Macmillan Cancer Support

Since 2012 NDRS and Macmillan Cancer Support have been working together on a wide range of projects to understand the numbers, needs and experiences of people living with cancer in England. 

The workplan has included estimating how many people are living with cancer through analysis of cancer prevalence, and people living with ‘treatable but not curable’ cancer. The partnership aims to build the evidence base on the needs and support requirements of people living with cancer, for example through analysis of Holistic Needs Assessment data and analysis of unplanned care for people following chemotherapy and immunotherapy for lung cancer.  We also aim to understand health inequalities within cancer treatment and care and variation in cancer treatment and care for example, looking at clinical outcomes for cancer patients in England by sexual orientation and English language status.

This work adds to the evidence base on the cancer population directly and through stimulating further research.  Macmillan uses the evidence to set its priorities and help its work with policy makers and service providers so they can better support people living with cancer. Another of the partnership aims is to build on the understanding and awareness of cancer among the general public.      

In our partnership we keep the patient data safe through the NDRS legal permissions and data security frameworks - Collecting and keeping patient data safe - NDRS.

Macmillan also has a similar partnership with Public Health Scotland and has also worked on several key projects with the Welsh Cancer Intelligence and Surveillance Unit and the Northern Ireland Cancer Registry.

You can find out more about the other Macmillan data partnerships on the Macmillan website. 

The partnership has an evolving programme of work but the main areas of focus include:

1. Population-level descriptive evidence on the burden, timing and characteristics of unplanned acute care use following initiation of chemotherapy and immunotherapy in people with lung cancer.
2. Personalised care among people diagnosed with cancer, including developing a better understanding of data on Holistic Needs Assessments (HNAs) and Personalised Care and Support Planning (care planning). Further information about HNAs can be found on the Macmillan website.
3. Describing the treatable but not curable breast cancer population to draw attention to this group and their needs by sizing the population. 
4. Developing data set linkage to help better understand people living with cancer. We aim to link the Mental Health Services Data Set (MHSDS) and Improving Access to Psychological Therapy Datasets (Talking Therapies) (IAPT) to cancer registration and hospital data sets. We plan to use it to analyse the mental health and service use of people living with cancer and how living with both conditions impacts cancer and mental health outcomes.

The partnership has produced a number of outputs linked to the work programme. The following links will take you to key articles and information pages:

1. A report exploring many people diagnosed with cancer in England in 2021 were offered Holistic Needs Assessments (HNAs) and care planning, and how this varies across different groups of people (published September 2025). 

2. Lizzie Augarde, Rachel White, Rachel Bowden, Charlotte Simpson-Greene. Variation by ethnicity in personalised care and support planning for patients diagnosed with cancer in England. Poster at Health Data Research UK Conference 2025.

3. Lizzie Augarde, Luke Morton-Holtham, Rachel White, Rachel Bowden, Charlotte Simpson-Greene. Clinical outcomes for cancer patients in England by sexual orientation and English language status: novel analysis of linked National Cancer Patient Experience Survey data. Poster at society for Societal Medicine and Population Health conference 2025

4. Augarde, L and others. Using hospital data to understand secondary care activity in the 5 years after a cancer diagnosis. Poster at Health and Care Analytics conference 2024.
5. NHS Digital and Macmillan Cancer Support. Data summarizing the number of cancer diagnosis Trust in England' November 2022.

6. White R, Stanley F, Than J and others. Treatable but not curable cancer in England: a retrospective cohort study using cancer registry data and linked data sets BMJ Open 2021;11:e040808. doi: 10.1136/bmjopen-2020-040808

7. The Macmillan-NCRAS partnership along with the other registries of the UK collaborated on initial work on cancer prevalence. This has now been incorporated into NDRS's standard publication and is available on the Cancer data hub.
8. Pethick J, Chen C, Charnock J, Bowden R, Tzala E. Inpatient admissions and outpatient appointments in the first year post cancer diagnosis: A population based study from England. Cancer Epidemiol. 2021 Oct;74:102003. doi: 10.1016/j.canep.2021.102003. Epub 2021 Aug 20. PMID: 34425383

For many other data tables and previous outputs visit the archived NCIN website. 

For more information, please contact [email protected]