PIONEER - The Data Hub for Acute Care

About PIONEER

• PIONEER's approach

  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 fully developed 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 is strongly influenced by a body of patient and public representatives known as the Data Trust Committee. The Data Trust Committee is assisted by experts in data research, information governance and UK data law.

  PIONEER’s expert services support prospective data users in several 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.

• PIONEER's services

  PIONEER will allow, for the first time, the 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 evaluate new approaches that could significantly improve the health care of the nation and help deliver a sustainable NHS.

  With a dedicated team to support data access requests, 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 PIONEER benefits 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, to improve care through generating shared knowledge.  There is a need to clearly highlight the challenges where data remains siloed or inaccessible, and 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.