The hospices in Greater Manchester began to talk about working together in 2014, so that they could speak with a collective voice in the devolved care system. Since then the collaborative has made significant progress in influencing and improving palliative care in the area.
To really demonstrate the contribution and value of hospices to the integrated care system, the collaborative needs to make the most of its data. Without it, they cannot tell the story of hospice care, drive improvement or evidence their impact.
They want to ensure their data is:
accurate
timely
standardised
easy to collect
easy to input.
It needs to be available at a population, organisation, service and individual patient level.
Key projects
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Shared activity data
The first project the collaborative undertook was to put together a shared dataset about the activity in the adult hospices. They collated the number of patients cared for by each hospice, and the units of services that were provided.
Each hospice has its own unique model of service, so the collaborative had to create a shared set of definitions, to make sure everyone was measuring the same thing.
This data collected was not very detailed, and it was not validated. But it enabled the collaborative to clearly show how many patients they care for, and offer a sense of the impact and specialism of that care. They were able to demonstrate the ‘value for money’ that hospices provide in return for statutory funding.
The shared data definitions that were developed during this project informed Hospice UK’s national data survey about hospice activity.
System-wide data
The collaborative is now working with the Greater Manchester Integrated Care Board (ICB) to develop a population level dataset. This is being piloted in one area of Greater Manchester, and will be clinically validated. The dataset collates pre-existing data on people who have died in the area. It aims to find out how demographics and inequalities affect the services people receive, and the impact of those services.
The data will be able to answer questions such as:
Who is accessing palliative and end of life care services? What characteristics do they have?
How do health and care services interact with people during the last 12 months of their life, and what impacts do they have?
Does an earlier referral to a specialist palliative care service mean you receive more effective care?
Facilitators, challenges and advice
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Key facilitators
The Greater Manchester ICB is keen to improve data sharing and has been instrumental in driving this work forward.
The hospice collaborative is working closely with 10GM, an organisation that supports local voluntary, community and social enterprise (VCSE) organisations in Greater Manchester. 10GM partners with Data Orchard, a social enterprise that helps organisations get better with data.
From August 2023 – March 2024, 10GM ran a Data and Intelligence project that included a free data maturity assessment for all the local VCSE organisations. It made recommendations about how the VCSE sector in Greater Manchester can improve its data capabilities.
Challenges
The hospices in the collaborative all agree on the importance of data, but due to differences in size and capacity they have not always been able to make progress on the project.
The will to share data needs to be there from all parties. The hospice collaborative have developed a video to help stakeholders understand why it’s so important.
Tips and advice
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Make sure you think about data security. All data needs to be anonymised before it is shared.
Getting all your data organised can be very challenging! But once you have done it, you will find it incredibly useful.
Future development
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Intelligence hub
The Greater Manchester Integrated Care Board (ICB) is developing an “intelligence hub”. This will hopefully include a series of live data dashboards focused on and supporting palliative and hospice care in Greater Manchester (GM).
The GM Hospices Collaborative and its partners at the GM Strategic Clinical Network for Palliative and End of Life Care are working closely with the ICB’s Data, Intelligence and Insight team to build and develop these dashboards as part of their broader work plan.
Hospice capacity
Another dashboard is planned to help tell the true story of hospice capacity in real time, to help the hospices maximise the use of their services. This dashboard won’t just show how many inpatient and community beds are available. It aims to flag issues such as staffing and patient transport, which impact on hospices’ capacity to admit more patients.
Issues flagged by the new dashboard will be escalated to the GM System Control Centre to help the ICB better understand the hospices' capacity and resource limitations.
Although the initial focus is on adult hospice services, it is hoped that children’s hospice services will soon be able to offer similar data.
