Written evidence submitted by Mr John Butler, Clinical Lead, International Cancer Benchmarking Partnership (CSV0046)

 

 

Inquiry questions

  1. Why are cancer outcomes (like survival from cancer) in England – worse than similar countries internationally? 
  2. How will covid-19 affect efforts to catch up to the best countries? 
  3. Will putting the NHS Long Term Plan into practice mean England catches up with the best countries internationally? 

Introduction

I welcome the opportunity to respond to the Health and Social Care Select Committee’s inquiry into ‘How can the Government improve cancer outcomes in England’. I have addressed one of the key questions posed by the Committee in the submission below, together with several recommendations to improve cancer services during and beyond this period.

I am writing in a personal capacity from my experience as the clinical lead for the International Cancer Benchmarking Partnership (ICBP) since its inception in 2009, as a consultant cancer surgeon in the NHS since 2014 and holding a variety of regional leadership positions in my specialist field of gynaecological cancers. I am an author of over 80 peer reviewed publications mainly focusing on cancer survival and cancer treatments.

Cancer survival is a key measure of the effectiveness of health care systems. This is due to registration of both the date of a cancer diagnosis and death by health and government agencies. Since the 1990s it has been established that UK cancer survival is inferior to many similar high-income countries. The ICBP was initiated by the Department of Health in 2019 to explore not only what the differences in survival are but crucially why there is lower survival in England and the UK. The ICBP produces high quality research to help identify best international practice, and generate insights needed for policy and practice change. This will help to enable optimisation of cancer services and improvement of outcomes for cancer patients.

Our most recent data reports that survival in England is around 10 to 15 years behind leading countries.

About the ICBP

The ICBP is a unique and innovative collaboration that brings together clinicians, policymakers, researchers and data experts across the world. It aims to measure international variation in cancer survival, incidence and mortality, as well as identify factors that might be driving these differences. It was initiated by the Department of Health, and England has been a partner since its inception.

The ICBP produces high quality research to help identify best international practice, and generate insights needed for policy and practice change. This will help to enable optimisation of cancer services and improvement of outcomes for cancer patients.

 

 

Summary of Key Points

 

Cancer control progress (incidence, mortality, survival) has improved across the ICBP jurisdictions for the last 20 years. The extent of these improvements varies across tumour site and jurisdiction.  For some nations, notably the UK, New Zealand and Ireland survival lags behind Australia, Canada and Norway. Reasons for this are complex, multifactorial and are likely to span the whole cancer continuum. Whilst England has been making improvements in cancer survival in recent decades, analysis from the International Cancer Benchmarking Partnership shows that England lags behind many of those countries with comparable levels of wealth, healthcare systems and robust data (including Australia, Norway and Canada).

 

We answer the main question in brief here, but a more comprehensive overview of the evidence the ICBP has produced for England can be found in the Appendix.

             

  1. Why are cancer outcomes (like survival from cancer) in England – worse than similar countries internationally? 

There appear to be three main factors contributing to lower cancer survival in the England; Later stage at diagnosis, sub-optimal treatment, and inferior care for older patients. For different cancers the contribution of these factors will vary but it is clear that a policy focus on earlier diagnosis alone is unlikely to result in the UK survival gap closing rapidly.

In broad terms England’s cancer survival is 10 to 15 years behind leading nations therefore it’s important to establish where significant variations exist in the cancer pathways and treatment.

Later Stage at Diagnosis

ICBP research has reported that population awareness of cancer symptoms is similar in England to leading countries, there is however greater concern of “wasting the doctor’s time”. When we examined primary care referral there was a greater threshold for referral for patients in England (ICBP Modules 2 and 3). These may explain some delays in cancer diagnosis and therefore patients being diagnosed at later stages.

Of concern are patients diagnosed following emergency presentation who tend to have more advanced disease with lower survival.

The stage of a cancer guides the treatment that is offered and also informs the prognosis. Diagnosing cancer at earlier stage will therefore improve survival providing that a) the stage is accurate and b) effective treatment is given.

For example, over 20% of Lung Cancer cases in Australia and Canada are diagnosed with stage 1 disease compared to around 14% in the UK indicating that access to timely diagnostics particularly imaging and workforce capacity is likely to be a driver.

 

Stage is determined by a combination of imaging and pathology. In particular greater PET scan usage and more radical surgery may detect more advanced stage disease not found by routine scans or investigations. PET scan capacity in England has lagged behind leading countries - for example Denmark in 2017 had 8 times as many PET scanners per head compared to England. In Denmark only 8.2% of patients are diagnosed at Stage 1 however the 3 year survival of these patients in Denmark is 77% compared to 64% in the UK. The stage specific survival in the UK is low for stage 1, 2 and 3 suggesting that there may be inadequate evaluation of stage possibly explained by lower PET scan usage and surgery rates.

 

This is important from a policy perspective as early diagnosis initiatives coupled with improved imaging and pathology will improve outcomes but this may not translate into great improvements in the stage distribution. It is therefore vital that any target on the proportion of patients diagnosed at early stage is coupled with benchmarked treatment and survival data.

Inferior treatment

If England was amongst the best in the world in cancer treatment, we would expect the stage specific survival to be high. We know that stage for stage, patients in the UK have poorer survival than patients in other countries, this is especially true for the most advanced cancers. For example, Ovarian Cancer is usually diagnosed at advanced stage and survival determined by access to chemotherapy and high-quality complex surgery. In Australia and Norway 3 year survival for patients with advanced disease is 47% compared to 33% in the UK. This is a result of access to optimal treatment including intensive care capacity, complex surgery, and chemotherapy.

A key driver of improved treatments is high quality audit and performance indicators and lung cancer outcomes in particular in England have improved following the initiation of the National Lung Cancer Audit in 2004.

 

Inferior care for older patients

Although survival in England is low this is most evident for older populations – for example half of women in Norway with advanced ovarian cancer aged 65 to 74 can expect to survive three years compared to only a third of British women of this age. These differences are likely to be driven by the ability of a healthcare system to deal with increasing co-morbidities associated with ageing and in particular surgical and intensive care capacity and quality of treatments. Hospital and social care capacity are also likely to be important factors as older patients receiving cancer treatment often have complex medical and social needs.

 

  1. How will covid-19 affect efforts to catch up to the best countries?

Prior to covid-19 encouraging progress in cancer survival in England has been made but not moving fast enough to catch-up. We don’t know the impact of COVID yet on outcomes, either in England or abroad.

 

It’s possible, though too early to determine, that other jurisdictions in the ICBP were able to draw on greater resilience than England/UK, potentially meaning that any negative impacts of COVID on cancer outcomes will not be universally or equally felt.

The ICBP is currently exploring how to measure the impact of COVID-19 on cancer services and cancer outcomes across the 7 countries it studies.

Work has taken place already to capture a broad overview of the impacts of COVID, a short survey was disseminated across the ICBP countries in Dec 2020-Feb 2021, some themes emerged:

 

Conclusions

Over its first 10 years the ICBP has examined how and why cancer survival in England is low.

Improved survival requires sustained investment in the cancer workforce in particularly diagnostic capacity.

Stage at diagnosis is an important metric but must be examined alongside survival, ideally through national audits.

International benchmarking is vital to evaluate and understand survival variation. It could be considered brave to enter into international comparisons, particularly when you know or suspect patients in your country fare worse than elsewhere. But the value gained in terms of knowing what you’re dealing with, identifying and sharing good practice and catalysing action can be transformative for patients.

The ICBP initiated by the Department of Health has had a major impact in not only understanding drivers of low survival but how this can be improved so that England can match the best in the world. Further investment should be made in international comparisons and benchmarking to both evaluate progress made and help improve cancer control in England.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Appendix: ICBP Publications and Summaries

 

Contents

Evidence is organised by area of research below, includes a summary of key findings and links to the publications and communication materials

  1. Progress on Incidence, Mortality and Survival
  2. Stage Distribution
  3. Survival by Stage
  4. Exploratory Research
    1. Access to Diagnostics
    2. Access to Treatments
    3. Health Systems
    4. Patient Pathways
  1. Progress on Incidence, Mortality and Survival

Measuring cancer survival internationally is complex and is a key indicator of health care system performance. There are significant challenges in data availability and comparability to be overcome, as well as the passage of time that is required by virtue of assessing how long someone survives after a cancer diagnosis. Therefore, the most recently available international survival data refer to patients diagnosed several years ago. The data are no less important for this, particularly when it is possible to examine trends in data over time.

 

The International Agency for Research on Cancer (IARC) was commissioned to help deliver ICBP benchmarking research, reporting on the following metrics for 21 jurisdictions in 7 high-income countries (Australia, Canada, New Zealand, Ireland, Norway, Denmark and the UK):  

for 7 cancer sites (colon, rectum, lung, stomach, ovary, oesophagus and pancreas) for the period 1995-2014

 

 

International survival benchmarking

 

This research, entitled ICBP SurvMark-2, is the second phase of research for the ICBP. Population-based estimates of cancer survival, incidence and mortality provide valuable insights to help develop policy and practice to ensure effective diagnosis, treatment and clinical care of cancer.  This is the first study of its kind that has triangulated survival data with changes in incidence and mortality rates to assess progress in cancer control. We focus here on summarising survival data but have added a reference to a deep dive on colorectal cancer incidence below.

             

1 and 5-year survival estimates increased for all cancer sites studied over 1995-2014 across all countries. 1-year survival estimates were higher for all cancers in Australia, Canada and Norway, followed by Denmark, Ireland, New Zealand and the UK for the most recent 5-year period (2010-2014). This was similar for 5-year survival estimates with higher survival seen in Australia (except for lung in Canada and ovarian in Norway) and lower survival seen in the UK (except for oesophageal in Denmark and ovarian in Ireland).    

 

By exploring trends in incidence, survival and mortality, progress was seen in cancer control for all countries in stomach, colon, ovarian and lung cancer (in males only).   

 

International differences in survival continue to exist for those cancers associated with poorer prognosis. Pancreatic cancer has the lowest survival amongst the 7 cancer sites studied, however there were increases in survival in most countries.  

 

UK Findings   

For the most recent period of analysis (2010-2014), the UK consistently had lower 1-year and 5-year survival estimates compared to the other ICBP countries. Within this period, the UK’s highest survival statistics were for 1-year oesophageal cancer survival, ranking 4th out of the 7 countries involved.   

 

Progress has been made when comparing the absolute change in survival from the 1995-1999 period to 2010-2014 period. Most notably, this is seen in 1-year oesophageal and ovarian cancer survival, which has increased over 15 percentage points from 1995-1999 to 2010-2014. This equates to an increase in 1-year survival from 29.8% to 46.4% in oesophageal and 55.5% to 70.3% in ovarian.  5-year rectal cancer survival has also seen a substantial improvement – increasing more than 14 percentage points from 1995-1999 to 2010-2014 from 47.8% to 62.1%.   

 

England generally had higher 1-year survival estimates (from 2010-2014 period) compared to the other UK devolved nations – this being true in 5 out of 7 cancer sites (stomach, rectum, pancreas, lung and ovary). But, compared to international counterparts England had among the lowest 1 and 5-year survival.

 

England also consistently had the greatest absolute change in survival estimates for 5-year survival estimates in all cancer sites from 1995-1999 period to 2010-2014 period (see appendix 1 for full devolved nation breakdown). Greatest improvements for 1-year cancer survival were seen in oesophageal cancer where Wales had an increase of 17.2 percentage points. For 5-year survival, greatest improvement was seen in rectal cancer where England had a survival increase of 14.6 percentage points.   

The paper also reported survival for two ages groups, <75 years and >75 years. Overall differences in 5-year survival across the countries were greater among patients >75 years than those < 75 years. Results were not reported separately for England, but the UK reported a mixed picture for this age group, reporting the lowest 5-year survival for those 75+ for colon, rectal and stomach cancers, and amongst the lowest-middle of the pack for the other cancer sites.

 

 

For more infographics please visit the ICBP webpages

 

 

 

 

References:

Arnold M, Rutherford M, Bardot A et al. Progress in cancer survival, mortality and incidence in seven high-income countries 1995-2014 (ICBP SurvMark-2): a population-based study. Lancet Oncology 2019

Araghi M, Soerjomataram I, Bardot A et al. Changes in colorectal cancer incidence in seven high-income countries: a population-based study. Lancet Gastroenterol Hepatol 2019;4(7): 511-518.

 

  1. Stage at diagnosis

Stage at diagnosis is an important determinant of survival and partly explains international differences in survival. The earlier the stage at which cancer is diagnosed, the better the chance of survival. And so, reducing late stage/advanced stage cancer is a key part of improving outcomes for people affected by cancer. 

 

The ICBP has recently published international stage data on colorectal, lung and ovarian cancers (stomach, pancreatic and oesophageal stage data is soon to follow).

It’s a mixed picture, England do not always have the worst stage distribution. But for the papers that have reported so far, patients in the England were diagnosed at a later stage than those in ‘better performing’ (in terms of survival) countries, notably Australia 

 

Differences are observed in stage distribution, data below focuses on distant/most advanced stage (using SEER classification):

    1. Colon = England has one of the highest proportions of distant stage colon cancers 28.7% (highest Scotland 29%), compared to Australia with the lowest proportion of 21.3%
    2. Rectal = England is middle of the pack reporting 20.4% proportion of distant stage, compared to Australia at 17.7% (not as bad as NZ at 25.8%)
    3. Ovary = distant stage, England 68% is middle of the pack, with Canada the best at 63.7% and Norway the worst 71.3% (2010-14)
    4. Lung =
      1. For non-small cell lung cancer England has one of the highest proportions of distant stage at 56.7% (highest across the 4 nations of the UK), New Zealand is the only jurisdiction to have a higher proportion. Norway have the lowest at 43.3%.
      2. For small cell lung cancer England has one of the highest proportions of distant stage at 80.7% (highest across the 4 nations of the UK), Denmark is the only jurisdiction to have a higher proportion

Catching up with the best performing countries in terms of stage distribution will contribute to narrowing the international cancer survival gap between England and other countries.

Stage data make the case for why improving early diagnosis should continue to be a national priority and emphasises why it’s important we continue to learn from other countries on how to optimise initiatives such as cancer screening and timely recognition and referral of suspected cancer.

ICBP publications reporting stage data on stomach, oesophageal and pancreatic cancers will be reported in the next two months.

 

References:

Cabasag C, Arnold M et al., Exploring variations in ovarian cancer survival by age and stage (ICBP SurvMark-2): A population-based study. Gynecologic Oncology. 2020

Araghi M, Rutherford M et al., Colon and rectal cancer survival in seven high-income countries 2010-2014: variation by age and stage at diagnosis (the ICBP SURVMARK-2 project). Gut. 2020

Araghi M, Arnold M et al., International differences in lung cancer survival by sex, histological type and stage at diagnosis: an ICBP SURVMARK-2 Study. Thorax 2021.

 

 

  1. Survival by Stage

Survival by stage data is a crucial indicator for assessing quality of cancer treatment and care. Broadly, stage for stage, patients in the UK have poorer survival than patients in other countries, this is especially true for the most advanced cancers and our older patients. Given the significance of age for cancer risk, and considering our aging population, planning and managing cancer care for older patients is crucial.

Like the stage distribution data England do not always have the worst survival by stage for every category. But it does show that there is a significant survival variation in some of the stage groups. This indicates there may be differences in access to, or the quality of, treatment given for some specific stage groups.

For example, for ovarian cancer, England has amongst the worst survival by stage for distant stage, at 34% compared to 47% in Norway and Australia.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

For lung cancer, in England we see the biggest difference in survival in the earliest stage group. There is a 14% survival difference between the best performing country, New Zealand (84%), and England (70%).

 

 

 

 

 

 

 

For more infographics please visit the ICBP webpages or contact the Programme Management Team at icbp.org.uk

 

References:

Cabasag C, Arnold M et al., Exploring variations in ovarian cancer survival by age and stage (ICBP SurvMark-2): A population-based study. Gynecologic Oncology. 2020

Araghi M, Rutherford M et al., Colon and rectal cancer survival in seven high-income countries 2010-2014: variation by age and stage at diagnosis (the ICBP SURVMARK-2 project). Gut. 2020

Araghi M, Arnold M et al., International differences in lung cancer survival by sex, histological type and stage at diagnosis: an ICBP SURVMARK-2 Study. Thorax 2021.

 

 

 

 

 

  1. Exploratory Modules

The USP of the ICBP is that it goes further than benchmarking survival and other outcomes data. Exploratory research using a range of methodologies and data aim to investigate factors that may contribute to international differences seen in cancer outcomes.

Phase 1

 

The findings and impacts of Phase 1 of our research can be found on our website and within a impact report we published a few years ago. In summary, Phase 1 results for England:

 

References:

Forbes LJL, Simon AE, Warburton F, et al. Differences in cancer awareness and beliefs between Australia, Canada, Denmark, Norway, Sweden and the UK (the International Cancer Benchmarking Partnership): do they contribute to differences in cancer survival? Brit J Cancer 2013. 108(2):292-300

 

Brown S, Castelli M, Hunter DJ, et al. How might healthcare systems influence speed of cancer diagnosis: A narrative review. Social Science & Medicine 2014. 116:56-63

 

Rose PW, Rubin G, Perera-Salazar R, et al. Explaining variation in cancer survival between 11 jurisdictions in the International Cancer Benchmarking Partnership: a primary care vignette survey. BMJ Open 2015;5: e007212

 

Menon U, Vedsted P, Falborg A et al., Time intervals and routes to diagnosis for lung cancer in 10 jurisdictions: cross-sectional study findings from the International Cancer Benchmarking Partnership (ICBP). BMJ Open 2019

 

Weller D, Menon U, Falborg A, et al. Diagnostic routes and time intervals for patients with colorectal cancer in 10 international jurisdictions; findings from a cross-sectional study from the International Cancer Benchmarking Partnership (ICBP). BMJ Open 2018;8;e023870. doi:10.1136/bmjopen-2018-023870

 

 

Phase 2

 

The Phase 2 research programme built on the findings on the results of Phase 1, by exploring in greater detail areas of the cancer pathway and cancer control as a whole. For Phase 2 in-house research based at Cancer Research UK are delivering two modules exploring international variation in access to diagnostics and treatment. Teams from University College London and London School of Hygiene and Tropical Medicine are delivering two modules on cancer patient pathways and the structure of healthcare systems. These exploratory research modules are currently wrapping up and are due to have their remaining findings published soon.

Access to Diagnostics

Differences in access to diagnostics may be contributing to observed international cancer outcomes. The first area explored in this workstream as differences in access to PET CT, an important diagnostic tool for cancer, particularly lung cancer. Complexity in diagnostic and referral process within primary care, was the second area of interest. Final and preliminary results across projects are below:

 

PET CT

      This study demonstrated variable growth in PET-CT scanner service provision over the 2006-17 period. The UK had the lowest number of scanners as of 2017 (0.08 per 100,000) compared to Denmark with the highest (0.66 per 100,000). Within the UK, England had fewer scanners, compared to Scotland (0.08 and 0.09 per 100,000 respectively), but higher than Northern Ireland (0.05 per 100,000) and Wales (0.04 per 100,000). England had a later drive in acquisition comparably during the study period compared to the other ICBP jurisdictions. The most significant drive in acquisition for England was during the 2014-17 period, in line with outsourcing around 50% of services.  

      This highlights a potential need to increase scanner service capacity and capabilities to serve the respective population of England. However, due to some issues with data availability and accessibility, more robust exploration of service provision metrics and cancer outcomes was not possible.  The PET-CT working group representative for England has been developing a coded renumeration scheme this year (2020), which should improve data coding and capture purposes for future work(s).  

 

Reference:

Lynch C, Reguilon et al., A comparative analysis: international variation in PET-CT service provision in oncology-an International Cancer Benchmarking Partnership study. International Journal for Quality in Health Care 2021

 

Primary Care Complexity

      This study is exploring differences between primary care referral pathways for management of suspected cancer across ICBP jurisdictions

      The team have developed referral pathway schematics and identified some key areas of variation potentially influencing timeliness of diagnosis, efficiency of care and possibly outcomes more generally

      Emerging themes:

Key results for England not yet generated.

Reference: Unpublished, for more information contact icbp.org.uk

 

Access to Treatments

 

This workstream aims to examine how differences in access to optimal treatment are impacting international differences in cancer outcomes. The research team has conducted two studies within this workstream, focusing on ovarian and lung cancer.

Ovarian Cancer Treatment

 

International findings

 

UK findings

 

Reference: Norell C, Butler J et al., Exploring international differences in ovarian cancer treatment: a comparison of clinical practice guidelines and patterns of care. International Journal of Gynaecological Cancer 2020

 

Lung Cancer Treatment

Reference: Unpublished, for more information contact icbp.org.uk

 

Patient Pathways

 

Focus on Emergency Presentations

We know from studies carried out in England that cancers diagnosed via emergency presentations have poorer survival. International variation in the proportion of patients diagnosed as emergencies may be contributing to international survival differences, but evidence about the differences in distribution of emergency presentations is lacking. Evidence upcoming from the ICBP will, for the first-time, report international variation in emergency presentations for cancer. Findings will have implications for the optimisation of the referral and management of suspected cancer patients. Reducing emergency presentations will also be desirable from an improving capacity and efficiency perspective, as these types of presentations typically require urgent management, and often out of hours care which itself may contribute to poorer outcomes.

 

Preliminary data shows that international variation is seen, but how England fares compared to other countries is yet to be finalised. Results due October 2021.

 

Reference: Unpublished, for more information contact icbp.org.uk

 

Health Systems

 

ICBP has taken a closer look at the wider health system attributes that may play a role in international differences in cancer outcomes. Three themes have emerged as vital:

      Primary care & access to diagnostics,

      Specialist care and access to treatment and

      Workforce underpinning the diagnostic and treatment parts of the cancer pathway

International variation in cancer survival is widely attributed to differences in the relative effectiveness of healthcare but it remains unclear what health system features shape cancer care in a way that can improve outcomes.

Work by the ICBP highlights the complexity of factors that contribute to observed improvements in cancer survival across countries and over time. Although the relative importance of different factors varies across settings, research suggests that investment in resources, in the form of staff, infrastructure, and equipment for diagnosis and treatment, and processes, in particular service consolidation and surgical specialisation, are linked to improved quality of care.

Continued improvement in cancer outcomes will require sustained strategic investment in plans to deliver and maintain the workforce engaged in cancer care and in the infrastructure on which they depend. (Seguin et al. 2020)

Strategic plans must recognise that systems for cancer care do not work in isolation from the rest of the health system and a whole systems approach is essential if we are to improve outcomes for an ageing, increasingly multimorbid population.

 

Highlighted quotes from English stakeholders in the capacity paper:

      A common challenge reported across the board was that of meeting the increasing and increasingly complex demand for medical oncology services (“the input you need to keep the patient on treatment and there aren’t enough bodies to do that. There’s not enough bodies to do the demand” [R63 England]).

 

      In England, most respondents expressed concerns about the pressures on NHS hospitals that had built up over recent years, and the lack of spare capacity, which will inevitably affect patient outcomes: “Last year, in the winter bed crisis, [location] ended up cancelling […] major cancer surgery, mostly due to lack of critical care bed space. But then, that was in the midst of a complex flu outbreak and there would always be those sort of bottlenecks. […] usually we manage to get it through, but that will happen, but having spare capacity – we try and run our hospitals and somewhere between 85% and 92% occupancy. And we’re never there, we’re always at much higher – 95%, 96%, some of them 101%” [R65 England]. Pressures such as those described above were not reported everywhere, with respondents from Australia and Norway viewing surgical capacity, in the form of operating theatres and bed numbers, as sufficient.

 

      …respondents from both England and Wales reflected on the impacts that pressures on hospital capacity had on the ability of GPs to refer patients to these services, noting that they would be less likely to send their patients for a scan because they would not expect these to be carried out: “unless we get a change of mindset there, and a change of improving capacity and putting the budget in for that, I’m not sure we will ever get to where Denmark and Australia are heading to” [R61 England]

 

 

References:

Morris M, Landon S et al., Understanding the link between health systems and cancer survival: A novel methodological approach using a system-level conceptual model. Journal of Cancer Policy 2020

Seguin M, Morris M et al., “There’s Not Enough Bodies to Do the Demand:” An Exploration of Key Stakeholder Views on the Role of Health Service Capacity in Shaping Cancer Outcomes in 7 International Cancer Benchmarking Partnership Countries. International Journal of Health Policy and Management 2020

Morris M, Seguin, M et al. Exploring the Role of Leadership in Facilitating Change to Improve Cancer Survival: An Analysis of Experiences in Seven High Income Countries in the International Cancer Benchmarking Partnership (ICBP). International Journal of Health Policy and Management 2021

 

Sept 2021