New initiative to unleash power of myeloma patient data
14/05/2021
This article is more than two years old.
The charity Myeloma UK has announced that it is investing in a new patient data initiative to make myeloma patient data easier to collect and analyse.
The scheme will be led by University College London Hospitals (UCLH) and will include Oxford University Hospitals (OUH) NHS Foundation Trust and University Hospital Southampton. The data will be collected through the National Institute of Health Research (NIHR) Health Informatics Collaborative (HIC).
It is the first blood cancer theme within the NIHR HIC and will allow routinely collected patient data to be more easily used to drive improvements in patient care.
Once established, the NIHR HIC Myeloma data collaboration will let researchers and clinicians harness routinely collected patient data to learn how treatments impact the quality of life and life expectancy of myeloma patients. This will help identify and drive the changes that are needed to give every myeloma patient access to the best possible treatment.
Having the right data and evidence is critical for making improvements in patient care.
Patient data is collected and digitally stored as part of routine clinical care. This data has huge potential to improve patient care, but it is underutilised.
For a complex, less common cancer like myeloma, accessing this patient data is not straightforward because it involves the collection of data from multiple different hospitals. Many hospitals record information in different ways and use various computer systems. Therefore, collecting sufficient data requires time, money, and dedicated informatics and clinical experts.
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.
As part of the NIHR HIC myeloma project, the team will identify and address the technical challenges of sharing myeloma specific health information and make sure that this data is used safely, responsibly and for the benefit of patients.
By funding the first blood cancer theme within the NIHR HIC, this project has the potential to not only pave the way for myeloma focused data projects that will improve care for myeloma patients and their families, but also provide learning for any blood cancer data project.
Dr Sally Moore, Consultant Haematologist at OUH, is Clinical Lead and Chair of the NIHR HIC Myeloma Scientific Steering Committee.
She said: "I am delighted to be involved with the establishment of the myeloma data collaboration within the NIHR HIC. This investment from Myeloma UK allows us to build the processes to capture the power of routinely collected patient data in a secure, sustainable and meaningful way.
"Being a scalable approach, this has the potential to generate a national picture of the patient experience for all myeloma patients across the UK, helping us to build the evidence that will drive improvements in treatments and services."
Laura Kerby, Chief Executive at Myeloma UK said: "This initiative, the first to focus on blood cancer, is a further commitment by Myeloma UK in supporting pivotal myeloma research to advance myeloma treatment and care, and we are extremely pleased to fund the establishment of a myeloma data collaboration within the NIHR Health Informatics Collaborative (HIC).
"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."
Dr Rakesh Popat, Consultant Haematologist, University College London Hospitals, Principal Investigator 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."