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Marie Curie Cancer Care provides expert care to people with terminal illness at home and in its hospices. Marie Curie has extensive experience in service design; redesigning services to deliver an integrated end of life pathway. The charity is also a leader in end of life care research.
Marie Curie’s End of Life Care Atlas was developed with the aim of providing healthcare commissioners with a detailed insight into end of life care in their local areas. Michael Cooke, Head of Analytics at Marie Curie explained: “We wanted to use online mapping software to bring together a broad range of data on end of life care across the UK’s health landscape.”
The Atlas also complements the guidelines on commissioning end of life care set by the National Institute for Health and Clinical Excellence in 2011, which recommends that commissioners and their partners conduct a local needs assessment.
“We spent a long time pulling together a range of data from various sources,” says Michael. “Each of the four nations collects and reports data differently which in itself presents some challenges. For example, the way that deprivation in each nation is measured differs and is published via different statistical bodies.”
Once all the data was collated, a summary spreadsheet was created. “This stage was the lengthiest as the spreadsheet covered around 180 commissioning areas, each with a very large number of indicators. We then narrowed this down by selecting the most useful indicators.” Michael explains. Finding the relevant digital mapping files was fairly straightforward, and with the help of the InstantAtlas support to combine the four national maps into a single UK map, which Michael describes as very helpful, the interactive Atlas was created.
Before launching, the Atlas was tested internally and when the team were happy with the design, it was formally launched at the National End of Life Care Conference in October 2012.
According to Michael, the Atlas was well received both internally and externally, and has subsequently been used in a number of presentations given by healthcare commissioners. The Atlas has also been referenced in the Health Service Journal as a useful tool for commissioners and in the National End of Life Care Programme commissioning toolkit.
Meeting the need
The Atlas allows commissioners to compare end of life care across the UK against national benchmarks on a range of key indicators. It also supports the development of regional and national end of life care strategies by providing insight into populations and their end of life care needs. It can be used to demonstrate the extent to which people’s needs are being met and positive outcomes delivered.
Michael says: “The Atlas makes it easy to benchmark areas against local comparators. It also helps identify gaps in service provision. For example, it can show where one area stands relative to others in terms of the identification of dying patients, or whether patients living at home are receiving adequate pain relief.” He added that: “It was also useful to be able to produce a HTML5 version of the Atlas as many of our intended users have an iPad.”
Currently, there is an ongoing discussion about when the Atlas should be updated in light of the impending changes to the health geography of England. In the meantime, effort is being directed towards helping internal and external users make good use of the Atlas. “It will be a useful tool when our regional teams go out to meet commissioners, as the Atlas can show where there are gaps in end of life care provision, and this is where Marie Curie can support commissioners in identifying solutions,” says Michael.
The next step will be to incorporate data at Clinical Commissioning Group (CCG) level for England when it becomes available.
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