We have created a set of guiding principles which underpin everything we do at the Great North Care Record.

Care professional access

The Great North Care Record will:

• Be easy to use, quick to access and responsive to information requests
• Support read/write of information – not just view only
• Be integrated into existing care systems where possible
• Present relevant information to the user in an understandable, concise and relevant format
• Use a template/form based design
• Support role-based access and ensure legitimate patient relationships
• Be context aware in its operation, presenting data in an intelligent and context sensitive manner
• Support mobile formats
• Allow for detailed but authorised searches and data extracts/queries to ensure information governance (IG) compliance (e.g. a cohort of similar patients to review treatment and outcomes).

Citizen and carer access

The Great North Care Record will:

• Provide a means for citizens to access their own information taking into consideration national tools that provide patient access
• Manage support for carer/family access to record, whilst providing appropriate safeguards
• Allow citizens to manage their consent matrix
• Allow citizens to manage their appointments
• Allow citizens to send and receive secure email.

Patient identification

The Great North Care Record will:

• Be reliable, secure and safe to use across all care settings
• Be NHS number-based where this is known and used (or sought, confirmed and added where not known or used)
• Enable connection to the planned national patient/citizen identity service.

Data sources and types

The Great North Care Record will:

• Contain high quality, validated clinical information from the health, social care and third party sectors that can be shared with confidence
• Support identified and agreed clinical need for information (not just provide access to what is easy to share)
• Allow full use of coded as well as free text information, graphics and diagrams
• Support access to scanned documents, images and other unstructured documents, including shared documents from multiple sources into an integrated view
• Contain citizen generated health and care data from a variety of sources
• Support tagging and other metadata for documents and images
• Contain provenance of data sources (authorship, dates etc.)
• Contain information that is structured, accurate and up to date
• Link primary, secondary, mental health and social care data for longitudinal patient/citizen pathway studies (for example).

Privacy protection

The Great North Care Record will:

• Be compliant with all relevant information governance legislation (e.g. GDPR, Section 251) and be flexible to changes in legislation
• Provide a clear, dynamic and usable mechanism for managing citizen consent for both, direct care and research purposes
• Provide a clear, dynamic and usable mechanism for managing information sharing agreements
• Provide a secure and robust mechanism for managing access to information
• Contain an audit trail to check who has accessed the system, and for what purpose. This would include pro-active alerting of access to the citizen where they have concerns
• Support ‘for your eyes only’ functionality based on data sharing agreements and consent guidelines
• Enable privacy officers and patients/citizens to be notified of any breaches in privacy, in particular where any ‘breaking the glass’ function has been used
• Enable better engagement between professionals and citizens
• Be easy to use and understand for professionals using the systems.

Active workflow

The Great North Care Record will:

• Support messaging, alerts and flags to support patient workflow across different providers of care while also preventing alert fatigue
• ‘Push’ and ‘Pull’ data (documents and elements of documents like blood pressure) where appropriate without causing information overload
• Enable workflow and other applications to be easily developed by the care organisations and not require significant third party support
• Allow for choice of design models for passive reading vs push alerts
• Present information within the local system and eventually integrate guidelines, e.g. NICE, into the clinical workflow.

Analytics and research

The Great North Care Record will:

• Support the differing needs of research, service planning and analytics users, including both hypothesis driven and non-hypothesis driven research. This should include a modular framework to facilitate extension or modification of analytics functionality as needs evolve
• Support improved interactions between researchers and clinicians to develop the translational medicine agenda across the North East and North Cumbria
• Collect data from most/all health and non-health settings, and link together data sets so it is possible to trace a patient’s journey through the care system (via NHS Number ideally), track their outcomes, and investigate ‘cause and effect’ of interventions
• Support data collection from the citizen themselves via a variety of media (e.g. phone text, app, web, wearable device), thereby allowing them to use a range of interfaces to suit their preference and access limitations, which helps bridge the digital divide in patient engagement
• Provide longitudinal real-time access to health and care data for analytics development and delivery
• Support the ability to gain new insights into the data rather than simply using the system to test new ideas or formulate new hypothesis
• Be quick to access accurate and up to date information but also be able to present historical trends in a graphical form
• Provide alternative routes to analysis enabling differing “strengths” of Information Governance control to be applied in an appropriate context-specific manner
• Provide clear and concise information on the provenance of all data sources
• Support operational analytics with rapid feedback to inform management decisions and business intelligence for future service planning.