Most people know Florence Nightingale as the founder of modern nursing, but she was also one of the first health professionals to dig into healthcare data and use her analysis to lobby for change. ‘Hospital statistics present an unworked mine,’ she wrote. ‘These institutions, created for the relief of human distress, positively do not know whether they relieve it or not.’
Like Florence Nightingale, Macmillan is known for its long history of nursing, and like then, we still have only an incomplete answer to the issue that Nightingale raised across the health and social care system. However, today at least, much of that missing information lies hidden in routinely recorded data. And so, driven by our projection that the number of people living with a cancer diagnosis in the UK will double from two million in 2010 to four million in 2030, Macmillan has been able to greatly expand its use of this data to target our interventions and decide where we can make the most impact.
The Routes from Diagnosis programme I manage is just one example. As others have noted on the NPC blog, some of the most important health research has emerged from studies of ‘open-ended data collection’, and we take a similar approach. Using non-identifiable cancer registry data linked to hospital episode statistics, we look at patients’ clinical journeys after their cancer diagnosis and ask ‘what happened next?’
The result is a deep understanding of variations in outcomes, the prevalence of ‘multi-morbidity’ (patients living with multiple other conditions in addition to their cancer), and the nonlinear relationship between care costs and outcomes (the best outcomes aren’t necessarily the most expensive). Through our pilots applying this research on the ground, we’re learning that large-scale data analysis coupled with clinical insight can change lives.
Here are a few of my top tips:
- Collaborate. Like NPC, we have benefited enormously from our collaboration with the public sector – in our case, Public Health England’s National Cancer Intelligence Network, as well as expert oncologists and surgeons in the NHS. We also use private sector expertise to crunch the numbers, all within a strict framework of information governance. It’s essential to have a shared vision, agree outcomes and employ theory of change techniques.
- Local engagement is just as valuable as the data itself. Even when the local picture isn’t that different from your national findings, localised data helps get people around the table. Having a committed group of local clinicians who are ready to learn from their own practice is more powerful than any bar chart. Crucially, it also brings you closer to the people who can lead change.
- Make the most of your findings. Academic publishing is important, and we’re proud of our contributions, but you shouldn’t wait until then. Use a formative approach that allows you to tweak the analysis as you go and draw out learning in the early stages. At Macmillan, we then expect to see real-world change. For example, our work on specialist palliative care at home showed that gold-standard care doesn’t have to cost the earth, and we’re now testing this more widely.
If care is to be joined up and co-ordinated across health and social services, commissioners need to be able see the big picture. By using data to increase our knowledge of patient pathways and the value of current interventions, we can redesign the system to achieve the things that matter most to people affected by cancer. That’s how making an impact can truly make a difference.