The IHDP approach

What difference will this make

Benefits for the cancer sector:

  • Policy makers will be better able to monitor progress against strategy commitments and identify areas for improvement
  • Better service planning, slicker audit, informed performance management, and benchmarking, leading to continuous quality improvement
  • Direct clinician access to data in near real time to improve patient care
  • Enhanced research and innovation opportunities

Transferable learning to other healthcare areas

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

What benefits will CARDRISS provide?
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.

Following initial support and involvement of IHDP, NHS National Services Scotland is now using Data Virtualisation to link other health and social care datasets, including those relating to rare diseases. The learnings from developing the Scottish Cancer Registry and Intelligence Service have directly supported the creation of the CARDRISS. We think this is only the beginning of applying the learning from cancer to other healthcare areas.

For example, the area of heart disease could also benefit from adopting the IHDP approach to data management, access and utilisation. IHDP has led discussions between the Scottish Government cardiac policy team and clinical stakeholders on how the approach taken with SCRIS could potentially transform the cardiac data landscape.

Using the toolkit helped make the vast amount of learning from the Cancer data experience more digestible. It enabled me to take a step by step approach to applying that learning to cardiac disease and flagged a number of important things to consider before embarking on the journey.”

Kylie Barclay
Senior Policy Manager (Heart Disease, Stroke and Out of Hospital Cardiac Arrest), Scottish Government.

Impact Stories

The ways in which IHDP’s approach and activities contributed to improved outcomes and impact are shown through impact stories.

Cancer Innovation Challenge