Health Data Insight CIC

The HDI NDRS partnership was set up in 2018 with the aim of improving cancer outcomes by harnessing data, generating evidence-based insights and finding innovative technical solutions to problems faced by the healthcare system.  As a social enterprise overseen by the Office of the Regulator of Community Interest Companies, HDI is committed to delivering for the benefit of patients and the NHS

The HDI partnership with NDRS adds value all along the data journey; from the curation and ingestion of data into the NDRS, through to analysis and generation of evidence that can be used to drive improvements in care. HDI's strategic objectives are aligned to the NHS and wider government policy to improve transparency and access to data.

The current work programme for the HDI partnership with NDRS includes:

• Endometrial Cancer Audit Pilot (ECAP): Conducted in collaboration with the British Gynaecological Cancer Society (BGCS), British Association of Gynaecological Pathologists (BGAP), Peaches Womb Cancer Trust and the Eve Appeal, this project focuses on uterine cancer to raise the profile of the disease and assess regional variation in management and outcome

• genomics:  HDI collaborates with the NDRS Genomics team to integrate genomic testing data from NHS laboratories into the NDRS. HDI supported the CanGeneCanVar programme; a five-year project to centralise cancer genetics testing data and create an interface between the NHS and research groups which underpins future expansions in genetic testing. HDI has also supported the extraction and analyses of data for the BRCA dashboard and continues to contribute to the areas of cancer research, prevention and outcomes

• real world evidence generation: our partnership analysts work with a range of organisations including charitable, academic, NHS, independent and life sciences sectors to generate data and insights that can be used to drive improvements for cancer patients, using data from the NCRAS

• synthetic data (Simulacrum): HDI created the Simulacrum. This is a data set that contains artificial patient-like cancer data to help researchers gain insights and to support requests for data analysis without researchers ever needing to see any real patient data, thereby protecting patient privacy

The partnership has generated many outputs. The following links will take you to key articles and information pages.

1. HDI and NDRS partnership publications
2. Simulacrum
3. Endometrial Cancer Audit Pilot (ECAP)
4. Ovarian Cancer Audit Feasibility Pilot (OCAFP)
5. Genomics support - current and previous
6. Post-endoscopy upper gastrointestinal cancer (PEUGIC) data collection system (mock audit portal)  
7. Post-colonoscopy colorectal cancer (PCCRC) data collection system (mock audit template)
8. Real world evidence generation (Standing Cohorts)

For more information about the HDI partnership, please contact [email protected]