligence isn’t worth anything unless it is used for the benefit of the patients.


Plenary 1 – Outcomes for young people with cancer: matching commissioning guidance with the evidence

Martin McCabe
Chair of NCIN Young Patient Oncologist

NICE guidance on improving outcomes for young people and children with cancer.  (“CYP” children & young people)

  • Care co-ordinated as close to home as possible
  • Networks should meet the needs of CYP with cancer
  • MDT should provide cancer acre
  • Each CYP with cancer should have a key worker
  • Care appropriate to CYPs age and type of cancer
  • CYP with cancer should be offered the chance to take part in research trials
  • Treatment should be based on agreed protocols
  • Sufficient specialist staff
  • A register of all cancers in people aged 15-24

National Registry of Childhood Tumours
Established in England, Soctland and Wales in 1962

Childhood cancer isn’t well fit with ICCD coding so they have their own code. Birch coding.

TYA cancer
Teenage and Adult with Cancer TYAC founded in 2004.

In children cancer is always rare. Rare because it’s found in a child or because it is rare anyway.

Looking at survival AND important is quality of survival for children and young people.

Treated at a Principle Treatment Centre… but what happens when they’re referred out of the PTC?

One of the main advancements in childhood cancers is the enrollment of children into clinical trials. New paper from NCRI to be published very shortly which demonstrates this.


Kathy Pritchard-Jones
UCL London Cancer
Paediatric clinical outcomes research – UK policy and the role of the European Network of Cancer Research in Children and Adolescents – early diagnosis

Talking about the European agenda for paediatric cancer clinical outcomes research.
ENCCA European network for cancer research in children and adolescents 2011-15
SIOP European standard of care for children with cancer
ExPO-r-NET European Expert Paed Oncology Research Network for Diagnostics and Treatment

Outcomes research

  • Outcomes seeks to provide evidence bout which intervention work best
  • Study of the end results of health services to take account opatients experience and costs to society
  • Provide scientific evidence

NHS Outcomes of framework

  • What can we really measure that is important to patients?

ENCCA – in 4th year of operation

  • Building a strategy to enable biology driven clinical and pre-clinical research. Tissue sampling, biobanking and sharing tissue across boundaries, training for clinicians, researchers and scientist. Long term sustainability of encca is bringing together national paed and cross cutting research groups to take it forward.

Why has overall mortality for children with neuroblastoma in the UK worsened?  Is it because there’s no trial currently open?

Infants with cancer have the highest rate of early mortality. Can we improve their model of care?

Equal access across Europe. Appointed by DG-SANCO to pilot how cross-border research can be done correctly?

Collaboration, defining entities, regulatory, embedding teaching and research.

Tony Moran
Public Health England
Survival trends for young patients in the UK – the good and the bad diagnosis

Lower survival in UK than several other countries
Rate of improvement slower in TYA than other age groups?

[Once the presentation is available, I’ll upload it here]

Kathryn O’Hara
The Christie NHS Foundation Trust
Referral to and from specialist Centres- how widespread is the practice?


Normal for 0-14 year olds to be under the principle treatment centres classified by extent of shared care. It’s not consistent in all areas.


Plenary 2 – Living with and beyond cancer
Heather Monteverde
GM of Northern Ireland with Macmillan Cancer


Considering living with and beyond cancer is a newly adopted consideration… relatively. So many changes within cancer with chemo, radiotherapy, surgery etc.

Consequences of treatment or late affects have a huge impact on the quality of life of people living with and beyond a cancer diagnosis. This also needs to be addressed. The physical as well as the emotional and psychosocial issues.

Raoul Reulen
Uni of Birmingham
Teenage and Young Adult Cancer Survival study

Approx 225,000 5-yr survivors
Population based cohort
Diagnosed 1971-2006
Age 15-39
Covers England and Wales

Study link


Matthew Francis
Public Health England, Knowledge and Intelligence Team, West Midlands
Method of identifying stage IV cancer

Presentation – please refer for charts and graphs.

Matthew spoke about the differences in staging sarcoma compared to other cancers.  The usual methods of staging include tumour size, nodal involvement and if there are any distant metastases identified.

With reference to sarcoma patients only 2% of those diagnosed with stage IV actually comply with these staging rules.  This makes it increasingly difficult to make comparisons and potentially contribute to a less favourable outcome.

In addition the rarity of sarcoma:
450 bone sarcomas new diagnosis
2,800 soft tissue sarcoma new diagnosis
less than 1% of malignancy
occur in different anatomical locations.

Detailed staging data is not available for patients with sarcoma.

Metastases site recording in HES can be the only identifier but this information isn’t always recorded.

4,602 new cases of bone sarcoma
20% of had metastases at diagnosis
27,913 soft tissue sarcoma between 2000-2010
3,602 13% had metastases

Soft tissue sarcoma – some sites have space for growth i.e. abdominal or breast where the tumours have space to grow and therefore not diagnosed as quickly i.e. may be identified at diagnosis with metastases.

Staging data for sarcoma is incomplete.
Those with metastases have significantly poorer outcomes.
The methodology used to identify stage IV sarcoma patients could be applied to other cancer data sites and assist the National Cancer Registration Service.

Chris Brown
National Cancer Registry Ireland
Using routine prescribing data to identify comorbidities in ovarian cancer patients


Please refer to the slides and data of the presentation.


Plenary 2 – “Show me the data!” – information and intelligence for your ovarian cancer service

Chair: Annwen Jones
Target Ovarian Cancer


Ovarian cancer outcomes could be improved. NCIN has provided hard evidence that outcomes can improve and also provided data and insights to shape policy and practice.
7,000 cases diagnosed each year
3/4 of cases aged 55 years and over
4th most common cause of death from cancer in women
4,300 women die each year
Late diagnosis is a major issue

Before 2007 (i.e. before NCIN) we had very little and incomplete data that was also unreliable.

32% of women diagnosed with ovarian cancer via admission to A&E v 24% of all cancers
15% of women die within two months of diagnosis.

Pathfinder Study – Target Ovarian Cancer – 2009, 2012, 2015… ongoing study.
Looks at patient delay, GP delay and system delay.

[Key findings published to date click here]

International benchmarking partnership (ICBP):
1 yr survival for ovarian cancer in England lags behind comparable countries
5 year survival difference results from 1 year difference. In England we do quite well at this point.

Data shows that there are wide regional differences in survival.

What is the underlying cause of variation and what more can we do to improve survival for all women with ovarian cancer? What does the data intelligence that we currently have tell us? What further data do we need?

Put patients at the heart… policymakers, patient organisations, commissioners and clinicians around patients.  The patient must be central.

Screen Shot 2014-08-18 at 13.14.34

The value of data to patient organisations:
Policy – impossible to influence policy without robust data.
Charity – we have to make sure that we’re spending the donations wisely. Data helps make decisions and priorities as a charity.
Patient choice – patients with a voice.  Personal note – it was wonderful to see the faces of patients on Annwen’s slide particularly that of my gorgeous smiling friend, Tish, who I miss so very much.  Tish was such a wonderful patient advocate for Target and others diagnosed with ovarian cancer.

Dr Andy Nordin
Chair NCIN Gynaecological Cancer site specific clinical reference group
Ovarian caner in the UK: the emerging picture

ICBP – opportunity to compare outcomes with other high quality data countries such as Australia, Cancer, Denmark, Norway, Sweden 1996-2007

Gynae cancer hub with NCIN run through of projects carried out.

Results are improving in younger women but data identified that it hasn’t improved in the older patients. NCIN were then able to look at this area too.

Routes to Diagnosis in November 2010 we all know was that a great many people present as emergency presentation… ovarian is one that indicates this highly.

Short term ovarian case mortality:

  • why the elderly
  • late presentation
  • reluctance for referral
  • performance status
  • patient preference
  • access to specialist surgery
  • access to chemo
  • national variation

There needs to be more specialisation at a surgical level.  To look at the number of consultants by caseload and acknowledge that they should be doing more than 15 cases per year.  This surgery should NOT be undertaken by general surgeons but by specialist surgeons in specialist centres.

More use should be made of the cancer e-atlas

Jason Poole
Associate Director, Public Health England
Short term ovarian cancer mortality in and across England

Early results 2006-2009:
5288 women 31% died in the first year
2,592 died in first 2 months

3 contributory factors:
emergency presentation
advanced age
non-specific tumour morphology

case-mix analyses

  • women 2008-2010 resident in England, ages 15-99
  • data from national cancer data repository
  • HES inpatent and outpaitient
  • Ovarian cancer including fallopian tube and primary peritoneal cancers
  • Excl borderline tumours, sarcoma, germ cell tumours
  • 15,000 women in analysis

Patient outcome – excess mortality ie over and above ‘normal’ population mortality
3 periods of analysis – diagnosis to 1m, 1mto 6m; 6-12m

case mix factors

  • age groups
  • deprivation quintile
  • comorbidity
  • route to diagnosis
  • stage
  • morphology
  • treatment
  • basis of diagnosis

Dr Rob Gornall
Clinical Director Cancer Services
The challenge of improving cancer services by commissioning pathways – the increasing value of data


Rob’s presentation reiterated a great many of the points earlier regarding early diagnosis, variation in primary and secondary care services, complex commissioning pathways, patient behaviour and perception of risk.

Please refer to the presentation for more data on the above but please note there are graphic photographs.

Louise Bayne
CEO Ovacome
Robust data – the value to patients and patient organisations of the NCIN

Why is the NCIN data required and quality of it so important?:

  • demographically representative
  • statistically significant sample size
  • non biased enquiry motive
  • highly skilled practitioners
  • published in full

Without NCIN data, charities need to look inwards for data sources and information. That has intrinsic problems about it.  Attract a sub-set of the cancer community who are not representative. Might be questionable motives as to why a charity has come up with a news story or report.

Why does this matter?

Data is used for:

  • NICE decisions on access of treatments.
  • shaping research proposals
  • commissioning
  • advocacy programs
  • patient information
  • individual treatment choice

Without excellent data patient organisation activities risk being characterised as:

  • opinion drive
  • biased
  • questionable motives

Leading to:

  • wasted resources
  • lobby fatigue
  • harm to misrepresented clinical sectors
  • poorer outcomes for community

Making the data count

  • Quality profiles – annual report using NCIN/DH data to provide a local picture of service/standards
  • Available on the Ovacome website
  • Parliamentary outreach day with Ovacome members lobbying their MPs
  • Circumvents clinical gagging clauses
  • Puts clinicians in the driving seat – we don’t say what’s to happen – clinical empowered to suggest improvements
  • Last year resulted in Secretary of State intervention, improvements to the data collection, the recruitment of clinical staff and improvements in clinical service (in one centre the development of a GP helpline)

The drive to improve diagnosis:

  • the majority of women have advanced stage disease at diagnosis
  • received wisdom – ovarian cancer is a silent killler – only symptomatic at advanced stage

But the studies said differently….

Using data for improving diagnosis:
BEAT campaign Bloating Eating Abdominal Talking.

Survivors teaching students

Commissioning – why NCIN is now essential
Commissioning challenges us to consider business as usual or optimal practice
To drive improvement trustworthy data is essential
However gaps in data remain a challenge


NCIN (National Cancer Intelligence Network) – Cancer Outcomes Conference (Day 2)

Our second day of the conference “Supporting research” was introduced by David Ardron, Lay member, National Cancer Intelligence Network Steering Group.

David is passionate about advocacy and patient involvement at all levels.  It’s always a joy to be around David as he’s very good at inspiring you to do more, to get involved, to have a voice, to listen and to talk.

John Parkinson, Director, Clinical Practice Research Datalink
Clinical Practice Research Datalink – presentation

John reiterated the need for quality data “Extremely important that we monitor the quality of data”.  I loved that John informed us that the worst UK data is still leagues ahead of much of the global data, including the USA.

CPRD is looking at the quality of the data, setting and monitoring standards.  Looking at randomised trials with regard to the data and every day improving it and the standards for it’s retrieval and inclusion.  Currently they have 52m signed up in England and are adding another 12m for Scotland, Wales and Northern Ireland.

The data is accessible, searchable, cross-referenced and linked to many systems.  Thereby allowing the users to really determine patterns, information, requirements, costs etc associated with the data.  It’s aim is so that utilising this data becomes easier so do the results to predict AND address trends or increases in disease but also to be able to report on where something didn’t go as it should or can be improved upon.

Fascinating and I shall be watching the news with regard to CPRD.

Kerina Jones, Senior Research Fellow, Health Information Research Unit (HIRU)
The Secure Anonymised Information Linkage (SAIL) system: challenges and opportunities in health data linkage – presentation

Kerina’s presentation of the SAIL system once again highlighted many of the challenges idenitfied by others.  THey are however tackling many of them head on with this system.  Certainly worth watching for other integrated systems, how to integrate and why integrated data is required if we are to make headway in healthcare.

Kerina also showed us the MS Register which is being used to understand more about ‘living with MS in the UK’ and trying to make sense of MS.  As you know Mum was diagnosed with MS and although she lived a long and active life for many many years with the illness, it ended her life early.  She sought answers to why, what if, how since diagnosis and importantly questions such as how do I lessen the effects, deal with the side affects or get by day to day.  Perhaps this MS Register will lead others to the answers that Mum so desperately sought or perhaps the people currently providing answers will help a new generation to manage life with MS.  If you know someone diagnosed with MS, perhaps they would like to register and become involved?

Cathie Sudlow, Chief Scientist, UK Biobank
Research opportunities in UK Biobankpresentation

Are you part of the Biobank database?  I am.  So I found it really fascinating to hear more about Biobank from the aspect of how the data is being used, rather than the questions that I see and reply to.

It was a huge project to implement with over 500,000 UK adults taking part.  Questionnaire to be completed, physical health tests to take, blood and spit to be given and analysed and then the follow up processes.  As a participant I found the inclusion process very easy to do and well organised.

Cathie showed pictures of where samples are stored and also how they may be utilised for testing.  Her slides in the presentation and the information on the site itself show how the data collated and utilised on this scale really can make improvements in care in the UK.  It also demonstrates that projects, even on this large scale, can also be carried out efficiently and make a difference.  However it really does require our involvement – would you get involved?


We then headed to parallel sessions chosen by each delegate from the following:

Health economics
International focus
Co-morbidity and risk adjustment
Recurrence and late effects

I attended: International focus

The session was introduced by Dr Jane Hanson, Lead Advisor for Cancer, Welsh Government & Head of Cancer National Specialist Advisory Group Core Team.

There is something so fabulously refreshing and encouraging to hear from a group of clinicians and researchers about collaborative working across borders.  All the speakers in this section were able to demonstrate joint working, the reasons for it and also sourcing some results.  Excellent and I truly hope that other, perhaps insular projects, look to join forces with others.

Harry Comber, Director, Irish National Cancer Registry
Towards a European cancer information system; the EUROCOURSE project and beyond – presentation

EUROCOURSE was new to me.  It’s growing and the buy-in from a multiple level of sources and countries is growing.  The strict regimen for which data is accepted is being acknowledge and addressed (after many iterations and refinements).  The future, albeit, a great deal of work could benefit more than just cancer.  By sharing into a joint portal all european cancer registry, we will be able to not only improve healthcare but also to look at Europe being the choice and specialism for some cancers – and accessible.

Home (European Cancer Observatory)

There is a conference in September 2012 (that I’m not attending) IACR Conference 2012 at which it is hoped to define further registration methods, data quality issues, evaluation of clinical care, survivorship and survival and linkages with other data.

Dr Roberta De Angelis, Senior Researcher, National Centre of Epidemiology, Italian National Institute of Health
Cancer survival in Europe: first results from the EUROCARE-5 study

Dr Roberta De Angelis presented information for the first results that haven been drawn from Eurocare-5 study.  The Eurocare-5 study looks at the survival and care of cancer patients in Europe.

The project has been going for some years and has grown with each iteration.  Increases in numbers of patients included, numbers of registries participating and is now from 12 European countries with incidence and survival data available.

Because the data is now stretching back some years and has been validated and improved by some hardlined protocols and rules, they are now able to utilise the data for the purposes of good reporting.  There have been a great many results and documents produced from this data and is accessible on their website, including reports with reference to the relative survival in Europe for breast cancer patients.

Dr Martine Bomb, Programme Manager, Cancer Research UK 
The International Cancer Benchmarking Partnership (ICBP)

The ICBP is a unique and innovative global partnership of clinicians, academics and policymakers.  Dr Martine Bomb was terrifically excited to be able to let us know that there were 4 papers about to be published (currently in final review) relating to their findings.

They have been particularly working with breast, colorectal, lung and ovarian cancer.  The collaboration of their work spanning 12 jurisdictions in 6 countries and 3 continents and trying to establish WHY cancer survival rates vary between countries and jurisdictions.

I think its also important to note that the first phase of this project was funded by NCAT (National Cancer Action Team in the UK) but the next phases are to be funded by each jurisdiction contributing to the cost.  Hopefully this will not mean that things will slip due to funding issues but that the impetus of the work already undertaken and published will keep the project going and growing.

A link to some of the ICBP publications can be found here

Dr David Brewster, Director, Scottish Cancer Registry introduced the first afternoon session
Data visualisation

Alan Slater, Cancer Research UK
Using data visualisation to engage the public and to communicate the messages to cancer research and control – presentation

Alan Slater, as always, gave an engaged presentation relating to data.  I know it’s a little difficult to imagine how data can be engaging but really it is… I think I love it so much because I know how the experts, analysts, clinicians and researchers are improving the quality of the data, the breadth of where the data is retrieved from and then how the data can be interpreted to make a difference.

The first few slides of Alan’s presentation was using design and infographics from Facebook to show how the presentation of data can be deceptive.  He then presented the data in a different way and then a further method – same data but a very different visualisation and view.

His presentation and many different ways of presenting data, highlighted that it is terrifically important to know and understand your audience.  To present data accurately and specifically for the audience but not in a way that it appears to be false or inaccurate but perhaps simplified or indeed in depth.

He also provided a list of good tools that could be used for data visualisation tools.  But importantly he also confirmed what we all know (we being involved patients or patient advocates) is that data is important in a patients decision making processes and the patients should be empowered with information provided accurately and told well.

David Ardron, Lay member, National Cancer Intelligence Network Steering Group
What s a Kaplan-Meier Plot anyway? – presentation

David’s presentation into what a Kaplan-Meier Plot really is was a very personal one.  He used the case of his father to demonstrate the need for patient involvement, the value of choice and quality of life.  It also spoke of learning from examples past and present.

Sarah Stevens, Eastern Cancer Registration and Information Centre
Insight Track; a new tool for visualising and following the patient pathway – presentation

Sarah’s presentation related to ENCORE data.  A great deal of the issues that she spoke of with regard to data input, transfer, value and use had been covered by a great many previous speakers.  However one line she said really did resonate we should use data registries such as ECRIC in order to “Fight cancer with information”


The final and closing plenary session was chaired by Richard Stephens, Chair, National Cancer Research Institute Consumer Liaison Group.

Simon Davies, Chair of Cancer52 – representing 57 cancer charities that focus on rare and less common cancers
Less is more!  The way forward – presentation

Often when we’re talking about cancer data, information and resources, we hear only about the ‘main’ cancer types.  So it was very refreshing to have Simon Davies speak at the closing of the conference about the importance of data with regard to rare or less common cancers.  53% of deaths in the UK are attributable to cancers that are defined as rare or less common.  However the difficulty is that of those 53% there are many different types of rare or less common cancer types!

Simon spoke of Cancer52 which now represents 57 cancer charities and work together to ensure that rare and less common cancers are on the agenda for research, discussion, information and support.

Mike Richards, National Cancer Director for England
National cancer intelligence: where now; where next? – presentation

Mike advised that the NCIN is to be moved into Public Health England.  What this should mean is that is has more governance within the health arena in the UK.  He spoke of where the information was obtained, where it should be accessed and how it should be used.

We also learnt that there is to be a new collection of genetic information added to the NCIN dataset in the near future.  It is hoped that this will lead to better output, better and more accurate commissioning and all this in a time effective period.

Mike’s final point was “Most importantly – cancer intelligence will be THE primary driver of improved outcomes – as a lever in itself and as the bases for other incentives (e.g. financial)”.

My conclusions of the conference.  Data is valuable.  But it’s only as good as the input data in order to accurately be used.  There needs to be buy-in from multiple levels of people, organisation, jurisdiction, continent and countries.

NCIN (National Cancer Intelligence Network) – Cancer Outcomes Conference (Day 1)

Ray Murphy, Chair, National Cancer Partnership Forum, opened the conference and welcomed delegates in attendance.

Ray had a couple of questions that he posed in advance of the conference starting:

“If we are to equal the European rates, we need to save an additional 5,000 lives a year by 2014/2015” – I’ve heard that number before and I can’t help but quiet down the nagging voice in my head that lets me know that the number will be much greater than that – Europe are imrpoving their cancer survivorship numbers too and 5,000 will only equal their numbers today. We need to try much much harder!

“How far are we away from the best cancer (useful data) in the world?”

Chris Carrigan, Head, National Cancer Intelligence Network
The evolution of the Networkpresentation

Jem Rashbass, National Director for Registry Modernisation, National Cancer Intelligence Network
The vision for cancer data in England

Data should allow personalised and stratified medicine. What we’re discovering and confirming is that no one person’s disease is the same as the next. Recently there’s been the discussions about how many types of breast cancer there is, for example. This means the surgery and treatment thereof should be tailored according to the type of breast cancer AND the person diagnosed.

By providing a personalised care plan the patient is further empowered in their own decision making of their own health and life plan.

A great example of a patient portal is the Brain Trust

We should be able to “predict” services availalbe to patients and clinicians based on the statistics and indeed we’re starting to see trends for this purpose emerging.

Dr Mick Peake, Clinical Lead, National Cancer Intelligence Network
Using data to change clinical practicepresentation

Ciaran Devane, Chief Executive Macmillan Cancer Support
Is data really benefiting patients?presentation

Ciaran spoke of data (good data) being critical in commissioning.  Data can identify where all are diagnosed for the purposes of treatment, followup, survivorship and end of life care.

By collecting and managing this data we are able to call upon the commissioning at the right time and in the right location ie local for anyone diagnosed with cancer.

42% of deaths per annum have had a cancer incidence however we have to consider that the numbers of cancer patients WILL go up.  Not because there are more people diagnosed but because people are surviving cancer.  Therefore the need for more survivorship and end of life care is critical.

More is being written about survivorship than mortality however we need to ensure there is a shift in the care for patients (and carers) to be able to manage survivorship.

Breast Cancer Care have been able to utilise data to evidence the need for more resources surrounding secondary breast cancer patients.  Crucial changes to the care for breast cancer patients that comes from data being gathered, analysed and acted upon.  See Breast Cancer Care’s paper ‘Spotlight on secondary breast cancer‘.

Macmillan are trialling a tool which it is proposed will assist people diagnosed with cancer to choose the right treatment and care in a location that near them, or their family.  At the moment the tool is being trialled for colon and rectum cancer in England.


We then headed to parallel sessions chosen by each delegate from the following:

Early diagnosis, screening and prevention
Patient experience and reported outcomes
Cancer Audit

I attended: Patient experience and reported outcomes

The session was introduced by Dr David Cromwell, Senior Lecturer, London School of Hygiene and Tropical Medicine.

Robert Whistance, University of Bristol
Patient-reported outcomes (PROs) of colorectal cancer surgery: a systematic review of outcome measures – presentation

He spoke of the difficulties of patient reported outcomes and data in some areas, particularly with regard to obtaining the information when a patient has left hospital or for the followup appointments or indeed a patient’s perception of pain, for example.

The problems surrounding standardisation of trials, questions and information gathered.  However he was also able to evidence that although the earlier periods of classification and clarification can be trying, the results were critical to getting the care right.

He also pointed us to The Cochrane Collaboration, whose tag line is ”
Working together to provide the best evidence for health care”.  I would urge you to take some time to review the site and content.

Dr Anas El Turabi, Cambridge Centre for Health Services Research
Variations in satisfaction with involvement in decisions about cancer treatment: analysis of the National Cancer Patient Experience Survey 2010

Dr Anas spoke of the research that they had been conducting in to the variation of the patient experience resulting from the 2010 survey.  We know that there are several influences such as socioeconomic, ethnicity, age, sex etc however their task was to evaluate it further with a view to being able to draw out what is actually required to change in each area.

There will always be variables and therefore the task is to allow for the variables but to ensure that issues are not overlooked or perhaps addressed to heavily because of the variables but indeed that these variables are managed.

It was evident, more than any other aspect of the survey, that a “Shared decision is an important aspect of cancer care”.  Certainly I know from my own experience and conversations with others, that being part of a decision about ones own healthcare is empowering and healing.

Natalie Blencowe, University of Bristol
Which outcomes are important to patients and surgeons? Core disclosure prior to oesophageal cancer surgery – presentation

The team chose to look at the oesophageal cancer surgery which has the largest morbidity of all NHS surgeries.

What information and how much is good and right for cancer patients?

First there must be a ‘Core Disclosure Set’ established and added by patient belief, expectation or needs.  This Core Disclosure Set once developed would then be used in surgical consultations prior to oesophagectomy.

The methodology and iterations are best detailed in the presentation prepared by Natalie, however I think it’s very evident that the process is long and drawn out but as it should be in order to gain the best possible questions and answers, to be asked and answered in the best possible language and wording.  Each list of questions in any ‘surveys’ or questionnaires must be tested and revised many times by both the clinicians, patients and lay representatives.  Terminology is new to those entering a procedure but old to those who have practiced it for years!

Natalie also referred to the The COMET (Core Outcome Measures in Effectiveness Trials) Initiative (Web and twitter @COMETinitiative) which aims to set standards and agreed measures for this type of work.  If agreed standards and measures are implemented then the iterations of future work may be reduced.


Dr Mark Davies, Medical Director, NHS Information Centre introduced the first afternoon session

Using clinical information to improve services and outcomes

Professor Julietta Patnick CBE, Director, NHS Cancer Screening Programmes

Information to improve cancer screening services

Julietta’s presentation related to the screening programmes that were underway in the UK.  The importance of these programmes, the cost and the benefits.  She spoke of the difficulties in getting people to take up new programmes, particularly those such as bowel cancer screening… however she was also able to demonstrate that screening programmes do work and do pick up signs of cancer early.  They may ‘stand-alone’ as being an expensive option however evidence indicates that by picking up the early signs of illness, most cases are treatable and therefore more extensive surgery or treatment and long term care avoided.

Julietta also spoke of the ‘celebrity affect’ that sees peaks in screening being undertaken. An obvious one was regarding Jade Goody and the sudden increase in cervical cancer smear tests.  At these times the service is hard to manage due to the numbers of tests being required at short notice however many cases were identified at a time when they would have otherwise potentially have been missed with the patient not attending the regular screening.

We therefore concluded that more emphasis was required to urge people eligible for screening, whether it be cervical, bowel, breast or prostate to attend clinic and keep the appointments made for them.

Di Riley, Associate Director, Clinical Outcomes Programme, National Cancer Intelligence Network

Information to improve clinical servicespresentation

This presentation was relating, more particularly, to the commissioning aspect of cancer care in the UK currently and also with reference to the changes that are taking place in the NHS structure.  Di, once again, demonstrated the need for data, it’s analysis and, of course, the imperative requirement for the data to be entered and managed in a good standardised format.

She also explained further the decisions that are made at a clinical level but also with regard to the cost and distribution of services, hospital beds and medication etc.  I guess we are often quick to say that drug A isn’t available or there wasn’t a hospital bed when it was needed or indeed we’re told the cost of something means that it’s too much for our care… but all these factors ARE considerations and hard decisions do need to be made by someone and the buck stops with them.  I can’t imagine the task in hand or the times when they must consider that perhaps they’ve got it wrong or allocated funding to a necessary place when they also know it’s needed elsewhere.  But that’s reality.   It think this presentation really showed other considerations that aren’t usually discussed in the public domain but perhaps should be.

Di also showed us through some of the pages of the Cancer Commissioning Toolkit which is online and available to health professionals, allied healthcare and of course commissioners.  It was fascinating to see the depth to which the system goes and how it can be utilised to assist with ‘best’ decision making at a local level.  The presentation shows many pages and search profiles to give you an idea of the system if you’re unable to create an account.

Like most of the discussions today, this highlighted once again the importance of good, clean data, accurate inputting and standardised information.  Sharing information and accessing information and data for joint decision making.


The afternoon’s parallel sessions where again each delegate from the following:

Access to medicines
Less Common Cancers
Information for the public
Supporting commissioning

No surprise here, I attended: Less Common Cancers

The session was introduced by Baroness Morgan of Drefelin, Honorary President, Cancer52 and Chief Executive, Breast Cancer Campaign

The focus of the introduction was really expanding what we already know that although each individual ‘rare’ cancer may well be small in numbers, unfortunately together they make up over 52% of the deaths from cancer in the UK each year.  It is terrifically difficult to research or support each of of the individual rare cancers but together we can ensure there is a voice, advocacy and pathway to secure more funding and projects.

We also know that some of the ‘rare’ cancers may switch places on the ‘league table’ of cancers with others that are currently reducing in numbers.  Always a positive mark for those that are being reduced in numbers but not necessarily for those that are increasing and not funded for research!

Matthew Francis, West Midlands Cancer Intelligence Unit
Patients with Soft Tissue Sarcomas of the Limbs: who treats them? – presentation

Matthew spoke about the reasons why specialist centres are required in the UK, why a specialism will assist patients in the future and indeed improve the care and quality of surgery.  It’s obvious really, if a team perform an operation repetitively they should only improve.  They should find  a new better way of doing things.  There should be less room for error.  However there is also the difficulties of specialist centres not being as accessible as a local or district hospital to consider.

Some brief statistics to demonstrate the rarity of soft tissue sarcomas as well as the variety in age and anatomical site were shown.  Around 2,800 diagnosis in England and approximately 1% of all malignancies diagnosed.  However over 100 different types of soft tissue sarcoma.

Matthew spoke of the absolutely critical importance of the Improving Outcomes Guidance (IOG) which includes a recommendation that ‘patients should undergo definitive resection of their sarcoma by a surgeon who is a member of a sarcoma MDT which treats 100 or more cases per annum’.

Perhaps selfishly, I considered my own Phyllodes case and those of my fellow English people diagnosed – rarely can any of us say that we have been referred to a specialist surgeon who is a member of a sarcoma MDT and who has treated 100 or more cases per annum!  If ever.

On the fifth page of Matthew’s presentation he identifies that there are only 5 centres in England that treat both bone and soft tissue sarcomas.  15 centres that treat soft tissue sarcomas and another 20 diagnostic centres around the country.  The purpose of these are to provide specialist help on sarcomas for GP’s generic information on sarcoma.

The second part of Matthew’s presentation “Where are patients with soft tissue sarcomas treated surgically?” he provided some statistics from the information/data available.

Matthew was able to demonstrate that there is a lack of accurate recorded data in a number of areas and stressed the importance of this information being included.

He showed us the validation and methodology in his referencing and analysis and then was able to show where treatments were in fact carried out.  Only 51% was carried out in specialist centres.  More shockingly were the figures that identified that there was no HES (Hospital Episode Statistic) record for patients diagnosed or indeed surgery recorded as relating!

There will be some instances where surgery isn’t an option (because of other health issues, at the request of the patient or because the outcome wouldn’t warrant the surgery) however the figures don’t seem to stack up.

There is still a great deal more analyses required to be done, together with encouragement by bodies such as NCIN, NCAT and NHS to ensure that data is input correctly, time efficiently and accessibly.  More information regarding staging of sarcomas should be included as should the discussions held at MDTs and more specifically sarcoma MDTs.

Admissions to specialist centres for surgical treatments are increasing but need to increase further. There’s still substantial amount of work to do for sarcoma and rare cancer reporting however having attended this conference last year and spoken with Matthew at each conference, I am confident that headway is being made, and we should thank them for this.  This evidence will aid the case for investment into rare cancers.

Tania Tillett, Royal United Hospital
Evaluation of a Cancer of Unknown Primary Service; the first two years – presentation

Cancer of Unknown Primary (CUP) is something that is rarely spoken about.. even more than rare cancers!  It was hard enough to be diagnosed with a rare cancer but to be told that you have a cancer but the medics don’t know where it started from or where the primary site is, must be even more frightening.  The question must arise so often – why don’t they know?

Tania is part of a service that has been going for the past two years and is utilising data to try to establish some evidence why CUP cases exist and indeed can be do something better with the data and records to assist with the identification of a cancer primary site.

Tania spoke of some of the difficulties in the project, not least that often by the time a CUP is reported it is because it is metastatic at the time of diagnosis and unfortunately higher in mortality levels.

Despite the lack of clarification or reporting, Tania was able to report that there have been improvements in the care  of CUP cases, that there are cases where specialists have been involved at a much earlier stage in the care and that there is far more optimism for CUP than previously.  There was however more than needs to be done with services, research and classification.

I came away from this presentation a little buoyed by her work and hopeful that Tania and her team will be able to assist more people diagnosed with CUP.

Lucy Elliss-Brookes, ASWCS Cancer Network
Routes to diagnosis for less common cancers

Lucy spoke about some collaborative work to set up standards and specific routes for diagnostic tools.  She identified again the need for better more conclusive data.  She also spoke of shared data and working WITH other health professionals and bands to ensure that a cohesive reporting structure can be found together with standards for asking, receiving and inputting data.

NCIN Cancer Outcomes Conference 2012

I am privileged enough to be invited back to this year’s NCIN Cancer Outcome Conference in Birmingham over the next few days.  I attend in the capacity of patient advocate involved in the many groups, boards and committees as well as moderator for our Phyllodes Support Group.  As always, my aim is to learn as much as I can about different aspects and to report back to the many others who are interested in learning more.

NCIN by way of reference is the National Cancer Intelligence Network and “is a UK-wide initiative, working to drive improvements in standards of cancer care and clinical outcomes by improving and using the information collected about cancer patients for analysis, publication and research.”

In short, they are joining together different data collation systems, ie hospital records, GP records, chemotherapy records etc.  Doing some work with the data input sites (ie hospitals and clinicians etc) to ensure the data is good, clean and accurate.  Then analysing the data many many ways.

This analysis will lead us to identify trends in cancer, perhaps geographically, perhaps by age or even occupation!  We will also be able to determine if there is a bottleneck in good outcomes, perhaps at the GP level or perhaps lack of information and awareness about symptoms.  We can see see where surges in screening have taken place and then work out why – such as the Jade Goody effect for cervical cancer screening.  The data will also be able to identify if there is a better patient outcome if treatments such as chemo/radiotherapy are given for different cancers and at different times.  The data could perhaps also tell us if the quality of life and survival is acceptable IF prolonged with additional treatments.

I know the next few days will be inspiring, rewarding and enlightening but I also know that I have two days of data and information coming straight at me.  Don’t bother asking me my name by Friday night!

NCIN conference – Liberating Information, Improving Outcomes

Notes from my attending the NCIN conference – Liberating Information, Improving Outcomes – 15,16 & 17 June 2011

[Update – 23/08/11 – for all the slides and presentations from the conference.]

NCIN (National Cancer Intelligence Network) – great source of data information relating to cancer. However worth noting that although they’re leading the way in collating cancer statistics (worldwide) we still have some way to go in order to feel we have complete information. For example, they can collect details about radiotherapy but not chemotherapy (a project to pull this info from relevant sources is underway).

Number of tools at (not all available to the public as need reporting tools however plenty to pull together!)

Very interesting Data Briefings reports including one about screen-detected breast cancer (Apr 2011) and one that means more to me regarding soft tissue sarcomas… but there’s plenty there.

There’s also a very useful booklet that NCIN have prepared (and you can ask to be sent to you via called ‘What cancer statistics are available, and where can I find them?’ or I’ve found the download at

I saw a number of presentations by members of the South West Public Health Observatory and also chatted to them at their stand. Some very valuable and useful information in their ‘hubs’, worth promoting and also spending time rummaging for info, resources, profiles, data etc etc The Skin Cancer Hub, there are links to all sorts of other info and hubs, and early diagnosis info, stats etc at Their End of Life Care info is also really in depth.


Plenary session: Improving outcomes for cancer
Chair: David Ardron, Chair, NCRI Consumer Liasion Group

Paul Burstow MP – Minister of State for Care Services
(personally I have a lot of time for Paul – he’s a straight-talker, knows his stuff and quite obviously cares about improving things too!)
UK are still behind the rest of Europe for cancer services and outcomes… however this has narrowed for breast cancer and it was felt that this was due, in part, to more awareness and campaigning by the BC community – so well done all!

Equity & Excellence Paper quite clearly showed in 2010 the need for an information revolution within the NHS and it was good to know we are some way there!
The paper also looked at:

  • Linking information between health organisations, primary and secondary care, hospital episodes etc etc
  • Recognising information to deliver improved quality of care
  • Guaranteeing access to your own information
  • Supporting patient, carer AND choice

We know that presenting cases via A&E ie worst diagnostics at primary care lead statistically to a poorer survival rate. Therefore one of the main areas we can change this is in education of the general public to be ‘body aware’ AND to present early to GPs but also to ensure that the primary care ie GPs are also aware of symptoms, tests, diagnostic tools etc.

There is also a piece about ’empowering’ patients to push forward if they know something isn’t right to ensure that if the GP sends them away with a ‘don’t worry’ that they go back or seek a 2nd opinion!

Data collection is now captured for metastatic disease in England. This is an area that previously we didn’t know about and one that will aid enormously with understanding the long term ‘survival’ requirements for our growing population and also how to manage the metastisised disease. (Again something that England lead on!)

Paul also spoke about evidence of equalities within cancer and producing data for cancer equalities that look at age, demographic, socio-economic, ethnic etc groups and the ability to slice and dice the data so that specific areas of inequality can be addressed head on.


Mike Birtwistle – MD MHP Health Twitter @mbirty
He presented the ‘Brian Cottier Invitatio Lecture‘ I won’t summarise as the slides are in themselves v useful but if you need any more insight, give me a yell.

He also spoke about accounting for quality to the local community –
And also mentioned Joanne Rule and her patient review on patient experience. I found this and thought you may find this ‘interview‘ useful.


Harpal Kumar, CEO, Cancer Research UK
Harpal spoke about where we need to be with regard to saving lives. He said that the Reform bill refers to improving our statistics to save a further 5,000 lives from cancer. However as he points out, if we were to do that, we would still only be at an ‘average’ within Europe which wasn’t good enough.. so in fact we need to save 10,000 lives to match the best. He also said that of course those countries will also be trying to save more lives so we should aim much much higher than that also!

He spoke about spearheading stratified medicine in the NHS and I’ve found a link on the Cancer Research UK site which explains a little more about what is meant by this. The diagram is key to understanding how the data and information for each and every patient can go toward ensuring we’re improving and the flow of the study and patient details.

Currently it will cover 9,000 people within the 6 main tumour types however it is intended that by 2015 all cancer patients and all tumour types will be included.


Dr David Forman, Head of Cancer Information Section, IARC

Global cancer statistics –
David spoke about his role and what he and IARC do with regard to cancer information and global comparisons.
In the UK:
310,000 new cases each year – 156,000 cancer related deaths each year
12.7m new cases each year – 7.6m cancer related deaths each year

Prediction for 2030 (based on growth and ageing of population)
In the UK:
400,000 new cases each year (29% increase) – 210,000 cancer related deaths each year (26% increase)
21.4m new cases each year (69% increase) – 13.1m cancer related deaths each year (72% increase)

Within the developing world the increase is 81% whereas in the developed world it is 34%

2011 UN summit on non-communicable diseases – he spoke about cancer being focussed on at this summit. WHO Global status report

He also spoke about their data collection tool CanReg5 being used in multiple languages to obtain the information needed.


Workshop 1 – Less Common Cancers

This workshop was hosted by Simon Davies of Cancer52. Cancer52 is so named because of UK cancer statistics… 52% of UK cancer deaths are from the less common cancers – bet you didn’t know that? Do also take a minute to look at Cancer52’s website and promote and support them whenever you can… they do a fantastic job with very very little funding. Simon also heads up the Teenage Cancer Trust.

As those of you know I was diagnosed with a rare cancer, Cystosarcoma Phyllodes, in 2009 of which there is very little information, clinical or medical data or indeed a path upon which to travel or guidance on surgery or treatment. Rare cancer is therefore of particular personal interest…

So to the workshop…
Simon spoke about the incidence of rare cancers decreasing however the mortality due to rare cancers is increasing. Surely this should be investigated? Why would mortality increase and incidence decrease unless we’re simply not investing enough in research and trials?

This statistic is also somewhat surprising as Cancer of an Unknown Primary (“CUP”) was also not being recorded until 2008. This is a huge improvement in the collation of data to know that CUP is now being recorded (and ranks 2nd on the list of less common cancers) as this will once again be able to highlight the importance of investigation and research into CUP cases to perhaps better identify how/what/when/where the cancer can be classified.

I was also a little surprised to hear that only 20% of research funding and clinical trials is invested in less common cancers. This seems particularly low given that the incidence and mortality rates aren’t reflected in this investment. However perhaps this is due to each and every one of the rare/less common cancer organisations and individuals working for much smaller numbers and perhaps being a smaller voice in the shout for funds/trials! This is really where an organisation such as Cancer52 can help. Joining all the smaller charities and organisations together in order to have a voice has got to be the way forward and one that I thoroughly endorse.


Chris Carrigan of NCIN

Chris spoke about their Cancer e-Atlas This tool allows you to select different areas in England, the cancer type, incidence, mortality, survival and then to compare with other areas in England. This tool and the data therein are being used to assess local prevalence of cancers and could again be used for commissioning in the locality. In addition the data for mortality will also be used and compared as this may give indicators about specific areas needing further help/assistance/specialist cancer hospitals or perhaps better emergency service responses!

This tool should be used in conjuction with the Cancer Commissioning Toolkit which is accessible by many listed medical groups including GPs and other health professionals.

Chris also spoke about a GP Practice profile. This tool is aimed at both GP practices themselves but also the PCT/Cancer Network GP Practice Profile/Audit Leads to be able to drill down to a practice level and see what that practice is doing with regards to cancer patients. They will also be able to compare themselves to other practices within their area and it is hoped will be able to identify areas of weakness that perhaps can be addressed by training or other initiatives. An example GP report

Once again the subject of good data arose… we need to get all health professionals entering data about patients into their systems accurately and completely. As well all know from our own lives, sometimes its easier to keep things in your head or scribble a note down however if the information is recorded accurately this will then allow organisations like NCIN, Thames Registry and others to collect, collate and analyse that data and to utilise the results in making a better health service for all.

However really exciting is that they’re collectively working toward getting all the information together into one Cancer Registry (ENCORE) with a target date of complete data by 2012/2013. Not a small task but one that is acknowledged by all as being crucial to tackling cancer head on.


Ovarian Cancer Surgery by Specialists in Specialists Centres
John Butler, Dept of Health and Carolynn Gildea, Trent Cancer Registry

Ovarian Cancer is another that is grouped as a less common cancer however the incidence -v- mortality rate are shockingly bad. Last year 6,000 new cases were diagnosed with 4,000 deaths! Often these deaths are due to late diagnosis and emergency admissions rather than via GP practices. I know from friends diagnosed with this rare cancer that they had to return to their GPs on a number of occasions and ended up being diagnosed after presenting to Accident & Emergency. If you don’t know what the symptoms are, please take a minute to look at Target Ovarian or Ovacome.

John and Carolynn’s presentation was on the use of specialist surgeons for Ovarian cancer and more particularly whether the recommendation of “Surgery for ovarian cancer should be carried out by specialised gynaecological oncologists at cancer centres” in ‘Improving Outcomes in Gynaecological Cancers (DH, 1999) does lead to better outcomes for ovarian cancer patients.

Using data collected from 2000-2007 they presented a great deal of statistical information to support this finding however with one caveat… how is a ‘specialist gynaecological oncologist’ defined! It appears that some oncology surgeons are ‘adopting’ this title as they have performed this surgery regularly and have in turn being specialist in their medical facility. What their evidence showed however was that the there was an optimum amount of cases that a specialist surgeon does in order for the outcomes to improve and therefore a ‘specialist gynae oncologist’ who only performs this surgery a few times in his medical facility may not in fact be the best person to be seen whereas a specialist with many cases in a specialist hospital would be preferable as they not only do the work regularly but also have additional knowledge and back up in their medical facilities. John and Carolynn did however acknowledge that further investigation and perhaps classification should be undertaken so that anyone seeking information or guidance with regard to where to have surgery will have all the facts to hand.

But to summarise – they felt that a patient receiving surgery from a specialist gynaecological oncologist & in a specialist medical facility had a better outcome (and this was reflected in the statistics).


Defining Soft Tissue Sarcomas
Matthew Francis, West Midlands Cancer Intelligence Unit

I was really buoyed to hear that West Midland’s Cancer Intelligence Unit is the lead registry for sarcoma in the UK.

Matthew’s presentation was particularly about the epidemiology of soft tissue sarcomas. Looking at how they are classified and also the process involved in their classification and use. He spoke about the importance of educating those parties responsible for data entry to ensure that when a sarcoma is identified they are classified correctly, leading to better reporting, analysis and it’s hoped outcomes. Matthew spoke of the importance of morphology codes to be used in addition as there are so many soft tissue sarcomas that could fall within one ICD-10 category. He also mentioned that most sarcomas are entered as C49 codes.

Particular interest to me as the classification codes that I was told Cystosarcoma Phyllodes had were M9020/0 D24 – Benign; M9020/1 D48-6 – NOS; M9020/3 C50- Malignant. So there’ll be no mention of either ICD-10 nor C49 in those codings! I will be following this up with Matthew and obtaining a list of soft tissue sarcoma classifications in the UK.

One thing that I learnt from Matthew’s presentation was simply that there were so very many different types of sarcoma but also that the importance of accurate data input and classification was crucial if we are going to see improvements in this growing area of rare cancers.


Specialisation of Treatment of Bone Sarcomas in England (2000-2008)
Sally Vernon – West Midlands Cancer Intelligence Unit
Sally was asked to speak about the guidelines in the Improving Outcomes Guidance that recommend sarcoma care be managed in specialised units.

In short, what Sally found from her research and investigations is that there isn’t enough, up to date or accurate data in order to analyse if a patient diagnosed with a bone sarcoma has a better outcome by being treated in a specialist centre. From the figures she was able to ascertain she believes that approximately 40% have no record of being treated in a specialist centre however believes that the figures are inaccurately recorded and therefore analysed. Sally said that a great deal of patients aren’t diagnosed correctly or indeed treated as they often will be from a more elderly population or perhaps have a ‘fall’ and a break is recorded rather than a bone sarcoma identified at an early stage.

The learning therefore from Sally’s presentation was that, once again, we need better, more timely and complete recording in order to assess the value of specialist centres for bone sarcomas.

Predictors of Use of Orthotopic Bladder Reconstruction after Radical Cystectomy for Bladder Cancer: Data from a pilot study of 2414 cases 2004-2010
Luke Hounsome, South West Public Health Observatory
I won’t go into the presentation in length… but suffice it to say that we need better, more accurate, timely and correct data in order to analyse this well!

One final point that was mentioned during this session:
NCIN for patients and the public – are currently recruiting for new consumer members for their Site Specific Clinical Reference Groups – could you help?



Plenary Session: Innovation
Chair – Dr David Brewster, Director, Scottish Cancer Registry

A new single registration system for England
Dr Jem Rashbass, National Director for Registry Modernisation
Jem spoke about work which is underway to pull together all cancer statistics into one system in a quick, accurate and efficient way. He also spoke of the importance of this information and that information is key to moving forward and finding answers.

“We need near real-time, cost effective and comprehensive data”

  • consistent data (including staging)
  • central data-sets
  • Real-time QA
  • Expandable
  • Improved data access and timely feedback
  • Seamless links to cancer screening

He spoke further about ENCORE the central registration system and that this will provide timely feedback to clinical teams along the patients entire pathway. AND that this data in and information out must be two-way.

Information collection data retrieval

He also spoke about the many ways that this information will be retrievable and the importance of being able to pull out reports in many different ways and at different reporting levels… I was very pleased to hear that these are all being considered and consulted upon in the build/implementation phase.


Ciarán Devane, Chief Executive, Macmillan Cancer Support
Ciarán spoke about the patient experience. Something that I believe in so much is patient choice and patient experience, so my ears were pinned back!
[Although I did have to have my own little giggle when the Andrew Lansley quote was wheeled out ‘No decision about me, without me’… which was said at a time when the new health reform was announced… without proper patient consultation!!]
I’m going to bullet point some of the highlights from Ciarán’s talk:

  • National Cancer Patient Experience Survey 2010 identified that the patient experience for those diagnosed with rare cancers were the worst.
  • Evidence that if a patient has a Cancer Nurse Specialist assigned to them, their overall patient experience was better.
  • There are 2m people living with and beyond cancer in 2010. On an assumption that this compounds at 3% per annum, this will mean that by 2030 we will have over 4m people living with and beyond cancer in the UK. Therefore the urgency of getting effective data and in a scalable way accurate and timely way, will assist patients and health professionals to manage to growing cancer population.
  • We need to work with the workforce in the system to ensure good training; intervention and support.
  • Personalisation for each person diagnosed and those affected by someone’s diagnosis. We also need to be better at self-management and provide the tools and services to do so. A great deal can be achieved by empowering patients and their carers.
  • Choice. Every cancer patient has a choice in the UK about where they are to be treated however often the information isn’t available or the patient doesn’t feel comfortable asking for statistics, reports and information. Ciarán would like to see this information available and accessible so that patients are able to make the right choice for them at that time… in an informed and empowered way.
  • Data collection – this should be a collaborative function between the Registry, clinicians, health professionals, patients and carers.


John Baron MP, Chair of the All Party Parliamentary Group on Cancer
John wanted to speak about the three main aspects of the Reform Strategy:
1. Outcomes with the focus on improved outcomes.
2. Patient Empowerment
3. GP commissioning

1. Outcomes
He spoke about the first year survival rates being an area to focus upon. For instance statistically if we can improve the first year survival rates then the overall survival improvement will follow. We know that there is a direct correlation between late diagnosis and lower first year survival rates. We also know that 25% of diagnoses are made via A&E. We know that this is in part due to people being unaware of symptoms or perhaps putting off a visit to the GP however we also know that, particularly in the young, GPs are quick to assume that a person is too young to have cancer and turn them away, only to repeat a visit or the need for A&E.

John, once again highlighted the importance of early detection, symptom awareness, knowing your own body and of course, GP and health professional training.

2. Patient Empowerment
The Reform Strategy speaks about the a patient having choices. John went on to speak about the importance of those choices being jointly made with health professionals based on information and choice available. But also he acknowledged that many patients feel worried about asking for referral to specialist hospitals or second opinions and we (ALL) must ensure that patients are comfortable with asking. It is never a criticism of your current hospital but in fact a way that you can choose the best treatment/surgery/hospital for your requirements. This decision may not come down to medical factors but simply geography ie being nearer your family or friends for support and follow up appointments.
Patient Information Prescriptions should (and will) also be available for all cancers. At each part of a cancer pathway, from diagnosis to death (and may that be a very very very long time between!) that a patient, carer and health professionals are able to obtain information on a particular part of a pathway pertinent to that moment’s requirements. The National Cancer Action Team are working on this and have made great inroads into the project. There has been a slight glitch with the ongoing addition of documents and Stephen Parsons from NCAT explains a little more in a letter. However they are committed to making this happen… As a patient reviewer of the information documents, I am also a firm believer in the system. You can, from CancerInfo site see the pathways that are already live and download relevant information. Click on Pathways and then choose a pathway. You will then see a number of sections and by clicking on the blue + this will open up to show the documents available at that point in the pathway. For example Melanoma has 8 different sections each with varying number of documents available. You can view online or simply tick a checkbox of the information you wish to download and then save/print those documents you wish to view at the time. There are also triggers within the system that mean a document reaching 6 months of age is removed from the system until validated by the originator. NCAT are also working with charities and organisations to ensure we have combined information available to patients. Often we find that each charity has their own leaflet on a particular pathway and the information can be confusing to the patient.

Part of the project rollout is to ensure that at each point this information may be needed there is a printer and trained staff to talk through what the information means and provide a ‘pack’ to person in need of help and guidance. This is also carried out in holistic way so not only addressing the medical aspects but the emotional, psychological aspects of the patient.

3. GP Commissioning
Many people within the cancer field are concerned that the new GP commissioning structure will mean that specialist cancer services are not considered in many areas. However John was quick to say that these were being considered, tackled and planned out so that no matter where you are in the UK, you will have access to GP services through the new structure.

He also spoke about it being a collaborative method that was needed to ensure that the best services were available to all needing them.

John confirmed that Cancer Networks now had guaranteed funding for another year – something that was a concern that these networks, which being patient voice forward, might lose their funding.

Two questions that were asked by patient attendees were:
“Why aren’t patients represented on commissioning groups?”
“If a large part of missed early diagnosis falls with GPS, why are we going down GP commissioning for cancer services?”

Apparently these are both being addressed and patients being included however I would urge each of you to keep plugging away locally to ensure the patient voice is heard and included in commissioning at every level.


Morning Workshop

Survivorship – a patient-led session (in partnership with NCRI Consumer Liaison Group)
Chaired by Ray Murphy, National Cancer Partnership

Ray ran through some the stats we’re getting to know so well. 2m people living with and beyond cancer now. 4m people living with and beyond cancer in 2030.

Cancer affects:
– physical, social, psychological… and so much more.
– patient, family, carers, colleagues… and so much more.


Cancer Survivorship in the UK
Jacob Maddams – Thames Cancer Registry, Kings College London

Jacob examined data from 1990-2006 together with HES (Hospital Episode Statistics) from admitted patients in 2006 and this data was linked at a patient level.

I don’t think there was much more that Jacob added to the statistical evidence that has been provided previously and as above however it was so clear, once again, that we collectively, need to get smarter, faster and more accurate with our data inputting so that we can really analyse and use the data!

Increased risk of skeletal and cardiac events in prostate cancer patients
Luke Hounsome, South West Public Health Observatory

Luke’s presentation was looking at the data around prostate cancer patients and particularly the use of hormone therapies used with advanced or progressive types of prostate cancer. Although, sadly, once again it was evident that the data was incomplete as a number of the ‘watched patients’ were lost after a certain point leading a conclusion that Luke couldn’t specifically link a death to the treatment as it may have been inaccurately recorded for this evidence purpose. However that said, there was enough evidence to report that prostate cancer patients are at a greater risk of admission to hospital for cardiac events or bone fractures. Those undergoing ADT have a further increased risk. Women undergoing hormone therapy for breast cancer are often prescribed bisphosphonates to protect against fractures and this practice needs to be extended to men being treated with ADT. Awareness of the high risk of cardiac events should be raised to prompt discussion of lifestyle changes to reduce risk.

Using clinical attendance patterns to determine likely survivorship journey (colorectal cancer, multiple myeloma, hodgkin’s disease) in England
James Wells Monitor Group, Europe
James was challenged with studying the route from diagnosis and defining the same from both the healthcare and patient perspective.

Electronic Patient reported Outcomes from Cancer Survivors (ePOCS): preliminary results from feasibility testing of a scalable electronic system for collecting pros and linking with cancer registry data
Laura Ashley, University of Leeds
The ePOCS study aims to test the feasibility of an electronic system for regularly collecting patient reported outcomes (PROs) and linking these with Cancer Registry data.
The premise of ePOCS is that this will increase and improve the patient experience. More information can be found via the ePOCS website


Findings from a National Audit of Cancer Diagnosis in Primary Care in England
Greg Rubin, Medicine and Health, Durham University and Sean McPhail, NCIN
A national audit of cancer diagnosis in primary care was undertaken in 2009/2010 as part of the NAEDI (National Awareness and Early Diagnosis Initiative) and address perceived deficiencies primary health care performance in cancer diagnosis. 17 of the 28 cancer networks in England took part. 3 networks used a sampling approach to practice selection. In the remaining 14 networks all practices wishing to participate were able to do so.

Data was collected on 18,113 patients by over 1,000 practices in 17 cancer networks.
Data quality was high in most categorical fields including stage and considered 90% complete.
Comparison was made with the cancer registry data and showed that the dataset was representative.
1,066 (5.9%) of patients were described as housebound
934 (5.2%) had a communication difficulty.
Both disabilities were associated with significantly increased odds of later stage at diagnosis while age, sex and ethnicity were not.
The median duration of the primary care and referral intervals was 4 days and 12 days respectively, with considerable variation by cancer site. Emergency presentation, usually associated with worse outcomes, occurred in 12.8% of all cases but ranged from 3.8% (breast) and 40.0% (brain). In 6.1% of cases the GP believed that better access to investigations would have reduced delay in diagnosis. This also varied considerably by site, rising to 19.5% for brain and 12-14% for ovary, pancreas and kidney.
In conclusion this report showed that the analysis method was effective however as we know we need more awareness at a GP level to reduce late diagnosis. Increasing the use of this data capture and evidencing this back to GPs will aid in improvement at this level.
One other piece of information that came from the report was that there was a big disparity between primary and secondary cancer referrals. Secondary being


Variations in usage of the two week wait referral system in general practice
Carolynn Gildea, Trent Cancer Registry and David Meechan, Trent Cancer Registry
Carolynn and David had been asked to investigate the patterns in the use of the two week wait referral system by GPS. Knowing that early diagnosis is an important part of the cancer outcomes strategy and within this, the two week wait referral system plays a key role.

They looked at three measures to do the study: referral rate (no of 2 week wait referrals as a standardised rate); conversion rate (proportion of 2 week wait referrals resulting in cancer diagnosis); detection rate (proportion of cancers referred through the two week wait system); and then analyse and understand the data in comparison.

The results showed significant differences in the way GP practices use the two week wait referral system for the diagnosis of cancer. Relationships between the three measures demonstrate complex patterns in practice referrals; as expected, increases in referral rate correspond to decreases in conversion rates and increases in detection rates. However, surprisingly, conversion and detection rates appear to be positively correlated.

However it was also pointed out that approximately 25% of people with cancer don’t have cancer waiting time records recorded! This may be due to a number of different reasons; bad recording; rare cancers being recorded as a simple alternative; or missed data.

It was also thought that this report, and ongoing reporting, could be used to identify trends in GP practices, particular practices of individual GPs within a practice and then any training/support/advice that needs to be addressed at a GP practice level as well as a higher level in regard to commissioning.

One other statistic that stuck out for me from this presentation… 23% of cancer cases are diagnosed via Accident & Emergency and 24% of cancer cases are diagnosed via GP. Surely GP percentage should be much much bigger?


Plenary Session: Thames Cancer Registry at 50 years

In celebration of the first 50 years of Thames Cancer Registry, there has been a report prepared, also online, that is a really valuable source of information and data.

We also saw a film that was made by a couple of the employees about the history of Thames Cancer Registry.

Worth a look to understand that data has been collected for the last 50 years, how the ideas and planning that was put in place all those years ago still stands proving the forward thinking of the TCR.

Maggie Barker, Medical Director and also Henrik Moller presented some of the report details and story behind TCR. Followed later by a fun presentation by Dick Skeet with memories of the TCR (he’s featured in the film!).


Hormone receptor status and ethnicity in women with breast cancer in North East London
Ruth H Jack, Thames Cancer Registry

Ruth presented from data in NE London with a Breast Cancer diagnosis between 2005-2007. 2,417 women were diagnosed. 128 of them were diagnosed with triple negative form of breast cancer.

Her data also showed that TNBC was more likely in younger women. Also there was an increase in deprived areas.

Ruth spoke about more information being needed and research in this area with a particular focus on obtaining relevant data from all the ethnic groups.



Plenary Session: Supporting Commissioning
Chair – Professor Sir Mike Richards, National Cancer Director for England

Commissioning in the new NHS
Stephen Parsons, Director, National Cancer Action Team

Stephen spoke of our wishes to commission cancer services that are the best in the world. We must achieve this and are moving toward it however aware that we have a long way to go. He did acknowledge the wonderful work that has been presented at the conference in collating and managing data so that we can utilise these tools to improve cancer services so that we not only lead the way but excel in our services.

Effective commissioning: There are concerns that there may be variability and quality of commissioning between areas however he believes that by providing and learning from information available to us even today in the data sets collected, and ensuring data, reporting and information is of a high quality, we can achieve effective commissioning.

The move toward information being in one central place is driving the views toward better outcomes.

He spoke of a Commissioning support pack for all, which will including information which MUST be informing, engaging, empowering and timely.

The information to be collated should include the incidence of cancer; prevalence and survival; different aspects and outcomes; and to share information such as expenditure and variation between the PCTs as they stand now.

There should also always be comparisons made with regard to cost effective treatments. Not only the price of a treatment but the effectiveness of using that treatment over another ie looking at survival and outcomes too.

He also spoke of GP consortia to be made up of Clinical Commissioning groups which in turn are made up of a variety of health professionals not just GPs.

Also Clinical Senates – perhaps 15 of them across the country. These Senates will therefore cross different consortia and be able to share learnings and information and indeed to have some power in ‘bulk buying’!

The question was asked one more time about patient involvement in commissioning. Stephen advised that it was his understanding that patient/users will be involved in both the Clinical Commissioning Groups and the Clinical Senate levels.

The questions that NCAT have posed about commissioning:

What are the key facts/issues that commissioners should know?
What do they feel is most important?
There are a number of myths that need to be dispelled surrounding commissioning.

Key messages that need to be put across to the GP consortia (and understood!)

  • incidence of cancer is rising
  • people are dying unnecessarily
  • want to save 5,000 lives from cancer but in order to excel we should be saving more than 10,000
  • late diagnosis is a major factor underlying bad survival rates
  • 6% of NHS budget is still being allocated to cancer services – this percentage has been the same for many years (whilst other budgets are being cut, cancer services remains at 6%)
  • Not all cancer interventions are expensive

How to support commissioners

  • save lives
  • improve quality of life and care – patient experience
  • optimal value for money

Saving Lives

  • Public awareness, early presentation; early diagnosis
  • Supporting GPs to investigate and refer
  • GPs to have more diagnostic equipment together with training and information

Improve quality of life and care – patient experience

  • Prevent unnecessary hospital admissions
  • Reduce length of stay in hospital
  • Improve access to Cancer Nurse Specialists
  • Patient information prescriptions and training on how to use them for health professionals, information officers and the public

Optimal value for money

  • Invest in early diagnosis
  • Reduce emergency admissions
  • Enhanced recovery programmes and self-management

Benchmarking information – utilising data and reports so that there are service profiles upon which GP commissioners can make changes, learn from etc

Primary focus of all NHS funded care to provide high quality care and improved outcomes.

Commission and deliver cancer services that match best in the world

The Challenges ahead are significant but the prize is greater!


Cost of skin cancer in England, including projection to 2020
Dr Julia Verne, South West Public Health Observatory

Julia described how difficult it was to obtain good data with regard to skin care and melanoma. The main reason for this is that often GPs will deal with the removal of moles or skin tags etc and these won’t necessarily be recorded correctly. GPs and local health care professionals are being encouraged to record this data more effectively.

However one thing that was plainly obvious… skin cancer is on the rise in the UK. More work has to be done in the awareness arena to ensure that people in the UK are aware of the dangers of using a sunbed but also tanning without any sun protection.

The best place for information is which provides information about awareness campaigns, symptom checker, skin cancer profiles in the UK etc. Worth a look and perhaps this is something you can share with local groups such as school and colleges in your area.


Variation of surgical resection for lung cancer in relation to survival: population-based study in England 2004-2006
Professor Henrik Moller, Thames Cancer Registry
Henrik presented information and statistics regarding survival following surgery for lung cancer. The full report is available on the Thames Cancer Registry site.


Plenary Session: Early detection

Chair – Sara Hiom, Director of Health Information and Cancer Data, Cancer Research UK

Cancer Intelligence – a vision for the future
Professor Sir Mike Richards, National Cancer Director for England

  • completeness and timeliness
  • staging, only 40% of this is recorded. We should be achieving at least 70%
  • pathology reporting is variable or poor. There needs to be more standards and better/clearer reporting
  • Imaging. Again this varies and needs to be clearer and more standards adhered to
  • Chemotherapy. This data is not yet being collated at a national level – 100% of this need to be collated nationally
  • We’re only just linking our data with primary care units and not in all locations. This needs to improve significantly and also data to be more standardised as well as clear and complete.

There is little known or reported about

  • comorbidity
  • late affects
  • quality of life
  • recurrences/secondaries/metasteses

“There is an increased demand on complete and timely intelligence”

Cancer is leading in the information revolution in health but still can be improved”


Promoting early symptomatic presentation of breast cancer: implementing an evidence-based intervention in routine clinical practice
Dr Lindsay Forbes, King’s College London

Lindsay reconfirmed what we should all know, earlier diagnosis of breast cancer (like all cancers) is a key factor in our survival rates. The need to promote early symptomatic presentation is something we should all be participating in. How can we do that?

  • screening programmes
  • earlier referral to diagnostic tests
  • awareness of cancer and encourage earlier presentation

Health professionals delivering interventions to promote early presentation for breast cancer in older women.

20-30% of women delay presentation >3 months (1999)
there is a clear link between delay in diagnosis and survival for breast cancer (1999)
2/3 of women present symptomatically
>500 breast cancer deaths per year for women presenting >3 months

Older women think their risk of breast cancer is lower – wrong! The risk increases with age. We should encourage older women to go for their regular mammograms – so many skip appointments with the thought that they don’t need them and their risk is lower!


Additional sites and sources of information:

edric (Fighting cancer with information)
ukacr – UK association of cancer registries