Personalised Health and Care 2020: A Framework for Action

12 January 2015

Simon Phillips

Introduction

On 13 November 2014 the National Information Board (NIB), a body drawn from 19 distinct NHS and local government agencies, published a ‘Framework for action’ entitled Personalised Health and Care 2020: Using Data and Technology to Transform Outcomes for Patients and Citizens (which we refer to in this paper as the Framework for Action).

The document must really be read in conjunction with NHS England’s Five Year Forward View, published on 23 October 2014, a major contribution to the public debate in the UK about the future of the NHS.

This article examines the contents of the Framework and outlines its vision for the way that innovative use of data and technology could reform how healthcare is delivered in England. Its vision is arresting: data and technology deployed intelligently by all levels of the health and social care sector in the service of the individual needs of English citizens. A great deal of quite sophisticated activity by the NIB’s member agencies will support it.

However, the Framework is very light on how these plans will be implemented. The experience of the last decade or so of national health IT initiatives has taught us that this is the very area where the NHS is most suspect. The plans must therefore be reviewed with some skepticism.

Origins

The key to understanding the scope of the National Information Board’s work lies not in its Framework for Action but rather in another document, published three weeks earlier. NHS England’s Five Year Forward Plan grabbed headlines for its explicit identification of the funding crisis facing the NHS: without reform, by 2020/21 the NHS faces a funding shortfall of nearly £30 billion. Although (rather curiously) the Five Year Forward Plan does not on its face identify its author, we may safely assume that it might as well have been typed personally by Simon Stevens, NHS England’s Chief Executive.

Having identified the potential shortfall, the Five Year Forward View then describes a number of things that NHS England needs to do to avoid it. It identifies technology as an area where the NHS can get a lot better. It notes that the NHS is not yet exploiting its comparative advantage as a population-focussed national service, despite national health-related IT funding being roughly on a par with other industrialised nations. The problem has been in the inefficient way those funds have been spent:

Part of why progress has not been as fast as it should have been is that the NHS has oscillated between two opposite approaches to information technology adoption – neither of which now makes sense. At time we have tried highly centralised national procurements and implementations. When they have failed due to lack of local engagement and lack of sensitivity to local circumstances, we have veered to the opposite extreme of ‘letting a thousand flowers bloom.’ The result has been systems that don’t talk to each other, and a failure to harness the shared benefits that come from interoperable systems.

Notwithstanding the misquotation of Chairman Mao, this is one of the more eloquent (if damning) assessments of recent NHS IT policy. Henceforth, the NHS’s IT garden will be much more orderly:

Nationally we will focus on the key systems that provide the ‘electronic glue’ which enables different parts of the health service to work together. Other systems will be for the local NHS to decide upon and procure, provided they meet nationally specified interoperability and data standards.

The Five Year Forward View then explains that the National Information Board has been established to coordinate the work of the disparate parts of government and the NHS to ensure that all government players in the broad health sector act in a coordinated manner.

The Framework for Action

And so we come to the NIB’s Framework for Action, whose job it is to set out how it will implement the changes demanded by the Five Year Forward View. The Framework is a rather curious document. Its foreword notes that:

This is not a strategy in the conventional sense. It is not a national plan, but a framework for action that will support frontline staff, patients and citizens to take better advantage of the digital opportunity.

The bulk of the Framework’s content appears in chapters whose titles read more like exhortations to do good work than anything else: for example, there are chapters entitled ‘enable me to make the right health and care choices’ and ‘support care professionals to make the best use of data and technology.’ Each chapter sets out a mix of future-looking statements, case studies and proposals relating to each exhortation. The content is not laid out particularly clearly, so most readers will soon lose track of what’s meant to be happening when; thankfully, the Framework includes an ‘overview timeline’ at the end that summarises the actions that the NIB’s membership will take in the next few years. The key deadlines and milestones are as follows:

Date  Event 
March 2015

Circulation of proposals to enhance & extend the myNHS service on NHS Choices
Publication of a roadmap for alignment of existing national programmes with the NIB Framework

From March: All citizens to have online access to their GP records

April 2015

HSCIC to publish the roadmap & standards that care organisations will be required to meet in order to access core transaction systems

Use of NHS Number to become primary identifier in all clinical correspondence and all patient activity

NIB and partners to coordinate agreement on national technical and professional data standards to achieve digital real-time and interoperable care records

NHS England to publish new ‘Insight Strategy’ for making better use of patient outcome and experience data

June 2015

NIB to publish proposals for the regulation, accreditation and kite marking of technology and data-enabled services, including apps

Deadline for NHS England to develop proposals for ‘Code 4 Health’

HSCIC to develop proposals with industry for personal data usage reporting

September 2015

Publication of proposals for linking 111 with NHS Choices

October 2015

HSCIC, CQC, Monitor and NHS TDA to publish data quality standards for all NHS providers
HSCIC to publish data quality standards and requirements and to re-launch the Information Governance Toolkit

Digital Maturity Index key indicators for NHS Trusts to be published via NHS Choices

April 2016

NIB to agree a core ‘secondary uses’ dataset that all NHS-funded providers will have to make available

CQC to take performance against the day quality standards into consideration as part of its regulatory regime

HEE to introduce a new knowledge and skills framework for all levels of the health, care and social care workforce

April 2017

Core curriculum and associated knowledge frameworks to contain the relevant knowledge, skills and characteristics to enable the NHS workforce to embrace information and technology

End 2017

100,000 genomes to have been sequenced via the 100,000 Genomes Project

2018

Clinicians in primary care, urgent and emergency care and other key transitions of care contexts to be operating without the use of paper records

From March 2018, all individuals to be able to record their own comments and preferences on their care record

Until April 2018, procurements under GPSoC to be used to stimulate the supply of new and innovative systems for out-of-hospital services

2020

All care records to be digital, real-time and interoperable

By April 2020, the entire health system will adopt SNOMED technology

Some of these events are particularly noteworthy. Here are some of the more eye-catching proposals, grouped under each of the main Framework chapters:

  1. Enabling patients to make the right health choices. In 2015 all citizens will have online access to their GP records and will be able to view copies of that data through apps and digital platforms of their choice.
     
  2. Giving care professionals and carers access to all the data and information they need. The NIB endorses the move to a single clinical terminology – SNOMED CT – to support direct management of care. It will actively collaborate to ensure that all primary care systems adopt SNOMED CT by the end of December 2016.
  3. Making the quality of care transparent. The range and depth of data available via the ‘My NHS’ website is to be greatly expanded.
     
  4. Building and sustaining public trust. Dame Fiona Caldicott is assume the newly-created role of ‘National Data Guardian’ for health and care, with a remit to provide public and transparent scrutiny and challenge about the safe use of personal health and care information. There are plans for a national system that records the preferences of individual citizens about the use of their personal data.
     
  5. Bringing forward life-saving treatments and supporting innovation and growth. The NHS will investigate how it could best use and support genomic and pathology datasets at scale, building on the 100,000 Genomes Project. The DoH will develop an industry-wide strategy focused on removing barriers to innovation.
     
  6. Supporting care professionals in making the best use of data and technology. The Health Education Executive will by April 2016 introduce a new knowledge and skills Framework for all levels of the health, care and social care network to exploit information, data and technology.
     
  7. Assuring best value for taxpayers. The NIB agencies will better coordinate what infrastructure and services are procured ‘by the centre,’ develop Frameworks to support local buying consortia to optimise procurement decisions, and publish security and interoperability standards for common services, such as e-mail.
     
Assessing the Framework

When assessing the contents of the Framework it is helpful to distinguish between two categories of statements it includes: first, those that relate to actions that the NIB member agencies say that they will take; and secondly, the outcomes that the Framework asserts will follow from those actions. The outcomes – for example, all care records being digital and interoperable by 2020 – are ultimately the things that will help solve the £30 billion problem identified in the Five Year Forward View. But to do that (i) the actions taken by the NIB agencies must be the right ones; (ii) they must be implemented effectively; and (iii) the wider NHS market must respond in the way that the NIB anticipates or at least hopes.

Is this the right set of actions for the NIB membership to be taking? Well, perhaps. At the level of detail set out in the Framework all we can say is that the topics it addresses look relevant and that the timetable roughly accords with the demands of the Five Year Forward View. Its authors were right to decline to call the Framework a ‘strategy,’ as it fails to meet the minimum requirements for that term: a set of coordinated actions consistent with a guiding policy, designed to solve a diagnosed problem. The Framework’s final chapter – entitled ‘How can we make this all happen?’ – is also its least satisfactory. On the vital topic of implementation, upon which the Framework’s credibility depends, all it can offer is this rather lame statement: ‘Over the next few months, working through a range of task and finish groups, we will publish in a greater level of detail our plans to support delivery of this Framework.’ In other words: check back with us later.

The more profound concern, however, must relate to how the healthcare sector – in its widest sense, including clinicians, Trusts, purchasing authorities, suppliers and of course patients – will respond to the NIB’s work. As those of us in the thick of the National Programme for IT saw up close, the Department of Health ‘centre’ has surprisingly limited influence on what happens ‘on the ground,’ at the Trusts and at GP surgeries, in the product roadmap planning meetings of the NHS’s IT suppliers, let alone in the homes of British citizens – but these are all venues that must be touched by the Framework’s plans if its reforms it promotes are to occur.

The Framework is an important document. It is remarkably ambitious and will, if it succeeds, turn out to be the first step in a journey that transforms the way technology is used in English healthcare in the 21st Century. One wishes the NIB well in implementing it. But until we see the finer detail of the NIB’s plans and – just as importantly – enthusiastic and far-reaching responses from the wider healthcare marketplace, we must do so more in hope than in expectation.

Simon Phillips

Partner, Bird & Bird

26 November 2014

This article first appeared in the December 2014 edition of e-Health law & policy.