Data and intelligence

Data, information and research are key to understanding health services and identifying areas for improvement. Without reliable, up-to-date data on activity, outcomes and spending, health and care services cannot be effectively monitored and held to account. Yet, until recently, very little information had been nationally collated and published on how services for people with neurological conditions are performing. After years of campaigning by The Neurological Alliance, slowly this has started to change. We have also developed our own data and intelligence through our biennial patient experience survey.

Right Care

NHS RightCare is a national NHS England programme aiming to ensure people access the right care, in the right place at the right time. It aims to tackle variation across the country in terms of the type of care patients receive. In doing so it is aiming to ensure the NHS delivers the best care to patients, making the NHS’s money go as far as possible and improving patient outcomes.

In 2016 RightCare published neurology focus packs, tailored to each Clinical Commissioning Group (CCG). The neurology focus packs provide a range of statistical information on neurology services relevant to each local CCG area. These packs support Clinical Commissioning Groups to focus on delivering the biggest improvements in health outcomes and value of services for people living with neurological conditions.

In 2019 RightCare published a toolkit on Progressive Neurological Conditions.  RightCare is also developing toolkits for epilepsy and migraine.  Neurological Alliance members have worked with RightCare to develop these pathways.

The Neurological Alliance continues to engage regularly with NHS RightCare, to provide input on RightCare’s neurology-related work. Through the Neurology Intelligence Collaborative we provide strategic engagement on RightCare’s neurology related products and priorities.

Getting it Right First Time (GIRFT)

Getting it Right First Time (GIRFT) is a national programme of NHS Improvement, aiming to reduce variation in care in hospitals. GIRFT takes a peer to peer approach, with a front line clinician in each field leading each review.

In 2017 a neurology GIRFT review was announced.  In 2019 Neurology GIRFT published its methodology, along with its regional findings.  The full report is expected in autumn 2020.

In June 2018 the Cranial Neurosurgery GIRFT report was published.

Neurology Intelligence Network

In March 2014 the first neurological dataset for England was launched. Shortly afterwards, in June, a Neurology Intelligence Network was set up, sponsored by Public Health England in partnership with NHS England. The Neurological Alliance was one of the founding members of the Neurology Intelligence Network, providing patient and public voice input, as well as our own patient experience survey data. The Neurological Alliance has therefore played a key role in shaping the Neurology Intelligence Network’s aims and overseeing its work.

The aims of the Neurology Intelligence Network are:

  • Promote efficient and effective data collection throughout the neurology journey
  • Provide a common national repository for neurology datasets
  • Produce expert analyses, to monitor patterns of neurology care
  • Enable use of neurology information to support audit and research programmes
  • Use information to drive improvements in neurology care and clinical outcomes

The Neurology Intelligence Network has produced a number of data products including its recent report on Neurological Deaths. You can read more about the work of the Neurology Intelligence Network on the relevant page of the Public Health England website. The Neurology Intelligence Network became part of the Neurology Intelligence Collaborative when it was set up in 2017.