Precision medicine

Barts Life Sciences has established a Precision Medicine Programme to better utilise one of the largest datasets within the NHS to predict health risks and find new and personalised ways to treat patients to improve their health outcomes.

The programme will establish an integrated health data platform that will provide a route to apply for access to research ready NHS patient data and a secure analysis environment for researchers to find insights from the data they have been authorised to access where they can develop risk models for personalised screening.

The Precision Medicine Platform

The Precision Medicine Platform is a health data platform which will use modern technology that complies with necessary data security and governance requirements required for patient data analysis. All projects using the data access service will follow GDPR and other legal and ethical responsibilities, protecting patient and public rights to confidentiality, fairness and equity.

By offering an integrated data access service, Barts Life Sciences will be at the forefront of supporting data-led innovation around patient data, developing its role as a key player in the life sciences economy and improving patient health and wellbeing, reducing inequalities and improving patient care globally.

Access to data

Barts Health NHS Trust has vast repositories of rich complex health data that forms modern Electronic Patient Records from the diverse community of over 2.5M people in East London.

Patient data held within Barts Health NHS Trust has incredible value to our patients, the community, and researchers both within Barts Life Sciences, and externally in the global academic and commercial sectors. However, this valuable data comes with both ethical and legal obligations on how it can be used and exploited.  

Transparency  

Barts Health are committed to being transparent to the patient and public regarding how their data is being stored, processed, managed, used and shared. 

To meet the legal and ethical requirements, in addition to capturing the views of the local community, Barts Health as the data controllers have implemented a Data Access Committee (DAC).  To continue building public trust there will be two public contributors on the DAC to ensure approved projects are aligned as to how patients and public would expect their data to be used.

We will publicly record all the approved data requests approved by the DAC giving patients and public access to a record of how, who and why the community’s data is being used. In addition to basic information about the request, links to any publication and conclusions will be added as they become available, further demonstrating the benefit and impact of the research and use of data. 

Data Access Committee 

The DAC is composed of members who have the expertise and skills in clinical research, data protection and management and research governance. The DAC membership can be found here.

Members will follow the DAC’s Terms of Reference and processes endorsed by the Precision Medicine Programme Board which adopt the Five Safes framework, and the broader principles of the Data Saves Lives policy paper. These principles enable data owners to provide safe and secure access to patient data to authorised and qualified individuals for purposes with a clear legal and ethical basis that is beneficial to the public and our local community. 

Request for Access to Data 

Information on our standard research data sets can be found on HDR-UK and bespoke data sets can be provided upon request. To request access to data please get in touch with us at bartshealth.researchdatarequest@nhs.net.  

The DAC aims to complete internal data approvals and establish project within 2 months provided all external and required approvals i.e., Research Ethics Committee/Health Research Authority, Confidential Advisory Group and Joint Research Management Office (JRMO) sponsorship are in place. Please read the JRMO Standard Operating Procedures for further guidance. 

Publication 

Publications arising from data accessed from Barts Health must acknowledge Barts Health NHS Trust as the data providers and the Precision Medicine Platform funded by Barts Charity (G-002196).  

Patient and Public Engagement  

Patient and public involvement and engagement (PPIE) is incredibly important to us. We want to build a system that is transparent and trustworthy, with your help.

There are many ways to get involved. Opportunities include having a say in how patient data is being used, taking part in events, and raising awareness for the precision medicine programme.

For more information read our PPIE strategy and FAQs or let us know if you would like to get involved by emailing bartshealth.researchdata@nhs.net.