PIONEER aims to improve healthcare pathways and treatments by understanding the symptoms and diseases people have when they become unwell: whether they had been to hospital or other healthcare providers before with the same problems; the time it took to make a diagnosis; and the care they received.
At PIONEER, we believe that access to highly detailed, individually linked health data, supported by expert consultancy, can transform healthcare for our population.
'Five safes' criteria. Licensed
How is the data managed?
PIONEER is carefully managed with clear governance and accountability. All processes have been approved by the Health Research Authority (HRA) and PIONEER reports all data access requests to the East Midlands-Derby Regional Ethics Committee that approves PIONEER on an annual basis. Data access will be under license and will meet the ‘Five Safes’ criteria.
Is the requested use of the data appropriate?
Can the researchers be trusted to use the data appropriately?
Is there a risk that a person could be identified from the data and how can this be minimised?
Is the data stored in a safe manner which limits the possibility for unauthorised use?
Could the results of the analysis cause any individual to be identified and how can this be minimised?
Partnering with patients
When you use healthcare services, data is collected about your symptoms, any tests you have, diagnoses made and treatments given. Sharing this information responsibly and connecting these large data sets has great potential for learning. It can help to speed up diagnosis, research new treatments, plan better NHS services and monitor the safety of drugs.
By sharing this data, PIONEER enables innovative researchers and companies to develop, test and deliver advances in clinical care with real-time information and support services, in partnership with NHS service providers and health researchers.
Working with us
Working in partnership with our data partners, we have curated and individually linked health data from millions of patients, from community to secondary care, and made this research ready in an anonymised form.
Industry plays a crucial role in the development of healthcare technologies, leading to better outcomes for patients. PIONEER is proud to work with commercial entities, from large international companies to SMEs.
PIONEER’s lead organisation. As Data Controller, UHB will host the data and ensure compliance with all the required standards to process and store sensitive health data.
We align closely with the School of Computer Science, Centre for Systems Modelling and Quantitative Biomedicine, The Alan Turing Institute and HDR UK Fellows.
WMAS is a founding partner of PIONEER, and provides community to hospital care pathway data for research and innovation.
Who's involved and what role do they play?
PIONEER is a partnership between academic and NHS organisations.
Each organisation plays a crucial role within PIONEER and the skills and expertise on offer demonstrate our inclusive approach.