15 December 2022
How important is outcome measurement?
Heather Richardson, Director of Education, Research and End of Life Policy at St Christopher's discusses the collection and use of data by palliative care teams
Over the years, I have thought a lot about the measurement of outcomes related to the delivery of hospice and palliative care for adults. I have pondered on whether this is worth the bother, and if so, where effort should be prioritised and if and how some collective action might make a difference.
Without doubt, attending to the measurement of outcomes presents challenges. It took me a while to realise that the effectiveness of our work (ie the difference we make to people’s health and wellbeing) was an important dimension of quality beyond experience; and then to appreciate the value of additional data regarding the impact of the care we make available beyond knowing simply that people had valued and appreciated “the feel” of our services.
Once signed up to wanting to know whether we did make a difference to people’s symptom burden, to their level of functionality and ability to go about their daily life, to the issues that they found most troublesome in relation to their illness, I realised another challenge. You must have at least two sets of data per person to consider outcome – one set that describes the impact of the illness at the outset of care, then a second set of data after some care or an intervention, to see whether it made any difference. And all that in a context of work for nurses, doctors and others where there is a sense of growing paperwork demands, requests for data and less and less time to be with patients.
Even when you have the data, their value is only realised when you can analyse, interpret and consider the stories behind the data in relation to the ambitions of a team or service. Such data must be made available and meaningful to clinicians, alongside service leaders and commissioners or planners to be worth the hassle of collection. All that said, I am won over by the work of people like Dr Fliss Murtagh, Professor of Palliative Care at Hull York Medical School, and others who have led the way over the last decade or so in developing accredited tools to measure outcomes, encouraging adoption and related skills, sharing results and their implications and driving forward local and national initiatives that build on our early efforts. https://www.hyms.ac.uk/assets/docs/research/outcome-measures-in-palliative-care.pdf
At St Christopher’s we have been collecting outcome data for many years now and our use of these data in our daily practice of care, our MDT discussions, service development plans and even our discussions with commissioners grows ever stronger. Our evidence for the Care Quality Commission, quality accounts and other publications are enriched through them and efforts to confirm our unique role in our health system and to improve our services undoubtedly influenced by knowing more about which outcomes are most important to achieve, for whom and how, and the degree to which we achieve them.
If any of this – the challenges or benefits – chimes with you, then do please think about joining us on 20 January 2023 at St Christopher’s CARE for a one-day conference in partnership with Hull York Medical School – Measuring the Effectiveness of Palliative Care. It isn’t just for clinicians, or data nerds. It will also help quality leads, directors of care and others who want to consider the evidence of the difference that their services really make. And the day doesn’t only focus on specialist palliative care. We want to consider the place of outcomes measurement in new iterations of hospice care – the interface with dementia, frailty care and public health models of end of life.
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Richard Carter is 52 and has lived in Orpington all his life. In 2016 he was diagnosed with a brain tumour, and began coming to St Christopher’s in April 2017