1st July 2022 // Kat McGregor
At Myeloma UK, we are lucky enough to fund pioneering research projects to find better ways of treating myeloma and improving the lives of myeloma patients.
One of the research projects we’re funding that I think is really exciting is the Myeloma Data Collaboration project.
With the help of “big data” projects like this one, one day, clinicians will be able to deliver much more precise and personalised care. With a more complete, detailed picture of patients and populations, they’ll be able to predict how a patient will respond to a specific treatment or even identify at-risk patients before a health issue arises.
I caught up with Dr Sally Moore and Dr Louise English to learn more about the project and its progress.
The Myeloma Data Collaboration project is part of the National Institute of Health Research (NIHR) Health Informatics Collaborative (HIC), a partnership between 30 NHS Trusts aiming to improve the availability of routinely captured hospital data.
Dr Moore and Dr English explained that although every aspect of a patient’s treatment and care is collected in patient records and there is a lot of data available, it isn’t easy to combine and analyse data from different hospitals.
Each NHS Trust has its own electronic patient record system, meaning that data is captured differently at each site. For example, results from the same test could be recorded using different units such as grams per litre at one hospital and milligrams per litre at another. This makes compiling data from multiple hospitals into one dataset a challenge.
Additionally, not all data are collected in an easy-to-analyse format. Large amounts of crucial electronic information are often recorded in text and sentences rather than in structured formats like numbers or standardised terms.
To overcome these challenges, Dr Moore, Dr English, and the team are developing computer programmes to read through all the patient data and convert it to standardised formats. Creating common standards for patient record data is essential to enabling patient data research to improve people’s lives.
The researchers hope this will give clinicians across the UK access to large quantities of data from multiple hospitals. The goal is for clinicians to be able to look up the treatment and care different patients are receiving and see how this affects the remission times, quality of life or life expectancy of myeloma patients.
One of the benefits of using patient data to answer pressing clinical and research questions is that it tells us what is actually happening in clinical practice. The data can help understand the complex care delivered in the NHS and how care can be improved to provide the best services to patients.
Dr Moore discussed how one of the first stages of the project was to define the research questions as these would determine which types of data needed to be analysed. The project team is keen to find answers to important questions for patients, which would help improve patient care and answer questions that clinical trials couldn’t.
The team will be focussing on three main themes of myeloma patient care.
How do socioeconomic status and ethnicity impact entry into clinical trials and patient outcomes?
What types of tests are carried out at diagnosis and relapse? For example, how many patients undergo chromosome tests and how often they receive them.
What treatments do patients get at relapse, and when are they offered in different geographical areas?
The three themes overlap enormously, providing detailed information on how clinicians and healthcare teams interact with patients. The Myeloma Data Collaboration project takes a holistic approach to examining the patient experience, from diagnosis to treatment.
That’s why the involvement of the patient steering committee from the very beginning is vital to the future success of this project.
Dr Moore and Dr English enthused about how unusual this level of support from a charity is and how crucial the support from Myeloma UK has been in launching this project.
The funding provided has allowed this project to progress faster than the other data collaborations within the NIHR-HIC.
Dr English told me there are many other data collaborations within the NIHR-HIC for different diseases, from viral hepatitis to coronary syndromes. The rapid development of the Myeloma Data Collaboration has become a pioneering example that other research teams can follow across the sector; the project is way ahead of the curve.
They also discussed how collaborating with a representative patient organisation like Myeloma UK meant patients were involved from the start, ensuring the project focused on issues important to patients.
“The money from Myeloma UK means so much as you know it’s come from someone shaking a tin, holding a raffle, or running a marathon. It makes you drive to do your very best for the supporters – and I mean that from the very bottom of my heart.”
Dr Sally Moore, Consultant Haematologist
Dr Moore describes the project as “future-proofed”. Using the NIHR-HIC framework, the team can influence and learn from the other data collaborations, sharing and reapplying any computer programmes developed to analyse similar datasets. As the first blood cancer data collaboration, the learning from the set-up of Myeloma Data Collaboration will feed into any subsequent blood cancer data projects. This means that impact of the project will continue to grow over time.
The NIHR-HIC framework also means that the project uses existing data, and there are no costs to collecting or storing the data. If a research team wants to answer new research questions, they can build on the work carried out to date to harness the existing data pool.
The Myeloma Data Collaboration will help identify and drive the changes needed to give every myeloma patient access to the best possible treatment and care across the UK and beyond.
My key takeaway from the meeting was that the HIC team put patient experience at the heart of their work. With the help of the patient voices and this highly passionate team, the innovations over the next decade have the potential to completely transform the myeloma patient experience.