Clinical data and myeloma

Principal investigator: Dr Rakesh Popat

Institution: University College London Hospitals NHS Foundation Trust

Award amount: £185,000

Duration: 14 months

Project status: Active

Establishment of an NIHR Health Informatics Collaborative for Myeloma

We need to have a better understanding of the routine treatment and supportive care received by myeloma patients across the UK and to understand these in relation to the characteristics of their disease, other medical conditions and the patients’ life circumstances. Most of this information is recorded electronically each time a patient sees a healthcare professional or has tests for diagnosing or monitoring their myeloma. This project aims to develop a platform to safely collect, store and analyse de-identified information about the routine care of myeloma patients.

This project sits within a programme run by the National Institute for Health Research (NIHR) called the Health Informatics Collaborative (HIC). The NIHR HIC support project teams to address the technical challenges of sharing health information from the different systems used by hospitals and to make sure that there are the agreements and decision-making processes in place to do this safely, responsibly and for the benefit of patients.

The project is a collaboration between Dr Rakesh Popat, University College London Hospitals (UCLH), Dr Sally Moore, Oxford University Hospitals and Dr Matthew Jenner, University Hospital Southampton. Dr Popat is the Principle Investigator leading on the technical development at UCLH. Dr Moore chairs the Steering Committee which provides oversight and direction to the project.

How this research project will help myeloma patients

Combined together, information about the routine treatment and care of myeloma patients can be used to investigate many areas of the patient experience, for example, the effectiveness of different treatments, inequalities in access to treatments, and the impact of a later diagnosis.

Myeloma UK has funded this pilot project. Once set-up, more hospitals will have the chance to join this data collaboration project which will help to build a national picture of real-world myeloma treatment and care.

Close-up photograph of a hand holding a mobile phone.

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