Written evidence submitted by the Professional Record Standards Body (DHS0028)

Introduction

The Professional Record Standards Body (PRSB) is pleased to have been asked by the Committee to provide evidence on progress in meeting the government’s commitments on digital transformation within the NHS and social care.

Standards in context. Transforming health and care so that services are fully digitised is essential to improving the quality and safety of care and its affordability. The changes required are sweeping, involving the culture, structure, governance, workforce and training of health and care professionals and people who use services as never before.  

We are a unique collaboration. PRSB was established by the Department for Health and Social Care to develop standards for care records so that information could be shared digitally where and when needed. We are an independent, UK-wide community interest company with 82 members who represent health and care professionals (royal colleges, social care organisations), people who use health and care services (patient representative groups), industry and system suppliers, the devolved administrations and regulators.

We develop consensus-based standards for care records. PRSB’s unique purpose is to bring together all the disciplines across health and care with people who use those services to define the information needed to support high quality, integrated care.  We are experts in developing care record standards that are widely supported and endorsed by UK-wide bodies.  We manage and maintain those standards and assure consistency and that standards remain current and relevant.

Our standards include the Core Information Standard for Shared Care Records, standards for integrating care including maternity care, children’s services, diabetes care as well as standards for integrating health and social care, transfers of care, medicines optimisation and personalised care.

PRSB Standards – PRSB (theprsb.org)

Our role encompasses more than simply codifying the standards.  We represent our members’ interests at every stage of the life cycle from setting priorities for standards through to ensuring they are implemented in a way that is helpful and useful to those using them rather than an additional burden on a hard-pressed workforce.

We work directly with suppliers and providers to support them on their journey to interoperable data and to assure conformance with our standards. Our Standards Partnership Scheme is supporting system suppliers and providers to implement standards effectively.

Standards Partnership Scheme – PRSB (theprsb.org)

As the voice of our members on digital transformation, our views are encouraged and sought by national bodies and  governments across the UK. While our remit is advisory, our contribution is highly valued and increasingly influential leading to solutions that improve the work for professionals and suppliers and enable delivery of the kind of integrated care that we all want. 

PRSB (theprsb.org)

Policy area 1: Commitment 2 “By increasing digital connection and providing more personalised care, we can support people to monitor and better manage their long-term health conditions...”

Case study: Standardising diabetes care information to enable digital sharing

A total of 4.8 million people in the UK live with diabetes and this is due to rise to 5.3 million by 2025. Some groups are at higher risk including people who are overweight and obese, and some people from ethnic minority groups. It is a long-term condition that is predominately self-managed therefore education of people with diabetes, agreed care plans and support play an important role in a person’s ability to self-manage their condition, and interactions with health and care professionals can be delivered across multiple care settings, primary, secondary and community. In consultations health and care professionals need access to information about the person such as their medications, information about eye screening and foot checks as well as test results. Currently not all this information is being shared digitally between the different clinical systems in use in different settings.

Digital and technological innovations are delivering tools and devices to help people better self-manage their diabetes – significant advances have been made in medical devices that can be transformative for people who use them.  In 2019 NHS England set out that all people with type 1 diabetes in England would be offered intermittently scanned continuous glucose monitors and from March 2021 all pregnant women with type 1 diabetes in England will be offered ambulatory continuous glucose monitoring. It is likely that those being offered and using medical devices for monitoring and delivery of insulin will increase over the coming years.

Is the commitment on track?

PRSB was commissioned by NHS England to develop two diabetes standards to support the digital sharing of information to accelerate help for people to manage their own health. The work addressed two key problems:

Until now, no information standard for self-management data related to diabetes existed, so different devices and apps cannot always share data with clinical systems and clinicians often have to access the data via third-party (proprietary) software meaning they may have to access multiple platforms to view the data they need to help a person manage their diabetes. Clinicians are not always able to access the proprietary software (because of local restrictions) and information cannot be brought together for comparison if, for example a person is using an insulin pump by one manufacturer and a continuous glucose monitor (CGM device) from another manufacturer. The information cannot be easily imported in a structured way into the person’s electronic health record.

Similarly, there has been no nationally agreed information standard for a diabetes record in England, making it difficult to digitally share diabetes information about a person (e.g., care plans) between professionals across different settings and within multidisciplinary teams, leading to a risk of harm. This may lead to patients having to tell their story repeatedly and duplication of clinical effort or investigations, for example blood test results may not be shared between consultants and GP leading to repeated testing. In addition, the National Diabetes Audit[1] and National Paediatric Diabetes Audits are important for quality improvement of diabetes services, however a lack of information sharing between systems contributes to labour intensive manual data collection and variable response rates across settings. Population health management, a technique to help find and support vulnerable patients to improve their health, environment, and lifestyles, relies on data collected as part of routine care to inform interventions and sharing information digitally will help to support this.

PRSB developed two information standards for:

1. A diabetes record which defines the information needed to support a person’s diabetes management. It includes information that could be recorded by health and care professionals or the person themselves that is relevant to the diabetes care of the person and should be shared between different care providers.
2. Self-Management information which defines information that could be recorded by the person (or their carer) at home (either using digital apps or medical devices) and shared with health and care professionals.

Funding:

The standards development was commissioned and funded by NHS England.

Impact on care: Once widely adopted, the standards will help enable key information about a person with diabetes to be shared between themselves, their carer and professionals to support self-management and to enable high quality care to be delivered by professionals.

The standards will help enable information collected as part of routine care to be used, once anonymised, for audit and population health management purposes.

Appropriate commitment, meets needs/outcomes, interoperability:

In general, improving adoption of standards for interoperability is critical and there are a host of issues that need to be addressed if we are to deliver standards-based interoperability.

First, PRSB was set up by the Department for Health and Social Care to develop standards through widespread consultation with end users of them. However, responsibility for widescale adoption of standards is unclear. Nationally there is a need to agree an end-to-end model that describes the process of standards development from prioritisation of need, through professional and technical specification of the standard, through support for adoption. Several attempts have been made to agree this model and the NHS Transformation Directorate is currently revising this again. It is essential this is completed and socialised with ICSs, providers, suppliers, and standards bodies.

It is also important that local implementers have a clear and unified sense of the priorities, a road map for digitisation, Covid exemplified this way of thinking and operating. Certainty from the centre with consistent messages and priorities is needed plus a sustained effort of years, not months, to deliver this change. Local implementers need to know what support they can expect and what they will need to do for themselves.

Support for adoption should include pilot testing, reference by NHS commercial teams to standards in procurement frameworks, conformance assessment of suppliers, addressing data sharing and information governance concerns, providing support for providers/ICSs including engaging clinicians, professionals and people in digital transformation programmes. (See response to Policy Area 3)

At a national level there needs to be alignment with regulators (CQC regulatory framework, NICE guidance, NHS Resolution CNST risk assessment framework) underpinned by statute that makes adoption of standards mandatory (using the Data Alliance Partnership Board Information Standards Notice process).

Investment in evaluation of adoption of standards for interoperability and the benefits it has/will realise is needed. The clinical and care community need to become aware of the benefits to those who use their services, and to themselves in their daily working lives, when the information they need is available and can be trusted and relied upon. The technical community need to be given more of a sense that the gaps they see in policy and support for their work to deliver this agenda have been heard and will be addressed.

However, there are a wide range of challenges that need to be addressed to ensure standards for interoperability are widely used and support professionals and people to manage long term conditions, and specifically diabetes. (Other long-term conditions will pose similar information sharing challenges)

• Transformational change requires clinical and professional buy-in (mindful of the intense pressures the workforce is operating under) so that information sharing between specialist services such as eye screening, hospital and primary care becomes the norm.
• Better education and on-going support are needed to empower people to self-manage.
• With the rise in use of medical devices for self-monitoring and self-management it is important to consider digital poverty and not exacerbate inequalities.
• Personal control of who has access to information people record at home either using medical devices or in apps.
• Managing risks associated with high volumes of data from devices and more generally, including liability.
• Harnessing possible benefits of access to data enabling predictive care based on using machine learning.
• The global and dynamic nature of the market for medical devices and its implications for a national health and care system.
• Integrating records such as the diabetes record with person’s other records where necessary, e.g., a woman’s maternity care record.

Policy area 1: Commitment 3 “Roll out integrated health and care records to all people...”

Case study: Implementing the PRSB Core Information Standard in Shared Care Records

The PRSB defined information that may be shared to enable high quality, safe care with appropriate information governance controls in place in the Core Information Standard to support the Shared Care Record programme.  Widespread adoption requires conformant supplier systems and PRSB launched the Standards Parntership Scheme 18 months ago to fulfil this need. It is the first time suppliers have been objectively assessed by clinicians, professionals and standards experts. (See response to Policy Area 3 below.)

The Core Information Standard has subsequently been updated to include: 

• Information modelling that will enable consistent sharing of clinical content
• Alignment with other published PRSB standards including maternity, healthy child, and the community pharmacy standard 
• Updates from the social care programme including more detail of the services being provided to a person, such as equipment and adaptions for care at home as well as vital About me content – the information a person wants to share with health and care professionals 
• The potential to extend the use of the standard for shared care records to professionals working in pharmacy, optometry, dentistry, ambulance, hospice, 111 and community services. 

ICSs and local organisations will decide the end user design and/or system views,

to help professionals access relevant information based on clinical/ care need.

These views may be based on specialties or by role type.

(As per the table below). 

 Table 1 - Example of the different view access to information within the PRSB core information standard 

Commitments to shared care records met?

In October 2021, NHSX confirmed that 37 of 42 Integrated Care Systems (ICSs) have basic shared care records in place.  Five missed the national target to establish shared care records by the end of September. A further two ICSs were on target to establish the records by the end of 2021-22 and the remaining three will receive extra support and funding to help them reach the target.

Benefits

The benefits of accelerating implementation of shared care records across England for people using services include:

• Better patient and clinician experience as it would allow for the sharing of patient information quickly, and efficiently, improving safety, person-centred care, and outcomes within and between ICS boundaries.
• Increased patient confidence in care delivery with patient's knowledge that their health and care records hold the same, consistent information and they don’t have to repeat their story each time. 
• Increased confidence in the shared care record.
• Improved clinical governance and validation of patient data.
• Improved technical validation of the tools and processes that support the data flow process.
• Increase in the quantity of information shared across Local Authorities & Social Care Settings
• More efficient and effective use of development time for system suppliers implementing an integrated care system.
• High quality data that can be used for clinical audit, service redesign, population health management, clinical decision support, AI/machine learning.

Is the commitment appropriate, meeting needs, supporting interoperability?

ICSs are working to the PRSB Core Information Standard for shared care records and progress is being made, there is still a significant journey ahead to achieve full interoperability. (See link below to Orion achieving conformance with the Core Information Standard and deploying this with its customers who are developing shared care records. This is an important first that demonstrates to other suppliers and systems that it can be done.)

However, detailed mapping has been left to each ICS and that has resulted in duplicate mapping activities by ICS's that are costly, time consuming and subject to error thereby, inhibiting interoperability between regions, limiting the potential of ShCRs, and creating further problems in the future. Also it is important that standards are adopted between ICSs, so that information sharing can support care when an individual moves between different ICS, or when a patient requires care that spans a wider geographical area (e.g. regional/national specialist centres).

In addition, PRSB was asked to consult with ICSs, suppliers and providers to consider how to accelerate the implementation of shared care records that would support sharing of care records nationwide. PRSB interviewed teams from 4 ICSs including OneLondon, and Interweave (Yorkshire and Humber) and consulted more than 100 organisations, suppliers, and individual users of shared care records to identify areas where progress could be accelerated. The following areas were identified:

• Improving data extractions: extracting data from GP records can be slow, community care data is often not available in a digital format and data from the acute sector such as medicines, isn’t structured in the same way as GP data and cannot be harmonised into a single medications list.
• Agreeing priorities: there are conflicting priorities between ICS and EPR implementations.
• Care plans: the implementation of care plans in a shared care record is complex. It has been difficult to synchronise care plans because some shared record supplier systems do not have the ability to bring all the information together chronologically.
• Buy-in: feedback from some GPs is that the shared care record is not that useful, they feel that data is already being sent to their systems, so they do not need to go into the shared care record.
• Standards for data sharing: different information is shared depending on what locality the patient belongs to or what organisation/local authority is sharing information about them.

Evidence:

Audio clip from Lee Rickles, CIO Yorks and Humber Shared Care Record <Insert audio clip>

Yorkshire and Humber Shared Care Record presentation to PRSB Standards Partnership Scheme (June 2021) on progress with implementing a shared care record across the region.

https://acrobat.adobe.com/link/review?uri=urn:aaid:scds:US:76e33fe4-9ebb-3930-a976-fde191894cd2

Ben Wilson, Director at Orion, health tech supplier, talks about adoption of the Core Information Standard in their systems to support providers implementing Shared Care Records Orion Health celebrates landmark first of achieving conformance against PRSB Core Information Standard for shared care records – PRSB (theprsb.org)

James Woolard, Chief Clinical Information Officer Oxleas NHS Foundation Trust blogs about the benefits of adopting the About Me and Personalised Care and Support Plan standard in a mental health trust.

The impact of the About Me standard on the health and care system – PRSB (theprsb.org)

Andrew Coles, CEO of Person Centred Software, blogs about the benefits of adopting the About Me standard (part of the Core Information Standard) in the care home sector. About Me brings to light the critical role we play as suppliers in improving end-to-end care – PRSB (theprsb.org) PCS customers now have 23,000 residents with About Me profiles in 640+ organisations.

Sam Goncalves, a carer for her son Shane, blogs about how important sharing information using the About Me standard is to maintaining Shane’s health and wellbeing. The impact of About Me on people – PRSB (theprsb.org)

Policy area 3: Commitment 1 : “We will streamline contracting methods…”

PRSB’s view: There has not been a coordinated approach to procurement frameworks and as a result standards are referenced and assessed differently, if at all. There is a need for a clear policy and consistent approach, which we understand is being addressed by the commercial directorate.

The PRSB conformance assessment process (described below) seeks to independently assess supplier conformance to standards that will support interoperability. We are working with NHS England to establish if and how this process and the Quality Mark that we award conformant suppliers can address this need.

Case study: PRSB standards conformance assessment for adult social care suppliers

The PRSB has been contributing across a range of NHS procurement frameworks:

• A discovery project is under way with the NHS Dynamic Purchasing System (DPS) to test PRSB standards implementation conformance with all assured adult social care suppliers on the framework
• PRSB standards are now accepted assurance criteria across all seven lots of the NHS Shared Business Services agreement procurement frameworks
• PRSB standards are also incorporated within the NHS What Good Looks Like (WGLL) framework

Is the commitment on track?

PRSB’s discovery project, commissioned by NHS England, is underway with all eight suppliers engaged and positive progress is being made. Thorough and independent conformance assessment is essential if we are to deliver interoperability effectively. The SBS is in filtering process currently.

Funding:

NA

Impact on care:

Suppliers must demonstrate implementation of standards to ensure their place on the frameworks.

Was the commitment appropriate?

Yes.

Evidence:

The Adult Social Care framework (described above) is a good model and is already showing results with eight conformant suppliers. Nourish is a social care system supplier that is conformant with PRSB’s care planning standard, which has recently been mandated by NHS England through the Information Standards Notice process. They have rolled out the care planning module, based on the standard, to 1500 care homes that are able to share information across care settings as a result.

Becoming a Partner with the PRSB – why it matters to us – PRSB

Policy area 3: Commitment 2 “We will consolidate our routes to market and strengthen our commercial levers for adopting standards…”

PRSB’s view: Like procurement, there is a lack of consistency and planning in aligning the levers and incentives for adopting standards. As the regulator, the Care Quality Commission could play a hugely important role in driving conformance here but to date this has not happened which is a great loss.

Planning for implementation should include planning on levers and incentives guided by national policy. Legislation is imminent to mandate supplier conformance with standards, which is fine but needs to be carefully implemented to keep suppliers on board and ensure the right outcomes.

In addition, soft levers should be considered such as clinical motivation to change, peer pressure and the like.

Case study: PRSB Standards Partnership Scheme

The PRSB has developed a framework for conformance assessment against its standards, which is currently available for systems suppliers to test themselves against as part of the PRSB Standards Partnership Scheme. This delivers independent and robust quality assurance and tests the basis for interoperability. The scheme is now being expanded to include a similar offering to health and social care provider organisations.

Is the commitment on track?

More than 40 suppliers have become PRSB partners. Four have so far completed assessment against their implementation of PRSB standards in their systems and nine more are embarking on the process. The solution for providers is due to officially launch in November, but the PRSB has already received a significant number of expressions of interest in the scheme.

Funding:

Enrolment onto the scheme and the conformance assessment process is primarily funded by the suppliers and providers wishing to do so.

Impact on care:

The scheme helps suppliers and providers form the foundations of interoperability across the health and social care system. In turn, this should ensure information travels with the person from setting to setting, avoiding duplication and providing professionals with the right information in the right place at the right time.

Was the commitment appropriate?

Yes.

Evidence:

Orion Health have become the first of our partners to become conformant against the core information standard – the largest and most comprehensive standard produced by the PRSB: https://theprsb.org/orion-health-celebrates-conformance-against-prsb-core-information-standard/ This achievement proves that information in people’s health and care records can be shared wherever and whenever it is needed for care. Professionals with access to shared care records will have critical information for care at their fingertips and people won’t have to repeat their story to each professional they encounter during their care and treatment. People will benefit from better joined up care as the PRSB standard allows Orion Health and its early adopter sites to share information for care when and where it is needed.

Nov 2022