Cancer action plan: progress report 1 - June 2023 to March 2024

Appendix A Headline Indicators

The Cancer Strategy (2023-2033) and Cancer Action Plan (2023-2026) Monitoring and Evaluation Framework, published in August 2023, included a set of Headline Indicators. These metrics were developed to enable measurement of progress towards the intended high-level outcomes and vision for the ten-year Cancer Strategy. Some are indicators in development, which will be defined and developed during the Strategy’s first Cancer Action Plan (2023-2026). The detailed metadata for each indicator can be found in Appendix 2 of the framework. The framework committed to reviewing these indicators annually, and an update for each indicator is provided below. It is important to highlight that, after only one year, it is too early for any impact of the strategy to be reflected in these indicators.

Headline Indicator A

Strategic Vision: By 2033 we will improve cancer survival.

Indicators:

• Survival: estimates of overall survival and age-standardised net survival at 1-year and 5-years.
• Mortality: age-adjusted mortality rates to capture changes in both incidence (rates) and net survival.

Methods of data collection: Extraction of cancer registration data (PHS), and population and deaths data (NRS).

Data sources: Cancer registration (Scottish Cancer Registry) and NRS population and deaths datasets.

Indicator Owner: Public Health Scotland

Progress Update:

• Survival: the most recent cancer survival statistics were published in May 2023, covering people diagnosed with cancer during 2018 to 2020, and including discussion of the impact of the COVID-19 pandemic.
• Mortality: the most recent cancer mortality statistics were published in October 2022, covering deaths caused by cancer up to the end of 2021.

Updates of both sets of statistics have been delayed (until later in 2024 or 2025) because of delays to the production by National Records of Scotland (NRS) of Mid-Year Population Estimates following the 2022 Census. This process requires additional and more complex work immediately following a Census compared with the annual estimates released between Census years. New Data Zone boundaries are also due to be introduced in 2025; these will then be applied to the new estimates and new time series data will be generated.

Headline Indicator B

Outcome: Reduced relative population burden of disease

Indicator(s): Burden of disease (disability adjusted life years) relative to all causes of other disease, infection, and injury in the overall population.

Method(s) of data collection: Extraction of electronic health records (Scottish Morbidity Records and National Records of Scotland Vital Events).

Data source(s): Scottish Burden of Disease (SBoD) study dataset.

Indicator Owner: Public Health Scotland (Scottish Burden of Disease)

Progress Update:

PHS are currently focusing on developing new Scottish Burden of Disease projections and risk factor analysis and therefore an updated Disability Adjusted Life Year (DALY) rate for cancers is not available at this time. PHS aim to update the full Scottish Burden of Disease estimates for 2023 during the 2024-25 fiscal year. This update will enable a comparison of progress in this indicator, as well as comparing the burden from cancers with that of other major diseases.

Headline Indicator C

Outcome: Reduced later stage diagnosis

Indicator(s): Diagnosis at disease stages III and IV (incidence by stage for 16 Cancers).

Method(s) of data collection: Extraction of Cancer registration data (PHS).

Data source(s): Cancer registrations. Cancer incidence data is published by PHS.

Indicator Owner: Public Health Scotland

Progress Update:

Incidence: the most recent annual update of cancer incidence statistics were published in March 2023, covering the period January 1997 up to the end of 2021. Alongside this update, PHS published a new Excel file containing counts and percentages for 16 cancers broken down by stage of diagnosis and SIMD 2020 quintile for incidence year 2021. This publication provides baseline data for the Cancer Strategy.

The next update of these statistics has been delayed (until later in 2024 or 2025) because of delays to the production of Mid-Year Population Estimates following the 2022 Census. Please refer to Headline Indicator A for further details.

Headline Indicator D

Outcome: Timely access to treatment

Indicators: Cancer waiting times.

Method of data collection: Cancer waiting times (CWT) statistics – adjusted and unadjusted waits (PHS).

Data source: National Cancer Waiting Times Data.

Indicator Owner: Public Health Scotland

Progress Update:

The most recent Cancer Waiting Times Statistics report was published in March 2024. It reports on two National Standards on how long patients waited for their first cancer treatment and covers patients who started their first treatment in the quarter ending 31 December 2023.

The 62-day standard states that 95% of eligible patients should wait no longer than 62 days from urgent suspicion of cancer referral to first cancer treatment.

71.1% of patients started treatment within the 62-day standard, compared with 69.4% of patients in the quarter ending 31 March 2023 (just before the start of the current Cancer Action Plan).

The 31-day standard states that 95% of eligible patients should wait no longer than 31 days from decision to treat to first cancer treatment.

94.1% of patients started treatment within the 31-day standard, compared with 94.0% of patients in the quarter ending 31 March 2023 (just before the start of the current Cancer Action Plan).

Headline Indicator E

Outcome: More people receiving curative treatment

Indicator: In development.

Data Development: Data development is an action in the first Action Plan.

Data Sources: Several datasets are being explored in the development of this indicator, in addition to those originally highlighted in the Monitoring and Evaluation Framework. These include the Scottish Cancer Registry (SCR); The national Systemic Anti-Cancer Therapy (SACT) dataset, which combines and standardises data from the five local instances of the Chemotherapy Electronic Prescribing and Administration Systems (CEPAS) ChemoCare in Scotland; the national Radiotherapy Dataset (RTDS); Cancer Audit data; and the National Theatre Implementation Group (NTIG) dataset (an aggregated extract of data from the Theatre systems used across Scotland).

Indicator Owner: Public Health Scotland

Progress Update:

Measuring curative treatment is challenging with currently available data. The Scottish Cancer Registry has a field which indicates initial treatment intent, which is currently being validated to determine whether it can be used as the indicator, Additionally, some relevant data are available for SACT and radiotherapy activity on treatment intent. Surgery, however, remains the single most effective treatment for solid tumour cancers. Specific data on surgical activity for cancer at a patient-level is not routinely collected by PHS, but at an aggregate level in NTIG. PHS will develop a business case to expand the NTIG submission to include patient identifiers to provide the required surgical data at Chi-linkable level. PHS has started investigating whether options for using SACT, radiotherapy, and the cancer audit data can function as proxy indicators for overall treatment while investigating the new data collection for cancer surgery. Measurement of this headline indicator will be agreed by October 2024.

Headline Indicator F

Outcome: Improved experience of services, across all areas of care

Indicator(s): In development.

Data Development: Measurement will be defined and developed during the first Action Plan. A new Scottish Cancer Patient Experience Survey (SCPES) will be completed in 2024 and will be used as the basis for measuring experience of services and care. Other potential sources of data on experience include Care Opinion, and Patient Reported Experience Measures (PREMs) collected as part of specific evaluation activities.

Data Source(s): SCPES or equivalent survey dataset.

Indicator Owner: Scottish Government Cancer and Rehabilitation Policy

Progress Update:

The Scottish Cancer Patient Experience Survey (SCPES) 2024 was launched in February 2024. 8,800 people who were aged 16 years or older and previously diagnosed with cancer were invited to share their experiences of care, ranging from when they first thought something might be wrong, to post-treatment follow-up. Fieldwork was completed at the end of April 2024, with findings expected to be reported in September 2024.

Care Opinion, a website where people can share their experience of health or care services, will also act as a measure of ‘Excellent Care’. New Patient Reported Experience Measures (PREMs) are also likely to be added to Care Opinion during the coming year and we will look to incorporate these into the monthly review process. To increase the validity of measures garnered through Care Opinion we will seek to increase the spread and uptake of Care Opinion across Scotland. As of June 2023, an average 34 cancer stories were reported per month. Care Opinion can provide more frequent information than a headline indicator and is a valuable additional source.

Headline Indicator G

Outcome: Optimised quality of life for each individual

Indicator: In development.

Data Development: Measurement will be defined and developed during the first Action Plan. Potential methods include building on available data such as Euro-QoL (EQ-5D), pulling data nationally from Holistic Needs Assessments.

Data Sources: Survey results, Holistic Needs Assessment reports, Patient Reported Outcome Measures (PROMs).

Indicator Owner: Scottish Government Cancer and Rehabilitation Policy

Progress Update:

Work is ongoing to incorporate data collection on quality of life into routine ways of working. Examples could include EQ-5D (a standardized instrument to describe health-related quality of life) collected via the Improving the Cancer Journey initiative; and PROMs collected via prostate cancer clinical pathways. Data validation and linkage is also underway, with pilot projects focused on Holistic Needs Assessments undertaken with people diagnosed with cancer. However, at present, ways of working and technical limitations do not permit routine collection and reporting of quality-of-life data at multiple pathway points for each individual diagnosed with cancer.

Headline Indicator H

Outcome: Embedded research, innovation, and data capture in all services

Indicator(s): In development.

Data Development: Measurement will be defined and developed during the first

action plan. Options include looking at access to clinical trials using data from the

EDGE clinical research management system; or measuring the range of data

available on the PHS Cancer Intelligence Platform. This work will build on recommendations by the Equity of Access Short Life Working Group.

Data Source(s): Clinical Trials data; PHS Cancer Intelligence Platform.

Indicator Owners: Scottish Government Chief Scientist Office (Clinical Trials)

Public Health Scotland (Cancer Intelligence Platform)

Progress Update:

Clinical trials: work is ongoing to establish the appropriate indicators for this outcome.

PHS Cancer Intelligence Platform: Work is ongoing to establish the indicator during the lifetime of the first Action Plan. The CIP is currently live internally within the PHS Cancer & Adult Screening Team. By July 2024, this will contain five datasets relevant to cancer (the cancer registry data, cancer waits, death data, pathology data and all acute hospital discharges (SMR01). In addition, CIP holds the necessary reference files (such as populations, geographical lookups, deprivation data). The intention is that three datasets will be added annually thereafter as these datasets become available to PHS.

Headline Indicator I

Vision: Equitably accessible care

Cross-cutting aim: Reduced health inequalities in all areas above

Indicators: In line with this cross-cutting aim, wherever possible, we will monitor data broken down by equalities, socioeconomic and geographic characteristics. This will include analysis of sex and age group, SIMD quintile, and geography if possible, subject to statistical disclosure control.

Data Source(s):

Annual updates of the long-term monitoring of health inequalities are published by the Scottish Government, Scottish Cancer Registry (SCR) and Public Health Scotland. Technical documentation about the methodology of long-term monitoring of health inequalities has been published by the Scottish Government.

Indicator Owner: Public Health Scotland

Progress Update: development of this indicator has been delayed because of delays to the production by NRS of Mid-Year Population Estimates following the 2022 Census. Please refer to Headline Indicator A for further details.