Manchester has the highest proportion of premature deaths caused by cancer in the UK, and one of the UK’s worst cancer survival rates. That’s why Macmillan, working with partners across the local health and care system, is undertaking work in Manchester to help understand more about cancer pathways, with the aim of improving the lives of everyone affected by cancer in Manchester.
Data has been key to developing this model of understanding, based on a new technique called Routes from Diagnosis. Highly commended by the Health Service Journal in their annual awards in November, this research links and analyses routinely collected data to map the cancer journey from diagnosis to death or continued survival, describing the health outcomes that patients experience. It’s a fantastic demonstration of how important the use of data can be to helping the NHS to understand both individual patient needs and the needs of the wider population.
In Manchester, the Macmillan and Monitor Deloitte teams are aiming to link cancer registry data to local acute, primary and palliative care data to map local breast and lung cancer patients’ journeys. Unfortunately, despite a huge and on-going effort on the part of over 50 people across the local health system, the story of how the data were collected and provided has not only been challenging; it is not yet finished.
The valuable analysis required to inform Macmillan’s work has been delayed and has had to be staged in delivery, because of problems gaining timely access to linked data. It is clear that while there is a huge sense of willingness from all involved, the processes that govern access to information remain opaque at every stage, with too much uncertainty about what is and is not permitted.
At the root of these problems is the project’s need to link datasets from different sources. This ought to be straightforward; in order to get a full view of patients’ clinical experiences and the costs of cancer care across whole system, data that link parts of the patient journey are essential. But unfortunately this is not routinely done at a local level, and brings challenges in agreeing governance as well as manual technical resource complexity.
Over time, as governance assurance became clearer, this brought additional bureaucratic and technical complexity, such as re-signing Data Sharing Agreements, re-training resources on data extraction, pseudonymisation and data transmission processes.
Together, these have caused significant delays. And while this project focused on Manchester, many of these challenges are experienced nationally, meaning vital research is being unnecessarily impeded across the whole NHS.
New initiatives like the Greater Manchester Academic Health Science Network’s (AHSN) Datawell project are seeking to reduce this complexity, making access to data easier and its availability more transparent while maintaining patient confidentiality, as well as clarifying how data can and should be used.
Some basic objectives for Datawell include:
- Providing a single information governance framework that enables the use of data to support better care
- Supporting members in how they use data and share them with their partner organisations through better automation within a safe, trusted environment
- Build a federated resource capacity of NHS staff with the skills and support to enable easier sharing of knowledge and best practice
Macmillan’s work has already provided detailed insight into how cancer care can be improved in Manchester, supported by dedicated staff within the NHS across Manchester. With better, faster access to essential data, the AHSN and Macmillan hope that even more could be achieved to support our citizens and patients, providing a positive example for the future of data-driven research and service improvement in the NHS.
Gary Leeming (Associate Director of Informatics, Greater Manchester Academic Health Science Network) & Julie Flynn (Senior Programme Manager, Macmillan Cancer Support)