Harnessing the power of data for CPC

As part of our wider conversation to inform the development of our new strategy, we will be publishing a series of blogs reflecting on what great children’s palliative care should look like in 2028, what needs to happen to get there and what Together for Short Lives’ role could be in achieving that. 

Today we hear from Katie Boswell, Deputy Head of Charities, NPC

At the recent parliamentary launch of Together for Short Lives’ #forthe49000 campaign, I was reminded of one of our favourite sayings at NPC with regards to charities communicating their impact: ‘No numbers without stories, no stories without numbers’

Data includes both numbers and stories, and is most powerful when the two are drawn out together. Numbers, like ‘49,000 children with life-limiting conditions’—known as quantitative data—can provide a clear message about what is happening for large groups of people, and highlight links between services and outcomes. Stories, like the one we heard from parent Rachel, who gave a speech about caring for her son Frank after he was diagnosed with a rare disease at the age of four—known as qualitative data—can capture the complexity of social change and provide in-depth understanding of how people experience services.

As Together for Short Lives looks to the future, collecting both numbers and stories about how services are supporting children and loved ones will be crucial to improving children’s palliative care. So, what does it take to harness the power of this data?

Collecting the data that matters to improving children’s palliative care

When charities ask me what data they ought to collect, my first question is always: What are you trying to achieve? Most of the time, charities collect data either to understand their impact or to understand the context in which they work.

NPC’s four pillar approach guides charities through deciding what data to collect in order to understand their impact. We recommend that charities start by mapping their theory of change—what they plan to achieve and their path to getting there—then prioritise what to measure and select appropriate data sources and tools. Sometimes this means collecting less impact data—but focusing on the data that matters.

The same message applies when looking at data to understand a charity’s context: prioritise data that matters. For children’s palliative care, this could include data about the characteristics and needs of children with life-limiting conditions and their families, what is important to them, and how well services are currently supporting them.

Aligning data systems to see the bigger picture about what works

Unfortunately, current data does not provide a clear picture about the things that matter to children and their families. Earlier this year, a report from the Council for Disabled Children and True Colours Trust found that national data about disabled children was riddled with gaps and anomalies. Data is collected on children separately by different agencies using different systems, making it difficult to understand children’s needs and commission effective services.

This is a barrier to improvement. But the problem is not unique to children’s palliative care. Other sectors also find that data is fragmented and inconsistent—and charities struggle to access government data. NPC recently called for the government to establish a Health Data Lab that would unlock analysis of administrative health data for groups of people receiving services from charities. This model could be applied to children and families receiving support around palliative care.

Moving from data to insight

Data alone is not enough: it needs to be translated into actionable insights. So how can charities move from data to wisdom?

  1. Collate data in a structured and systematic way. This could range from a well-organised internal CRM system through to an ambitious database like CHAIN, which brings together information from a range of organisations working with rough sleepers in London.
  2. Analyse and make sense of the data collected. A survey of 200 charities carried out by the Data Evolution project found that fewer than half of respondents thought they had the right skills to analyse data in useful and meaningful ways. NPC has argued the charity sector needs to attract and develop more analytical skills to help close this gap.
  3. Use data to inform strategic decisions or improve services. This requires a culture focused on learning and the leadership to act on what the data is saying—however difficult or disruptive that may be.

Together for Short Lives is asking important questions about the future of children’s palliative care for its strategic review. Data can provide rich insights into these questions but harnessing it requires the right systems, skills, culture and leadership. The ultimate prize—better services for people like Rachel and Frank—is one that is worth fighting for.

Katie Boswell is Deputy Head of Charities at NPC

What do you think? 

Tell us what you think of this vision for Children’s Palliative Care by posting a comment below. You can share more detailed comments by completing this short survey. You can also submit your own blog to support this series by emailing emma.dixon@togetherforshortlives.org.uk

We are keen to hear from as many people as possible, so do share this blog with your stakeholders and networks. You can also engage with the conversation on Twitter, using the hashtag #forthe49000


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