FAQs
What is the Barts
Health Data Platform?
The Barts Health Data Platform (BHDP) is a secure environment for
accessing and analysing hospital data. It supports research by providing approved users with access to relevant
datasets in private, controlled workspaces. The platform is managed by the hospital’s IT team to ensure strong
data governance and patient confidentiality. BHDP enables high-impact studies that help improve care and advance
medical knowledge.
How will I, the patient benefit from the BHDP?
The BHDP gives
approved researchers secure access to patient data to study local health challenges and explore new medical
solutions. By turning data into useful insights, we can help doctors make better decisions. Over time, this
research will lead to real benefits for individual patients and the wider community. It’s a vital step in
improving healthcare through evidence and innovation.
How will the BHDP improve my health?
Barts Health NHS Trust collects data throughout a patient’s journey, from check-in to test
results like bloods, x-rays, and scans. The BHDP helps approved researchers and clinicians explore this data to
spot patterns and trends. This can lead to earlier diagnosis, better treatments, and improved outcomes for
patients. It’s about turning everyday data into insights that make a real difference.
How will
Barts Heath enable research into patient data?
Patient data for research is stored in a secure
hospital database called the Analysis Data Core. This data stays protected within the hospital, just like all
other patient records. For each approved project, only the specific data needed is shared. Depending on consent
and permissions, this may include full, partial, anonymised, or pseudonymised records.
Who has access to my medical
data?
Only authorised staff can access your medical data. Your immediate care team uses it to
support your treatment. Some hospital staff may also access it for things like performance and legal reporting.
Anyone else must apply for access and explain why they need it, this is carefully reviewed to protect your
privacy.
How can someone outside of the hospital get access to my medical records?
The medical teams in the hospital routinely take part in research projects and may approach
you to join a study. If they do, they will discuss the data they will collect, how it will be used, how long the
data will be kept for, and how if you change your mind the data will be withdrawn from the study. Barts Health
describes the data that we may collect during your interactions with the hospital and how we handle it in the privacy notice.
Can my medical records be released without my explicit consent?
Yes, in some cases. For example, a research project might request data for all patients aged
50 to 55 treated for high blood pressure. Every request is carefully reviewed and must be approved by the
hospital’s Caldicott Guardian, who ensures it meets strict legal and ethical rules to protect your information.
If you do not want your medical data to be used for such research and planning purposes, you can opt out online.
Stricter
controls apply to data requests that include personal data (for example, name, date of birth, home address or
NHS number). These requests need to have a legal basis for the release of personal details. Further information
can be found on the NHS Digital website.
What is Precision Medicine?
Precision medicine uses all
available healthcare data, like medical records, genetics, environment, and lifestyle to understand a
person’s health risks and find the best treatment for them. The BHDP helps collect data not only from Barts
Health but also from other partners like GPs, with permission. By analysing this complete information,
doctors can make better, personalised treatment decisions for each patient.
What is a
Caldicott Guardian?
A Caldicott Guardian is a hospital official
who makes sure sensitive patient data is shared safely and properly. They follow eight key principles, including
only using confidential information when necessary, sharing the minimum needed, and keeping access limited to
those who really need it. They also ensure everyone understands their responsibilities and that patients are
informed about how their data is used. More details are available:
https://www.gov.uk/government/publications/the-caldicott-principles.
What is data science, artificial
intelligence, and machine learning and do
you use them on my medical data?
Data science uses statistics to study large sets of data
and understand trends, like how long patients wait for treatment. Artificial intelligence (AI) uses computer
programs to find patterns and predict what might happen next, such as spotting if a medication dose doesn’t
match a patient’s record. Machine learning is a type of AI that learns from data and improves over time. For
example, it can help diagnose illnesses from medical images by learning from past cases. We use these
methods carefully to improve healthcare while keeping your data safe.
What is anonymised or pseudonymised data?
Anonymised
data has all personal details like names and dates of birth removed, so the individual cannot be identified.
Pseudonymised data replaces personal details with a unique code, but the hospital keeps the link to the
patient secure. This means the hospital can still identify the patient if needed, while keeping the data
protected.
Will
you sell my health data to commercial organisations?
Any
commercial company requesting access to patient data as part of a study will have to meet the same
requirements as any other data access request to receive hospital data. Any company that does meet these
requirements will be under a contractual obligation to keep the data confidential and to only use it for the
stated purposes. They will only get the data that they need to undertake the study – this is unlikely to
include your individual contact details unless you have explicitly consented to be part of the study.
Why do you charge to access my health data?
The BHDP is not fully funded by the NHS and is currently supported by Barts
Charity. To keep the platform running after this funding ends, we charge for access to cover the costs of
preparing and sharing data. If organisations make money from analysing our patient data, we make sure the
hospital and community get a fair share.
How can I opt out of
my data being used?
If you do not want your data to
be used for anything other than your medical care and related administrative processing, then you can visit
NHS Digital website (https://www.nhs.uk/your-nhs-data-matters/) and set your data opt out
choice.
How can I find out more or stay connected?
You can visit the BHDP
and
Barts Life Science websites for the latest updates. To receive news about the Precision Medicine Program by
email, please contact bartshealth.researchdata@nhs.net to subscribe.
