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What does the Hub do?
PIONEER is the Health Data Research Hub for Acute Care, led by the University of Birmingham and University Hospitals Birmingham NHS Foundation Trust, in partnership with West Midlands Ambulance Service, the University of Warwick, and Insignia Medical Systems. Acute care is the provision of unplanned medical care; from out of hours primary care, ambulance assessment, emergency medicine, surgery and intensive care. Demand for acute health services are currently unsustainable for our national healthcare resource. Despite this, there has been less innovation in acute care than in many others health sectors, in part due to siloed information about patients with acute illnesses.
The PIONEER Hub collects and curates acute care data from across the health economy, including primary, secondary, social care, and ambulance data. PIONEER uses this data to:
- provide accurate, real-time data for capacity planning and service innovation
- support learning healthcare systems including better use of current/novel investigations, treatments and pathways
- map innovation need
Ultimately, PIONEER enables stakeholders to develop, test, and deliver new ways of caring for acutely unwell people, supported with expert patient, health care professional, and compute/analytic services.
How does the Hub operate?
PIONEER has a large database of linked, anonymised, routinely collected acute care data that will be accessible and discoverable to innovate and improve acute healthcare. This includes health processes, monitoring, diagnostics, and treatments, including empowering patients to manage their own conditions more effectively.
Acute care data from PIONEER partners is being curated and formatted from different sources so that it is research ready and can be linked with other datasets both nationally and internationally.
A data access request process has been tested and supports interested stakeholders to outline their intended uses of the data for research and innovation to improve patient care. Decisions about how and where to share data will be strongly influenced by a body of patient and public representatives known as the Data Trust Committee. The Data Trust Committee will be assisted by experts in data research, information governance and UK data law.
PIONEER expert services will support prospective data users in a number of ways, for example by offering workshops with relevant patient groups, advice from healthcare practitioners, the curation of a bespoke dataset, algorithm generation, or an analytic plan.
Who are the Hub’s services for?
PIONEER will allow, for the first time, mapping of how, where, when and why patients access acute care, with significant data granularity to identify areas for innovation. This includes structured text and imaging, with the capacity for our staff to mine unstructured text and provide this in a structured form. We can provide both test and separate validation data sets; develop, test and modify algorithms; provide access to synthetic data; assist with regulatory processes, and provide unrivalled access to service users, healthcare professionals and purchasers to facilitate the innovation pipeline.
There are opportunities for health researchers and innovators from within the NHS, academia, SMEs and industry partners to use these data and services to understand acute care processes and then model and test new approaches that could significantly improve the health care of the nation and help deliver a sustainable NHS.
We welcome enquiries from large industry and SMEs and are developing an SME “playbook” to provide new models of support for this vital sector of the economy. With two dedicated teams to support data access requests (Commercial and NHS/academic partnership), we aim to provide timely responses to enquiries, building up a detailed data request together, to ensure data use processes meet the needs of our partners.
How does the Hub benefit patients and the public?
PIONEER works with patients, the public and other stakeholders to ensure that the design, development and governance of data access through PIONEER are in the public interest, are publicly transparent and that these principles are communicated effectively on behalf of not only PIONEER, but to improve understanding of the value of health data research in general.
The PIONEER team are embedded within frontline health services and this has enabled conversations with patients, the public, and NHS staff about the need for shared data access, in order to improve care through generating shared knowledge. There is a need to clearly highlight the challenges where data remains siloed or inaccessible, and also to strongly encourage patients to champion processes to enable responsible data sharing.
We have set up a Data Trust Committee who review data access requests and advise on appropriate data sharing that they, as members of the public with lived experience of acute care services, feel has the potential to benefit public good.