Big data, little data - and how to get your hands on it

Digitisation of services, big data and informatics
by Sue Thomas & Dr Neil ArchibaldThomasNeil Archibald

The connected person today is generating more data than ever before and in the retail world, companies are capturing and integrating as much of this data as they can in order to understand each customer better with every interaction.Advances have been enabled by the advent and integration of ‘big data’, such as information gathered about customers’ online browsing and social media activities, and information generated via smart devices in the home, which have dramatically enhanced insights from traditional sales, loyalty and retail data. Thanks to the sophisticated use of big data Tesco can, for example, send each one of its 15 million Clubcard customers in the UK 12 vouchers that have been personally tailored to their needs.pd-infographic-nhisThe success of fitness apps such as My Fitness Pal and Fitbits, shows there is already a real appetite for people to share data on their physical activity and this could, in turn, be used to help patients take more control of their health. But, when it comes to healthcare, we do not use data as wisely as we might or predict areas where we might achieve better outcomes for our patients. There is a wealth of data openly available to the NHS but it’s rarely used effectively in planning and commissioning services. A recent global study 100 for Parkinson’s is demonstrating how smart phones can be used to track health, the results of which will be used to understand what affects a person with Parkinson’s health and wellbeing.

Data sources

There is a range of data openly available to clinicians through the National Mental Health, Dementia and Neurology Network as well as through the individual Commissioning for Value packs.Commissioning for Value resources are produced by NHS RightCare to give clinical commissioning groups (CCGs) and local health economies practical support in gathering data, evidence and tools to help them improve the way care is delivered for their patients and populations. There are a comprehensive range of Commissioning for Value (CfV) data packs and other products on this web page:

Further information can be found in the resources and CfV support sections of the website.The information in these products will be of particular interest to CCG clinical and management leads with responsibility for finance, performance, improvement and health outcomes; to NHS England regional teams; to other stakeholders within each Sustainability and Transformation Plan footprint area; to commissioning support teams who are helping CCGs with this work BUT also to clinicians who need to be aware that this intelligence about their areas is being gathered.Using data can help plan services and help us understand exactly what is happening to people with Parkinson’s in individual areas.In South Tees, for example, the Parkinson's team has been using data to help make the case for ongoing service investment and development. Back in 2015, our team realised that we were failing to meet the needs of patients with complications such as motor fluctuations, dementia and psychosis. We realised that 15 minute review appointments, every six months, was no way to deal with complex issues.With the help of a Health Foundation “Innovating for Improvement" grant, we set up a rapid-access, community-based unit, staffed by a mix of medical, nursing, therapist and mental health services. Our plan was to fast-track struggling patients to our "Parkinson's Advanced Symptoms Unit" (PASU), following them up at home as required, to see if we could resolve crisis issues that might otherwise result in hospital admission.We chose a range of "quality" metrics, coupled with patient and carer feedback, to demonstrate improvements in quality of life, engagement in self-management and caregivers strain. However, we also knew that, if we did not have some "financial" metrics that mattered to local commissioners, then we could wave goodbye to our shiny new service after the initial Health Foundation funding ran out. We sat down with our local CCGs - no mean feat in itself given the pressure that they are under - to ensure that what we chose to measure would be meaningful to those with the money.We settled on the following:

  • Number of emergency admissions to acute medical care or acute psychiatric care
  • Length of stay
  • Number of admissions to nursing care
  • Prescribing costs

We sought out our departmental manager as well as a business manager within the trust. With their help, and the assistance of the hospital coding department, we were able to obtain benchmark data on hospital admissions and length of stay. Our Parkinson's nurses have been keeping a tally of nursing home patients for some time and so we had baseline data on this as well. Prescribing costs are fairly easy to calculate, particularly if you have an extremely helpful pharmacist. Armed with this baseline data, we have been able to show significant cost savings to the local CCGs and, as such, are delighted to have a fully commissioned PASU service up and running for the foreseeable future.archibald-fig-2archibald-fig-1These "little data" options are readily available to any clinician; you just need to know who to ask where to look. We also found the Commissioning for Value resource packs extremely helpful in highlighting the spend on Parkinson's disease in our region. We are now significantly more cost-effective than many other matched CCG regions, and are optimistic that the PASU will continue to deliver excellent outcomes, both for commissioners and, more importantly, patients and carers.If you would like to know a little more, then either visit the Parkinson’s Excellence Network North East & Cumbria site or watch this video.[vimeo 185748989 w=640 h=360]Sue Thomas, CEO Commissioning Excellence, and Dr Neil Archibald, Consultant Neurologist

'The things you can't get from the books'

Parkinson's Academy, our original and longest running Academy, houses 19 years of inspirational projects, resources, and evidence for improving outcomes for people with Parkinson's. Led by co-founder and educational director Dr Peter Fletcher, the Academy has a truly collegiate feel and prides itself on delivering 'the things you can't get from books' - a practical learning model which inspires all Neurology Academy courses.