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
- 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).
Public 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 individuals to manage their permissions
- Enable patients to manage their appointments
- Enable individuals 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
- 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/individual 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.)
- Include 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 permission for both, direct care and research purposes
- Enable 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 permission guidelines
- Enable privacy officers and patients/citizens to be notified of any breaches in privacy
- 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.