Acute care is any unplanned contact that a person has with the healthcare system when they are suddenly unwell. This can be with a GP, but is increasingly provided by out of hours GP services, pharmacies, hospitals or by calling 112 or 999. Recent reports from medical bodies, policy think-tanks and the press have highlighted the pressures on acute services. Last year, Emergency Departments in NHS hospitals provided 110 million acute care patient contacts at a cost of £17 billion and the numbers are set to rise again this year. This is a system under critical pressure, staffed by hard working and passionate NHS healthcare professionals who are struggling meet the acute health needs of our population.
Despite this pressure, the way we deliver care when people are suddenly unwell has not changed for decades. Depending on local services, patients can ask for medical care through a number of different community and secondary health care providers, and may contact a number of healthcare providers on one healthcare journey (from a pharmacist, GP, ambulance team and hospital, for example) but our ability to piece this journey together and learn how it could be improved is limited. This is because different health care providers do not share detailed information about patients, and this means we don’t have a complete picture of how acute care is provided across the UK. Without understanding the journeys patients go on when they are suddenly unwell, we cannot improve acute healthcare, to provide better outcomes and more patient choice. PIONEER aims to change this.
PIONEER is the Health Data Research Hub for acute care. It will link, for the first time, acute healthcare data from primary care (GPs, pharmacies and out of hours GP services), secondary care (NHS hospitals) and the ambulance service across the West Midlands, so that we can follow an individual’s acute care journey across community and hospital healthcare providers. This will allow us to understand how, where and why people seek unplanned medical help, and what happened to them along the way. Understanding this journey offers the opportunity to identify critical points where health care could have been provided or health needs responded to in a different way, potentially supporting earlier diagnosis, new treatments and monitoring systems and changing how services are run.
This is an exciting but challenging ambition. There is the technical process of joining ever more complex health data from different providers, often stored in different formats. But this is not the most important challenge for PIONEER, and indeed all of HDR UK’s health data hubs.
It is vital that patients understand, trust and support their health data being used to improve healthcare choices and services. Patient voices need to strongly direct how health data is linked and accessed, and data provision needs to be supported by a clear framework, meeting Information Commissioner’s Office principles of lawfulness, fairness and transparency in how data is stored and used.
Since starting in October 2019, our initial steps have included getting the right people in place to deliver PIONEER, working with health care providers to identify the data needed to link acute care journeys, and ensuring those who can use the data to improve health care, through research and innovation, know when it will be ready, and how they can access it. However, the most important activity has been the conversations we are starting with patients and the public about health data and its use. PIONEER will include health data from adults and children. Some of these will have extensive experience of NHS healthcare as part of their chronic disease management but some will be new to NHS services and the concept of health data. To reach as many people as we can, we are trying new ways of engaging, including through public stands, leaflets, quizzes and games. We hope to build on HDR UK’s national dialogue about health data, and the opportunity we have to improve the health of our nation.
Meet the Hubs: BREATHE – The Health Data Research Hub for Respiratory Health
1 October 2019
Guest Blog: Professor Aziz Sheikh, BREATHE Hub Director and Dr Jenni Quint, BREATHE Hub Deputy Director and Clinical Lead
Meet the Hubs: Discover-NOW – The Health Data Research Hub for Real World Evidence
5 November 2019
Guest Blog: Dr Axel Heitmueller, Discover-NOW Hub Director talks about the importance of understanding people's views and expectations about the use of health information to build trust.