Paper K ‘Digital’ Deep Dive National End of Life Care Programme Board 5 th April 2017 www.england.nhs.uk
1. Background & context 2. National solutions 3. The London approach 4. Questions for the board www.england.nhs.uk
Background & context www.england.nhs.uk
Context & Background Nationally 2 commitments were made in the government’s response to the Choice Review: • 100% rollout of EPaCCS by 2020 • Patients able to edit their records and EoLC preferences by 2018 Both these commitments were made in alignment with ambitions of the National Information Board We are aware there are potential opportunities for digital solutions to support End of Life Care from stakeholder workshops and a previous ‘Code4health community’ www.england.nhs.uk
EPaCCS background What: Electronic Palliative Care Co-ordinated Systems (EPaCCS) are shared electronic records to support end of life care co-ordination Why: First piloted in 2008 as part of the DH strategy, early evaluation showed people more likely to have their preferences met and indicated financial savings . How: Different solutions in place across the country. Footprint of which services are involved, technical solution chosen and rollout plan all locally led . EPaCCS should comply with SCCI 1580 (core set of data items). National levers – Local Digital Roadmap and NHS Standard Contract. Issues: Patchy implementation across country. Issues cited include confusion over information governance , different systems not ‘ talking’ to each other , lack of reporting from local solutions, not all enable read/write , some involve double entry , digital maturity a factor www.england.nhs.uk
Outline of delivery • NHSE EoLC regional leads have a deliverable for 2017-19 to drive forward EPaCCS implementation locally • National support to share best practice – events, webinars etc • Learning from sites where EPaCCS being tested or embedded – case studies, Vanguards • NHSE digital colleagues will commission national solutions from NHS Digital (GP Connect APIs, National Record Locator, Flagging) • Commissioning guidance will be published – four sections: 1. Introduction/ case for change/ governance/ approach 2. What ‘good’ looks like from technical perspective 3. Implementation examples (London) 4. Outline future national technical developments (GP Connect APIs, National Record Locator, Flagging) • Continue to promote the Summary Care Record working with NHS Digital – read only but nationally available and links to GP Contract and frailty requirement www.england.nhs.uk
National solutions www.england.nhs.uk
Basic Needs • Flag specific patients and their conditions/preferences to inform clinicians delivering care • Collect data once • Index and publish that Information • Consume it and update it • Re-publish and share www.england.nhs.uk
Flagging • London (Coordinate My Care - CMC) and Urgent Care have asked for an “End of Life” flag – to highlight specific patients and information to call takers • Flagging patients as End of Life is technically transferrable for Diabetes, Learning Disabilities, Dementia • End users have asked for consistency in flagging, awareness of the potential dangers of “flag fatigue” and for flagging to be centrally coordinated www.england.nhs.uk
Indexing – National Record Locator • The National Record Locator is a proposed national index that could be used to provide a pointer to a patient records wherever they are located. • A need to include indexing capability for specific key end of life documents e.g. Advance Care Plans, ADRTs, Preferred Priorities of Care • This indexing capability can be applied to all clinical systems, to publish key information in standard formats for sharing and consuming www.england.nhs.uk
Information Sharing options • GP Connect • Has the potential to publish end of life information from the GP record • Care Connect • Has the potential to publish end of life information held in the Hospital or Mental Health Record • SCR • The Summary Care Record derives from SCCI1580 information in the GP record and can be shared for Direct Care • SCR offers a basic level of maturity across the NHS www.england.nhs.uk
Interoperability • Lack of interoperability can mean issues with double input for GP practices • Much end of life care information is recorded in community – it may not be recorded in GP systems • What are the key integration options required? • See next slide www.england.nhs.uk
31/03/2017 www.england.nhs.uk
Consent for sharing End of Life Care information • Coordinate My Care (CMC) and other local hubs are working to establish a consent model • The latest IG advice appears to remove the need for a consent model for direct care. Patients expect us to share their data for direct care anyway. • Patients do have concerns about the use of their data for secondary purposes www.england.nhs.uk
Reporting • What are the actual reporting requirements? • For use in Quality improvements of outcomes • Development of metrics for End of Life Care • SCR is not for reporting – Its content is derived from the GP record – which is the prime source for reporting. www.england.nhs.uk
Next Steps & Priorities • Delivery of GP Connect) • National Record Locator – PoC complete with Leeds • SCR continued roll-out • Flagging capability • Incentivise continued implementation of EPaCCS functionality • Support for place based information sharing exemplars www.england.nhs.uk
Implementation example - the London approach www.england.nhs.uk
Healthy London Partnership London Digital Programme Support for care co-ordination in London Beginning with people in the last year of life , the core objectives are: • To drive up the proportion of people with a shared EoL care plan by enabling clinicians in different care settings to create, locate and maintain a shared care plan in real time from within their native systems • To extract ‘summary data’ from these care plans and enable clinicians and carers involved in urgent care to locate and view this data in real time • To enable these capabilities using standards based information exchange between the existing EPaCCS, GP and hospital systems plus new connected apps • To provide electronic tools that allow patients and data controllers to control the sharing of this data via these applications www.england.nhs.uk
London Digital Programme Technical overview – Pan London Exchange View Citizens Data Controllers Presentation Services Trust Identity and Security Online Account Consent (IG) Applications Services Data Sharing Authentication Record Agreement Patient Locator Repositories Identity Service Citizen and Authorisation Identity Consent Orchestration Services Subscribe Integrated Care Secure Workflow and Digital Care Professional Communication Notify Services Access Connectivity Services Directory Audit Services Consumer Integration Services API ‘s IHE / Restful FHIR / MESH Care Provider Systems www.england.nhs.uk GP/ Acute/ Mental Health/ Community/ Urgent Care/ Social Care
Healthy London Partnership London Digital Programme High Level Roadmap for End of Life Care Planning www.england.nhs.uk
Healthy London Partnership London Digital Programme Approach so far • Spending time with clinicians across primary, acute and community care listening to their experiences in end of life care planning, exploring current ways of working (process, systems, documents and communications ) to identify common themes • Completing investigative work to support the creation of a technical test environment (based on the creation of a test instance of the LHCIE) to enable a basic Fast Healthcare Interoperability Resource (FHIR) standard based ‘exchange’ of structured EoL care plan data; between selected hospitals, GPs and an EoL care planning solution • Learning from the current success of Coordinate My Care (CMC) by removing dual data entry at the GP level; enabling care plans to be created natively in the GP systems www.england.nhs.uk
Healthy London Partnership London Digital Programme Key Benefits • Increasing the availability/ visibility of the end of life care plans to support decision making by frontline clinicians • Increased numbers of patients dying in their preferred place of death identified on an end of life care plan • Reduction in duplicate data entry by clinicians across London when creating end of life care plans www.england.nhs.uk
Healthy London Partnership London Digital Programme Next Steps • Continue requirements gathering with clinical experts (workflow, rules and benefits) • Develop process maps and thematic analysis of end of life care planning ways of working (current and future) • Clinical co-design group to meeting and discuss the development of the information exchange – first meeting planned for the April 27th 2017 • Development and testing of the technical test environment www.england.nhs.uk
Questions for the Board www.england.nhs.uk
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