Publish date: 07 May 2021

UCLH is to lead an initiative to improve care for myeloma patients alongside Oxford University Hospitals NHS Foundation Trust (OUH) and University Hospital Southampton NHS Foundation Trust (UHS).

The National Institute for Health Research Health Informatics Collaborative (HIC) Myeloma data collaboration will enable researchers and clinicians to harness routinely collected patient data to learn more about how patients are being managed and identify areas for improvement.

Project leads will be Dr Rakesh Popat, Consultant Haematologist at UCLH, Dr Sally Moore at OUH and Dr Matthew Jenner at UHS. The charity Myeloma UK will provide funding for the initiative.

The NIHR HIC is an established partnership between NHS Trusts that brings together data scientists and clinicians to help pool data from multiple NHS trusts so it can be used for research that will benefit patients, whilst providing assurance that the patient data is protected and used correctly. UCLH involvement is supported through the NIHR UCLH Biomedical Research Centre.

This myeloma data collaboration will be the first blood cancer theme within the HIC. It aims to set up a framework for the collection and analysis of myeloma patient data, which will drive improvements in patient care.

The project has the potential to not only pave the way for myeloma focused data projects – but to provide learning for any blood cancer data project.

Dr Rakesh Popat, who will be one of the Principal Investigators of the NIHR HIC Myeloma Project said: “Collaborating with the NIHR HIC provides a unique opportunity to combine clinical expertise in myeloma with the research informatics expertise of the contributing centres to understand and interrogate data collected across the patient experience.

“Although clinical trials are the gold standard for measuring and comparing the suitability of treatment approaches, they do not provide data for all patient groups or allow comparison against other treatment approaches. Being able to safely collect and compare ‘real world’ data will help us to answer the research questions that will benefit all myeloma patients in the UK.”

Laura Kerby, Chief Executive at Myeloma UK said: “Working with the experience held by the NIHR HIC, our funding ensures that there is dedicated clinical and informatics expertise to harness the power of routinely collected patient data to push for the best possible treatment and care for all myeloma patients.”

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