Cancer Action Plan: annual progress report 2024-2025

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 just over two years, it is too early for any impact of the strategy to be reflected in most high-level 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).

Anticipated 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. Because of the delays explained below, it is not yet known when this dataset will be updated.
• Mortality: the most recent cancer mortality statistics were published in August 2025. They cover deaths caused by cancer up to the end of 2022.

Neither dataset reflects any particular impact arising from the current Cancer Action Plan, which began in 2023, but can be treated as baselines from which to measure progress over the course of the Cancer Strategy. Updates of both were delayed because of the need to update the 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. These data are now available for use. New Data Zone boundaries were introduced in late 2024. They have been applied to the new mortality data, and new time series data have been 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).

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

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

Progress Update:

PHS has been focused on developing new Scottish Burden of Disease projections of the prevalence of lung cancer, colorectal cancer and female breast cancer over the next two decades. The latest projections up to 2044 were published in June 2025. Therefore, an updated Disability Adjusted Life Year (DALY) rate for cancers is not available at this time. PHS aims to update the full Scottish Burden of Disease estimates for 2024 during the 2025-26 financial year. This update will enable a comparison of progress on 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).

Anticipated 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 August 2025, covering the period January 1997 up to the end of 2022. As with Headline Indicator A, this dataset does not reflect any impact arising from the current Cancer Action Plan. 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 2022.

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).

Anticipated data source: National Cancer Waiting Times Data.

Indicator Owner: Public Health Scotland

Progress Update:

At time of report writing, the most recent cancer waiting times statistics were published in June 2025. The publication 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 March 2025. The data show a slight decrease in the percentage of eligible patients starting first cancer treatment following referral for an urgent suspicion of cancer within 62 days, and no change in the percentage of patients waiting longer than 31 days from decision to treat to first cancer treatment.

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.

68.9% of patients started treatment within the 62-day standard. This compares 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. This compares 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.

Anticipated 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:

Curative treatment: PHS assessed existing national datasets within NHS Scotland to determine if ‘curative’ treatment can be reliably captured and measured accurately over time. They determined that the Scottish Cancer Registry (SCR) was the most comprehensive and appropriate source to provide high-quality recording of curative treatment. Examination of completeness and accuracy of several potential data variables led to the use of the ‘therapy objectives marker’ to measure the ‘curative’ intent of the therapy. This is assigned to the patient's registration record once full clinical/ pathological staging is known. Consistency of coding of this marker was explored for different stages, treatment combinations and over time. Generally, ’curative’ intent can be captured consistently using the ‘therapy objectives marker’ variable in the SCR. However, for some cancer types, registration guidelines may lead to a different treatment intent compared with that determined from a clinical point of view. Furthermore, whether a patient receives a ‘curative’ treatment depends both on stage at diagnosis and on the availability of suitable treatments. Due to the variability in treatment intent across different cancer types and stages, the proportion of patients given ‘curative’ intent needs to be presented separately for 16 cancer types.

The first curative treatment data was published in August 2025 as part of an ‘official statistics in development’ release, titled Routes to Cancer Diagnosis, Cancer Stage and Curative Treatment for Cancer Information to Support Visions from the Cancer Strategy. The data measures the proportion of patients for 16 cancer types combined receiving treatments classified as of ‘curative intent’: treatment that aims to eliminate the cancer and achieve a long-term remission or a cure. The data showed similar proportions of patients receiving treatment of curative intent in 2021 (53.6%) and 2022 (55.1%). This data can be treated as a baseline from which to measure progress over the course of the Cancer Strategy. Data is also available for each of the 16 cancer types. Generally, use of treatments with curative intent decreased with increasing (later) stage at diagnosis, but with differences between cancer types, and some differences by cancer type in terms of the percentage change between 2021 and 2022.

Cancer surgery: PHS are currently assessing data sources for surgery data from existing sources including SMR01 (Acute hospital records), Quality Performance Indicators (QPIs) audit data and NTIG and Multi-Disciplinary Team (MDT) data via various projects. PHS expects to write an options paper once these pilots are complete later in 2025.

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.

Anticipated 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 published in September 2024. 8,800 people 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. Of those invited, 8,640 people were eligible to complete the survey and 4,540 people responded, giving a response rate of 53%. Patients rated their overall experience of cancer care at 9.1 on a scale from 0 to 10, with 95% of respondents expressing a positive view of the care they received. This was the same as in 2018 and slightly higher than in 2015 (94%). 96% felt they were treated with dignity and respect by the healthcare professionals always or most of the time, slightly lower than in 2018 (97%).

Care Opinion, a website where people can share their experience of health or care services, continues to act as a measure of ‘Excellent Care’. New Patient Reported Experience Measures (PREMs) have not yet been added to Care Opinion for use by NHS Scotland. However, this work remains active, and we will incorporate these data into the monthly review process for cancer as soon as possible. To increase the validity of measures garnered through Care Opinion we will seek to increase the spread and uptake of Care Opinion across Scotland. In the year to June 2023, an average 34 cancer stories were reported per month. During the following year, there were on average 51 stories published each month. In 2024-25, this has remained constant at 50 stories per month. Care Opinion can provide more frequent information than a headline indicator and is a valuable additional data 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.

Anticipated 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. Collecting PROMs via clinical pathways is still being explored, with progress over the last year in prostate cancer and lymphoedema. Inclusion of EQ-5D (a standardised instrument to describe health-related quality of life) via the Improving the Cancer Journey initiative was explored but did not prove feasible. Data validation and linkage has also been trialled with three pilot sites using the electronic Holistic Needs Assessment. Findings from this work are expected to be reported in 2025. However, it appears that technical limitations will not permit expansion of this approach. As such, routine collection and reporting of quality-of-life data at multiple pathway points for each individual diagnosed with cancer using this particular approach cannot be delivered at present.

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.

Anticipated 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: EDGE is a global clinical research management system which is used in Scotland to manage recruitment to clinical trials and research studies. In the last year, work has been undertaken to assess the quality of data available in EDGE on Scottish participants in cancer clinical trials. This analysis has considerably enhanced our understanding of the clinical trials data landscape and data quality. It has highlighted specific areas where data improvement is needed before any robust analysis of equity of access can be undertaken. Work will continue to refine the data analysis and address the data improvement priorities.

PHS Cancer Intelligence Platform (CIP): this is currently live internally within the PHS Cancer & Adult Screening Team. CIP now has cancer waiting times (used for publications), pathology, deaths, cancer registrations, cancer staging information and secondary care (acute SMR01) used for analysis. In addition, CIP holds the necessary reference files (such as populations, geographical lookups, deprivation data). CIP testing has been completed allowing additional datasets to be migrated to production such as cancer registrations, mortality data, acute hospital data, cancer staging and pathology data. Work is underway to add Outpatients (SMR00) and Prescribing data, as well as data from the three national cancer screening programmes via the Screening Intelligence Platform being developed in parallel to CIP with NHS NSS. The Cancer Analysts & Peers Support Group (CAPs) has begun pulling together a matrix to capture data sources, software and analytical skills and capacity across NHS Boards to help understand the analytical landscape.

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.

Anticipated 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 the need to update the Mid-Year Population Estimates following the 2022 Census. Cancer mortality and cancer incidence data have been published by deprivation for 2022 and so do not reflect any impact arising from the current Cancer Action Plan. Time series data by deprivation is not yet available.