3 Approach (page 5 of 27) in Final report (chapter 2 of 5) within Core Information Standard: Reports

3.1 Overall approach

The project was conducted according to the PRSB process and assurance criteria.

A flowchart showing the process of developing a new PRSB standard.

The approach was undertaken in two phases:

• a discovery phase (September 2018 – January 2019) to identify the information requirements for sharing and where information standards already exist to support this.
• phase 2 (January 2019 – May 2019) to develop the information standards in key areas identified during the discovery phase as requiring further work, e.g. mental health and social care. We also mobilised multi-disciplinary consultation and engagement to further refine the content of the information standard build awareness and support across all key stakeholder groups. This has resulted in a core information standard (Appendix B) for which formal endorsement will be sought from the royal colleges and professional bodies. This product will enable technical specifications to be developed and LHCR localities to move forward on their plans for aligning with the standard. It will also provide a basis for aligning system levers and incentives to encourage the adoption of the standard (for example by inclusion in the Health and Systems Support Framework (HSSF)). The scope of the core information standard is for direct / individual care. The content of the standard is expected to evolve over time as it is trialled and put into practice and new requirements are identified.

3.2 Discovery Phase

The objectives of the discovery phase were to:

• obtain agreement on the use cases for sharing information between LHCR localities (this was restricted to the first wave of agreed localities – five areas)
• jointly, with the first wave LHCR localities, define and obtain consensus on a definition of a draft core information standard; a minimum set of information needed to ensure care co-ordination and the continuity of care based on a set of use cases
• develop and agree recommendations for future phases of work to fill the gaps in the core information standard and to potentially extend the core.

The draft core information standard was developed by mapping NHS England’s definition of the core information set (Appendix A), the Greater Manchester core dataset (Appendix C¹) and the PRSB Standards for the Structure and Content of Health and Care Records (Appendix C²) (PRSB standards) against the national and international standards and records (Appendix C³-¹⁰).

The starting point for the core information standard was the existing section or sections from the PRSB standards that corresponded to the information requirements identified from the mapping. This was because the elements within each section have already been extensively consulted on as part of the PRSB standards development process and some also have corresponding technical messaging standards to enable interoperable sharing of the information. Where there was no corresponding section from the PRSB standards the identified as requiring further work.

Representatives from the LHCR localities and experts/clinical leads were consulted to validate assumptions about the information components that should be part of the core information standard leading to strong consensus on seven key topic areas for further work (a list of the consultees can be found in Appendix D).

The following areas were proposed for further work as part of the LHCR programme:

• Input from people who use services and their carers
• Social care, including both sharing with local authorities and care providers.
• Parts of the maternity and healthy child records that should form part of the core information standard
• Requirements to share encounters, alerts, test orders and future appointments
• Requirements to share mental health information
• Confirmation that requirements for end of life care is supported
• Confirmation that the requirement to link to a genetic report is supported

3.3 Phase 2

The objectives of Phase 2 were:

• To test and validate the definition of the core information standard and the principles which should guide its use.
• To strengthen the core information standard content by undertaking sufficient research, analysis and consultation with experts in the areas identified as requiring further work to enable full and meaningful multi-disciplinary and citizen consultation on the full standard.
• To consult and engage on the full standard and its use with the LHCR localities and a broad multi-disciplinary range of professional and other stakeholders, patients/public and their advocates.

o Test the first draft of the standard and the information to be included with consultees and capture any suggested changes, additions or improvements

o Capture any implications, considerations or concerns regarding how the core information standard could affect how care is provided or received from the perspective of:

▪ People (citizens, patients, carers)

▪ Health and social care professionals

o Help consultees to think about how care could be delivered and not be limited by current models of care provision

• To update PRSB information models to accommodate the standard; and to develop associated non-technical implementation guidance to support adoption.

• To develop a clinical safety report and associated hazard log.

• To gain endorsement from relevant professional bodies for the core information standard.

• To raise awareness and build understanding of what the core information standard is and how it could be used and build support for the proposed changes.

A project team was established which included professional and patient advisors (see Appendix E).

The core information standard was enhanced through research and development of those areas identified in the discovery phase as requiring further analysis. Comprehensive consultation with all stakeholders was then undertaken to develop this current release of the standard. The consultation approach is described in more detail in the following sections.