Guiding principles

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.