Real-world outcomes: cancer data partnership puts patients first

NHS Wales Haematological Malignancy Data Solution received a special mention from the Health Collaboration Awards jury for their highly innovative approach of using data to optimise treatments.

A radical new data solution is set to capture myeloma patient experience, paving the way for personalised care and ‘commissioning for outcomes’

NHS Wales is fast-becoming a leader in value-based healthcare. The latest example of its willingness to experiment with new models can be seen in a bold collaboration designed to rethink cancer care.
Bringing together clinicians, government officials, IT experts, patients and industry, Wales has developed a state-of-the-art system for capturing data on patients with myeloma, a haematological cancer. The result will offer insights into real-world patient experiences of treatment. This will allow for more tailored, patient-centred treatment plans for individual patients, as well as providing a window on broader trends in how patients respond to care.
The need for new approaches to cancers of the blood comes amid a broader push for outcomes-driven care, and at a time when new high-cost myeloma treatments have become available. Myeloma remains incurable but the latest therapies promise better survival rates and improved quality of life. The question for decision-makers managing healthcare budgets is how to ensure they are buying value.
Wanted: real-world data
The political context also matters: the Welsh government’s Prudent Healthcare approach aims to improve efficiency and effectiveness. By focusing on improving outcomes that matter to patients, it hopes to base decisions on real-world data. This could pave the way for outcomes-based commissioning, chiming with the NHS Wales goal of ‘only paying for treatments and interventions that work, in the people in whom they work’.
Essential to this are standard ways to measure outcomes and systems to collect and share this data. There are no shortcuts to building data solutions that can capture clinical and patient experience outcomes. In fact, developers are wise to tread carefully to ensure their systems are interoperable and future-proof. Translation: this takes time, money and patience.
Fortunately for Wales, they have enjoyed a degree of political stability, with the same Cabinet Secretary for Health (Vaughan Gething) in situ since 2016, having previously served as Deputy Health Minister. His term has just been renewed, helping to ensure initiatives like this one retain momentum.
When the government reached out to industry, encouraging them to think about how they could collaborate in improving patient outcomes, Janssen - the pharmaceutical company of Johnson & Johnson – answered the call. They worked with the government, the NHS and patients on a data solution that tracks patients throughout the continuum of care.
The data solution collects patient information wherever they receive treatment – hospitals, GP clinics, community settings – and stores it in an electronic health record. Health professionals will be able to access this information in real-time.
Sustainable systems
The most exciting element of the tool is that it will offer insights based on patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs). This gives care providers detailed information on how their patient is responding to treatment and what the best way forward is for that individual.
‘Eventually, the data solution will capture and collate a range of insights and outcomes on an individual patient,’ says Lee-Ann Farrell, Janssen UK. ‘From clinical data, to how they felt about the treatment they were receiving and whether they felt they were benefiting from it.’
This is the first time that a UK project has linked together such a rich dataset in pursuit of better patient outcomes. NHS Wales worked with Myeloma UK, a patient organisation, and the International Consortium on Healthcare Outcomes Measurement (ICHOM), to define a standard set of outcomes that matter to patients. The project has adopted the MyPOS PROMs tool,  by King’s College London, and funded by Myeloma UK.
Dr Jayne Galinsky, Health Services Research Manager at Myeloma UK said the patient organisation was pleased to see the MyPOS being used as part of the project. ‘We know that patients with myeloma and related conditions are living longer but with symptoms, treatment side-effects, and concerns about their families and futures,’ she said. ‘There is a critical need to understand the psychosocial impact that myeloma has on individuals so that their needs can be addressed and for such data to drive improvement in outcomes that matter to patients.’
As more patient data is collected, a repository of real-world outcomes will be amassed. The aim is for this to feed into a global network of haematological databases, likely leading to new research publications that will inform patient care.
Myeloma is just the beginning. The data capture solution will be rolled out to other blood cancers, but the model could ultimately be adopted by other disease areas. By taking a collaborative approach to building a future-ready system, the project could be a major step to a new and sustainable way of enhancing patient care.