Sharon Kell attended this one day conference organised by Cancer52 in collaboration with Public Health England (PHE) on 22nd May 2019. The aim of the conference was to highlight the importance of data for rare and less common cancers.

The conference was opened by Jane Lyons, CEO Cancer52, and Lindsey Bennister, CEO Waldenstrom’s Macroglobulinemia UK and Cancer52 Trustee. Jane highlighted the fact that although the incidence of rare and less common cancers is 47%, they were the cause of 55% of cancer deaths last year. She also mentioned the difficulty of the NHS Long Term Plan early diagnosis target of 75% for rare and less common cancers.

Jem Rashbass, Director of Disease Registration and CancerAnalysis from PHE, spoke about the lack of rare and less common cancer data to enable clinicians to fully understand the disease. He mentioned the ability to track the patient care pathway in real time would change healthcare for these patients, and the importance of cancer data collection, quality, linkage and analysis.

Karen Graham, Head of Data Improvement at the National Cancer Registration and Analysis Service (NCRAS) discussed how NCRAS works to support the collection of data for rare and less common cancers. There are seven regional NCRAS offices that collect data from NHS trusts on a monthly basis. The source of these data includes NHS Patient Administration System (PAS), pathology and haematology reports, the Cancer Outcomes and Services Dataset (COSD), radiologySystemic Anticancer Therapy (SACT) dataset, cancer waiting times, screening, patient reported outcomes and clinical trial data. These data are brought together and entered on the CancerStats database, a secure database for all cancer data within PHE. Data are monitored and validated for quality when on the database. Each trust can access their own cancer data from this portal, and request bespoke data views, e.g. the Somerset Cancer Register.

Lucy Elliss-Brookes, Head of Cancer Analysis at NCRAS, described the new staging indicator used by PHE. The amount of staging data has increased considerably since 2004 when data was first collected. Now there are 10 cancers with at least 70% of cases with staging information. To enable the Long Term Plan early diagnosis target to be met, accurate staging information is required. This can be problematic for rare and less common cancers due to lack of data, definition of early stage, timeliness of the data and unknown/unstageable cancers. NCRAS has established a working group to address these issues and develop a robust early stage indicator for all cancers. Currently, 54% of cancers are diagnosed in the early stages and the aim is to have 75% diagnosed in stages 1 and 2 by 2028.

There followed a number of real-world examples of how cancer data is collected, made available, analysed and presented for rare and less common cancers. For example, the retinoblastoma register was presented as an example of a register design specifically for the collection of retinoblastoma data for use by patients, clinicians and commissioners. The Get Data Out programme highlighted how pancreatic cancer, ovarian cancer, brain tumour and sarcoma data were being made available to patients and the public through the CancerData portal. These data were being used to identify unmet needs, influence health policy, increase awareness, improve early diagnosis, and campaign for faster treatment and better healthcare practice.

Clare Pearson, Senior Cancer Analyst CRUK-PHE spoke about the Accelerate, Coordinate, Evaluate (ACE) programme being run by Cancer Research UK in collaboration with PHE for early diagnosis of cancer. The ACE programme looks at simplified diagnostic pathways and rapid diagnostic centres, symptom-specific diagnostic pathways and multidisciplinary diagnostic centres, and overcoming barriers to screening uptake.

Real-world examples were used to demonstrate how rare and less common cancer data were being analysed and used to understand sarcoma services, increase awareness of mesothelioma, identify unmet needs for pancreatic cancerpatients, increase participation in clinical trials using the SACT database, and forecast treatment pathways and outcomes for sarcoma patients. Sophie Morris, Engagement and Awareness Manager, National Disease Registration at PHE introduced the Simulacrum tool that uses synthetic data to help understand more about rare and less common cancers.

The conferenced finished with a question and answer session. The main theme of this session was the NHS Long Term Plan and the discussion highlighted the need for good quality, reliable data that can be shared across centres of excellence in the NHS to enable clinicians to meet the Long Term Plan metrics by 2028.

View the slide presentations on the NHS National Disease Registration Service (NDRS) website here

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