Taking learning to other
healthcare areas

Programme area

Outline

The IHDP approach to cancer data is now being applied to the area of rare diseases, starting with Public Health Scotland’s building of a congenital anomalies register for Scotland, the Congenital Anomalies and Rare Diseases Registration and Information Service for Scotland (CARDRISS).

With support from IHDP, NHS National Services Scotland is now using Data Virtualisation to link other health and social care datasets, including those relating to rare diseases.

Impact

Establishing CARDRISS will bring a wide range of benefits, including:

• Informing the planning of services for individuals affected by congenital anomalies.
• Providing early warning of changes in anomaly rates, possibly suggesting increased exposure of mothers to harmful chemicals.
• Providing information on the need for and impact of interventions to prevent anomalies, for example fortifying flour with folate to reduce neural tube defects such as spina bifida.
• Evaluating the effectiveness and impact of antenatal screening programmes.
• Providing enhanced opportunities for education and research in relation to the prevention of congenital anomalies and the care of affected individuals.
• Providing a platform for future expansion of rare disease registration.

Key learning

• It’s important to consider how and where learning might be transferable, and involve counterparts in other disease areas,
• Transferring learning is clearly important, but progress in mirroring the IHDP approach to the area of rare diseases has been slow, possibly because our approach has not been adopted in its entirety, e.g. the establishment of a steering group (as with the SCRIS Executive Group) to generate and maintain momentum.
• It was not within IHDP’s gift to drive this project. Progress might well have been faster had PHS invited IHDP’s continuing involvement at the outset.