By learning from a broad view of other sectors, hospices can begin to understand the opportunities that using data and outcome measures effectively can produce.
This was the key message from the recent session I attended at the Hospice UK conference.
In line with the theme of ‘demonstrating the value of hospice care’, delegates congregated to hear the experiences of those in other sectors who have used data and outcome measures to make a difference and develop their services.
Chairing the session, Michael Kerin opened by acknowledging the barriers to collecting palliative care data. Reflecting on the ‘dispersive’ world of hospice care, he recalled arguments that palliative care is too unique to collect data, that it’s difficult to measure compassion and that data systems distract from care provision.
However, in a world where information systems and digital support is ‘vital’, these arguments were dismissed as increasingly irrelevant.
Hospices need to look outwards
There is a need for hospices to look outwards to other sectors and learn how data and outcome measures have been effectively used.
Malcolm Roxburgh reflected on his experience working with data sets from both diabetes and drugs and alcohol over the past two decades. Discussing his key learnings from setting up a national diabetes data set, he noted the importance of working to establish a data set that was set up by clinicians for clinicians.
Clinicians will be supportive of the work if it helps them to manage their case load, and clinical support is vital to success.
The ability of a data set to allow benchmarking was also noted, although Malcolm reflected that benchmarking might not necessarily show you as much about quality as it does about case mix. None-the-less, that data can be valuable in enabling you to garner public health insights about a particular condition.
Malcolm acknowledged that there are many factors which breed success for a data set, including a strong political drive for the data – as there was with the drugs and alcohol data-set initiated in the late 1990’s.
A valuable data set also breeds success; Malcolm explained that the data set established for drugs and alcohol is still in use, and is used for national statistics and performance management by a range of organisations such as CCGs, government departments and CQC. He highlighted that commissioners are especially avid consumers of data and can be very creative with it.
Proving outcomes will help sustain funding
John Barton shared his experiences and the lessons learnt from responding to external demands in his work of managing information systems across Turning Point. An outcomes project was established so that the organisation could prove what it provided and delivered on.
He explained how vital outcomes are – the project was all about proving what the organisation did in as many ways as possible; something that resonated with many hospices in attendance. He described how being able to prove outcomes will help sustain funding.
John highlighted that one of his key learnings from this project was learning how to manage change across an organisation. He described the challenges he faced by staff across the organisation who were reluctant to embrace entering data; people felt that they ‘don’t come to work to use a computer, they come to help people.’
However, understanding the concerns of staff and helping them to see the value in the data was key. In his own words, “to be able to show the workers the change and the difference that they make is powerful.”
As a call for hospices to step-up and provide better data, he explained the need to have systems in place that enable organisations to analyse and adapt services and use data to drive improvement. Involving other organisations and patients in developing outcome measures is important.
Don’t do it ‘to’ them
With plenty of food for thought from both speakers, John provided some take away messages for the hospice sector to consider.
Firstly, working together as a sector will yield more success, and secondly, allow people ownership of these systems – don’t do it ‘to’ them. And, adding some final insights about the future, he encouraged hospices to think about the ‘app-ification’ of healthcare which will allow people to record and measure their own data in new and innovative ways.