Patients & Public

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.

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.

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.

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:

1. The data will be used securely and accessed via our Trusted Research Environment.
2. The project is well designed with useful outputs expected. See examples of the projects we have supported.
3. The people working on it are reputable.
4. The data is de-identified so that privacy is protected
5. The outputs from data analysis are examined to ensure that the results can not cause any individual to be identified

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.

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.

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.