Using health data for research
PIONEER is a Health Research Authority (HRA) and Confidential Advisory Group (CAG) supported research database and analytical environment which includes highly granular, longitudinal health record data from more than 2 million patients over a 20-year period.
Evergreen and expanding, PIONEER links data from community and hospital care providers. We operate to international data security standards, accredited with ISO 27001.
We enable data access for research which improves lives through the development of better healthcare for patients. Data access can be requested by health care staff, academic researchers, companies, policy makers, think tanks, regulators and the third sector.
All data requests are reviewed by our Data Trust Committee, a group of public citizens, who decide whether the data access request is likely to lead to public good, that the data request is reasonable and that any risks have been considered and mitigated. They are supported by non-voting experts to provide advice. 80% of the Data Trust Committee must approve a data access request for it to be supported.
Data access is provided under licence.
PIONEER operates both the NHS National Data Opt Out and a local Opt Out for patients, increasing the choices people have in the use of their health data for research. We also run a series of public facing meetings and workshops, to increase awareness of our work.
How is your health data used?
What do we mean by health data?
When you use health care services, data is collected about your symptoms, any tests you have, diagnoses made, and treatments given.
This data is saved alongside personal details such as your age, ethnicity and where you live. Collecting this information is necessary to ensure you get the most appropriate care.
How is your data stored?
Nowadays, many health records are digital, held in an electronic form. This provides some protection against records getting lost or damaged and allows information to be passed between care providers.
Even though most patients use a number of different healthcare organisations for their care (such as a GP practice and different hospitals or community services), health care records often are not joined up across care providers.
This is changing. Linking health data from across different organisations in the NHS, such as hospital data and ambulance data, can be hugely beneficial for individual care, research and for improving service delivery.
How is it used?
The NHS holds a huge amount of health data. Providing access to 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.
Unless you choose to opt out, your de-identified health data can be used by researchers to better understand and improve health care.
How do we use data responsibly?
Understandably, the use of health and care data can raise questions and concerns, particularly around access and privacy. PIONEER talks openly about health data use to increase transparency and build public trust, including in the choices people have about data access for research.
PIONEER collects and connects health data from health care organisations caring for adults and children, especially around unplanned or emergency health care. The data is collected from community health teams, the ambulance service and hospitals across the UK.
PIONEER enables innovative researchers to develop, test and deliver advances in clinical care.
Data security and responsible use of health data is extremely important to PIONEER. Anyone wishing to access data will need to meet strict criteria, called the 5 safes. These include:
- The data will be used securely and accessed via our
- The project is well designed with useful outputs expected. See examples of the projects we have supported.
- The people working on it are reputable.
Data access requests are reviewed by the project team and a group of patients and members of the public, known as the Data Trust Committee. The Data Trust Committee discuss proposals for data use and make recommendations based on what they feel is in the public’s best interest. The data request is only supported if 80% of the Data Trust Committee support the request.
Opting out of data use
You can choose to stop your patient information being used for research and planning. The option to opt out applies to anyone over the age of 13 who lives in England. If you live elsewhere in the UK, your data may be handled differently. Further information is available on the NHS website.
How can I get involved in PIONEER?
PIONEER wants to increase awareness about our work and engage with the members of the public to help shape our processes and the research we support.
Through a variety of engagement and involvement activities, we are reaching out to people across the Midlands – seeking patients’ insights, needs and experiences. In doing so, we hope to build trust and enthusiasm for the great potential that health data research and innovation offers.
Involvement opportunities
We are currently expanding our existing advisory group called the PIONEER Data Trust Committee.
We are looking for members of the public who can meet regularly (virtually or face to face) to share their views on health data access and to help us understand which types of projects should be supported with data access.
To apply, please download the following documents and return to PIONEER@uhb.nhs.uk :
- PIONEER Data Trust Committee Role Profile
- Lay member application form – PIONEER DTC
- Equal opportunities monitoring form.
You can also join the conversation and find out more about our work through a series of online and face-to-face events.
