2 Background (page 4 of 27) in Final report (chapter 2 of 5) within Core Information Standard: Reports

2.1 Introduction

The changes planned in health and social care over the next decade – from reducing premature births to helping people live healthier, longer and more independent lives – are all underpinned by better use of information and technology to improve care.

In order to realise these benefits, we need to agree what information should be shared and deploy systems that will talk to one another across health and social care, with the right safeguards in place.

There are currently in excess of sixty local shared care records in operation across the country. NHS England has established a programme, the Local Health and Care Records (LHCR) programme, to expand the coverage of local shared care records to cover larger populations. This will make important information available to health and care professionals and people using services across wider geographic areas, covering populations of three to five million, to improve the quality of care and care co-ordination.

The information will be brought together for individuals across the health and care settings in selected geographic areas, known as localities, to support integrated pathways of care, in the form of shared care records. The records will be accessible to people who use services, and authorised professionals and carers who need to see the record to provide care. They will not include all information about the person and will not remove the professional responsibility to verify the information with the person.

Although the primary focus of shared care records is to support direct care, a secondary objective is to be able to utilise de-personalised information in support of population health analysis and research. Collecting data covering populations of three to five million will enable signification analytic and research opportunities. Despite the shared care records covering large geographic and population sizes, movement of patients and citizens across boundaries will still take place and information will need to be shared across boundaries to support their care. Sharing information between organisations and across geographic boundaries requires that the information can be captured and shared in a standardised way and that the meaning and context of the information is maintained as it is shared. Sharing the information in a standardised way requires the development and use of information and technical standards.

NHS England set out initial expectations for the type of information that should be part of a core set of information (Appendix A datasets) and commissioned the Professional Record Standards Body (PRSB) to test this and seek consensus on what information should be shared. The PRSB is working with citizens and health and care professionals to define this in an initial ‘core information standard’.

It is imperative that the core information standard has local buy-in and based on local needs, but with national consensus. To achieve local ownership and national consensus, a rigorous consultation approach involving national multi-disciplinary engagement and local engagement through local networks was key.

This work has resulted in a national core information standard to support shared care records based on the initial agreed scope, namely that of direct, individual care. It is now expected that the technical specifications will be developed and localities will be expected to establish a plan to migrate towards the agreed standard.

2.2 The Core Information Standard

How much information should be shared?

In the future, digital advances mean that most, if not all, information related to a person's health and care can be shared with care professionals and citizens themselves. This is subject to being able to demonstrate that there is a legal, justifiable need to share for the benefit of the individual.

We are some way from this goal today so we need to start with a modest set of core information that is a realistic and achievable goal for most health and care systems over the next few years. The core information standard will include important information from a range of sources including primary, secondary and specialist care as well as social care and information contributed by individuals themselves.

In consultation with professionals and citizens on what a standardised set of core information should include, it is clear that achieving wide scale adoption over time of even a modest set of information that can be shared between information systems would deliver profound improvements in the quality, safety and efficiency of care.

The core information standard

The diagram above shows examples of information that may be sourced from different settings and the different views of the information that may be required for different professionals in different roles.

The core information standard defines a set of information that can potentially be shared between systems in different sites and settings, among professionals and people using services. Which components of core information are accessed and used will be different depending on:

• Who you are, e.g. an A&E consultant, a GP, a physiotherapist, a person accessing their own records.
• The situation, e.g. a crisis or emergency situation, being discharged from hospital to a care home, managing a long-term condition.
• The wishes of the person the information concerns regarding who should have access to their information, e.g. an individual may object to their information being shared.

How these different views of information are physically presented in systems will be dependent on system vendors and local implementers. It should ensure that the required information is presented in a way that is useful and usable and supports professionals to do their work efficiently and safely and citizens to access the information they need to manage their own care.

The core information standard will provide a framework which local health and care systems can reference and move towards over time, according to their local priorities and capability to innovate and change at a speed that makes sense for them, and recognising the maturity of local source systems and their ability to interoperate. The core information is a baseline, and it is expected to evolve and grow as we learn from its practical application and use.

2.3 Project governance

The national LHCR Programme has a specific work stream dealing with health and care professional engagement.

That work stream, overseen by the LHCR Health and Care Professional Group (HCPG) was originally chaired by the NHS England National Medical Director. At the time of writing this is transitioning to Dr Simon Eccles, the NHS Chief Clinical Information Officer. The work stream has established several projects including this one to define the core information standard. This project was commissioned by NHS England on behalf of the HCPG.

This project was led on behalf of the LHCR HCPG by the Greater Manchester LHCR clinical lead, Dr Gareth Thomas, who is also the Senior Responsible Owner of the national interoperability programme.

The core information standard had its own project board. Throughout the course of the project, John Farenden, NHS England, represented the project at the national LHCR programme board.