At present, the majority of patient data sits in silos within various NHS services. Gaining access to information about patient care provided by a different NHS service can often be a time-consuming and cumbersome process for clinicians.
The potential benefits of sharing patient data amongst healthcare providers are huge. Creating a fully interoperable data system would support and improve the streamlined and effective delivery of health and social care services, enabling providers to allocate resources in a better way and gain an improved understanding of where the gaps in healthcare provision lie.
Linking patient data would also have the potential to provide researchers with a better understanding of the effectiveness of certain treatments.
Facing the challenge
Discovery East London, a foundation component of the One London Health and Care Record Exemplar proposal submitted to NHS England in April 2018, aims is to establish, deliver and manage a secure data service with linked combined identifiable data from all systems supporting direct health care in east London.
Discovery East London is a partnership programme involving GP practices, acute/mental health trusts and Clinical Commissioning Groups (CCGs) from across the inner north-east London boroughs of City & Hackney, Newham, Tower Hamlets & Waltham Forest. The programme also works with the Clinical Effectiveness Group at Queen Mary University London and the Endeavour Health Charitable Trust.
The Discovery East London linked dataset is designed to:
- Predict, anticipate or inform individual health needs in real time (or as near as possible) and to deliver the insight gained directly into the patient’s record across the whole of their pathway, whether in primary or secondary care or elsewhere, creating the opportunity to improve or prevent adverse outcomes.
- Expand the existing primary care informatics-driven population health programme in east London to all health and care sectors.
- Enable the real time reporting on programmes by providers and commissioners supporting clinical improvement and new payment mechanisms.
- Use data by third parties (commissioners, public health, and academics) to support research, development and planning. East London would thus become a research-enabled community.
Discovery East London is currently in its inception phase. To date:
- 95% GP practices have activated data sharing
- Live data feeds from secondary care and early processes to share mental health data are in place
- There has been strong engagement with London Sustainability and Transformation Partnerships (STPs) to demonstrate utilities/functions, including extensive links with south east London
- A close relationship with the Wellcome Trust ‘Understanding Patient Data’ programme has been established
Plans for the future
In line with the nationally-identified uses of information, Discovery East London will:
- Support patients becoming the driving ‘engine for improvement’
- Create a ‘real time’ connected dataset to improve individual care
- Provide a connected anonymised dataset for data science research in real time health environments
- Provide an integrated and whole system dataset which will support the design and implementation of new models of care, planning and commissioning.
Specific examples of outcomes we aim to deliver through this programme include:
- Improved chronic disease management and care planning for conditions such as Diabetes, Renal, Cardiac conditions and End of Life
- Develop the interface to enable direct engagement with specific patient groups and provision of alerts/tracking to all practices by 18 months of operation
- Improve record viewing arrangements for professionals and increase the number of views for selected conditions (as identified by practice, local or national priorities) within six months of operation
- Ensure seamless data/information feed to national registries (e.g. National Cancer Registry) within 12 months of operation.