Partnering with patients

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?

Traditionally medical records would have been paper-based and kept at your GP surgery. Nowadays, many health records are digital. This provides some protection against records getting lost or damaged and allows information to be passed between care providers with ease.

It is not yet commonplace for the details of your interactions with different health care services to be joined up and saved in one place.

This is changing. Linking health data from across different touchpoints 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. 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.

Unless you choose to opt out, your de-identified health data can be used by university researchers, hospital researchers, medical royal colleges and pharmaceutical companies researching new treatments.

How do we use data responsibly?

Understandably, the use of health and care data can raise questions and concerns, particularly around access and privacy. Talking about health data use is important to increase transparency and build public trust.

PIONEER collects, connects and curates health data when adults and children become unwell and seek unplanned health care across the Midlands. The data is collected from community health teams, the ambulance service and hospitals across Birmingham. In future data may be included from other parts of the UK.

PIONEER enables innovative researchers and companies to develop, test and deliver advances in clinical care with real-time information and support services.

Data security and responsible use of health data is extremely important to PIONEER. Anyone wishing to access data will need to meet strict criteria, including:

The data will be used securely and accessed via our secure research environment
The project is well designed with useful outputs expected
The people working on it are reputable.

Data access requests are reviewed by the project team and also an advisory body made up 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. Data is only shared if the Data Trust Committee are in agreement.

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.

During the coronavirus pandemic the rules have changed. At the moment, all de-identified patient information can be used and shared appropriately and lawfully for purposes related to the coronavirus response, even if you have previously opted out.

How can I get involved in PIONEER?

PIONEER uses huge amounts of health data from millions of members of the public, therefore it is vital that we talk openly about the work that we’re doing. Not only is it right to engage with the members of the public whose data is held, it is also very valuable in shaping the research in line with the public’s best interests.

Through a variety of engagement and involvement activities, we are reaching out to people all 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 seeking members of the public willing to meet regularly to share their views on data sharing and to help us determine the kind of work that is in the public’s best interest.

To apply, please download the following documents and return to the PIONEER team:

You can also join the conversation and find out more about our work through a series of online and face-to-face events.