Dr Ceri Bygrave, Clinical Lead for Myeloma at the University Hospital of Wales, takes us through the creation of the Welsh National Myeloma Dashboard and explains why harnessing real-world data is key to improving patient treatment and care.
What is the Welsh National Myeloma Dashboard?
The Welsh National Myeloma Dashboard is a place to store, present and analyse all data relating to myeloma in Wales. The Dashboard was set up following two pieces of work. Firstly, HaemBase Cymru – a joint working partnership between Janssen, the Welsh Government and the NHS Wales Health Collaborative. The project funded systems to improve electronic data capture relating to haematological malignancies in Wales, and enabled digitalisation of patient records to track care from initial diagnosis to end of life. This included patient reported outcome measures (PROMs) as well as data from clinics and multidisciplinary team meetings. This electronic data is available in real time and can be analysed to assess survival rates, response to treatment and quality of life.
Due to the work that had already taken place with HaemBase Cymru to improve data credentials in myeloma, the team at Welsh Value in Health Centre, including Dr Sally Lewis, had offered an opportunity to create the Welsh National Myeloma Dashboard. The Welsh Value in Health Centre is a Welsh Government-funded programme which aims to achieve world-leading outcomes for Welsh patients. This second piece of work drew together a multitude of data resources which the Dashboard can collate, analyse and represent in tables, graphs and summary statistics about age, gender, location and comorbidities etc. These figures can then either be viewed nationally or individually for each of the seven Welsh Health Boards.
The majority of the work on the Dashboard happened during the pandemic, enabling Welsh hospitals to assess the impact of COVID-19 on patient care (for example, through reviewing the number of new hospital admissions).
What information is stored on the Dashboard?
Some parts of the Dashboard, such as myeloma incidence and demographics of myeloma patients, are available to clinicians across all of Wales. Whilst the Dashboard was initially largely based on demographics by Health Board, a key development last year was adding Cardiff and Vale University Health Board chemotherapy data from electronic prescribing.
The Dashboard combines multiple data sources:
- CaNISC (Cancer Network Information System Cymru) – a patient-based national cancer information system which collects data on patient care, diagnosis and treatment.
- Admitted Patient Care – a dataset that contains information on consultant-led admitted patient care, regardless of the location of patients’ residence.
- Emergency Department – a dataset that includes information on attendances at Accident and Emergency departments and Minor Injury Units in hospitals in Wales.
- Office for National Statistics Population Data – a dataset that contains annual mid-year population estimates.
- Office for National Statistics Population Mortality Data – a dataset that contains monthly death registrations.
- Outpatient Attendances – a dataset that contains information regarding consultant or nurse-led outpatient clinic activity.
- Outpatient Continuance Sheets – a dataset from Dr Ceri Bygrave’s Myeloma Clinic in Cardiff, which contains data on patient comorbidities, prescriptions, and various measures collected in clinic (e.g. performance scores).
- Chemo Care Data – a dataset from Dr Ceri Bygrave’s Myeloma Clinic in Cardiff, which contains data on patient chemotherapy treatments.
- WRRS (Welsh Results Reports Service) – a dataset that contains results of clinical tests.
- WDS (Welsh Demographics Service) – data of all patients registered with a GP Service in Wales.
What were the main reasons for setting up the Dashboard?
The Dashboard was started out of frustration at data poverty, and the lack of electronic data for myeloma patients. While this would be problematic for most patient cohorts, myeloma patients have lots of treatment options, many of which have high toxicity. Clinicians need to make sure, with so many frail and elderly myeloma patients, that the treatments chosen are beneficial. The only way to ensure this is by having systems in place to track quality of life and functionality alongside treatment. The Dashboard shows the importance of real-world data on how patients are being treated and cared for in Wales. The alternative is to use clinical trial data which often does not reflect the reality of rural Wales. Real-world data for patients is crucial and any resource which can improve uptake and quality of such data is crucial.
How has the Dashboard changed or evolved since initial set-up?
The Dashboard is not yet equipped to answer all the questions clinicians and patients want to ask. Capturing data in real time will help. The next iteration of the Dashboard will be inputting electronic PROMs (ePROMs), which are already being captured at the University Hospital of Wales every three months. Whilst ePROMs are already useful when looked at in isolation, feeding them into the Dashboard will allow assessment of quality of life in relation to treatment, age, gender, location and socioeconomic status etc. Clinicians can then hold informed conversations with patients about starting different treatments. Blending ePROMs into the Dashboard is ongoing work, but it is key to the project to have data available on how. The Dashboard now provides data to HONEUR (Haematological Outcomes Network in Europe), contributing to a larger real-world dataset beyond Wales.
What are the current barriers associated with the Dashboard?
The main barriers are always time and human resources. There can never be too many data managers, or too many people helping with data analytics. The Welsh Value in Health Centre team is small and needs great investment – and they are looking at more than myeloma. Better data should inform how money is spent but this isn’t necessarily recognised. Investment in health data resources is needed.
What advice would you give to other Health Boards/Trusts wanting to implement a similar system?
It is never too early to start trying to uplift existing data sources. A lot of manual data extraction is needed so need to find ways to capture structured data on myeloma treatment and care.
Q&A with Dr Ceri Bygrave
Clinical Lead for Myeloma
University Hospital of Wales