Personalised health & care 2020 – required reading! (UK)

The NHS’s National Information Board (NIB) this week published its long awaited document on its plans for personalising health and social care activities, with a strong England focus. It breaks new ground for such a document in many ways (not least that when you put ‘apps’ or ‘telehealth’ or a myriad of other terms into the search engine, you get many hits!).

Before describing at some length why this editor considers the document to be so important, it is of course important to recognise that there will be an election in six months’ time so both the funding and the priorities of the NHS may well change before it has even got beyond the very first set of commitments. A further point is that, were the NHS to meet all the commitments it has made, even in recent years, it would be a very different organisation to that that it is: commitment do not necessary result in delivery.

The document is subtitled “A framework for action” which is a good description. it contains many individual commitments. However few are are sufficientlydetailed to hold anyone to account over, although  the NIB does commit “Later this financial year” to publish a set of ‘roadmaps’, laying out in greater detail who will do what to transform digital care, as well as publishing an evidence base, which captures key knowledge and learning from experience in England and internationally.

Rather than reinterpret the whole document, what follows is the key sections that this editor considers particularly important. Everyone is encouraged to read the whole NHS document though as if your are into delivering integrated care using technology, apart from attending the RSM conference coming up shortly, this is what you should read, in full.

The framework is intended to:

• ‘enable me to make the right health and care choices’ – citizens to have full access to their care records and access to an expanding set of NHS accredited health and care apps and digital information services;
• give care professionals and carers access to all the data, information and knowledge they need’ – real-time digital information on a person’s health and care by 2020 for all NHS-funded services, and comprehensive data on the outcomes and value of services to support improvement and sustainability;
• make the quality of care transparent’ – publish comparative information on all publicly funded health and care services, including the results of treatment and what patients and carers say;
• ‘build and sustain public trust’ – ensure citizens are confident about sharing their data to improve care and health outcomes;
• ‘bring forward life-saving treatments and support innovation and growth’ – make England a leading digital health economy in the world and develop new resources to support research and maximise the benefits of new medicines and treatments, particularly in light of breakthroughs in genomic science to combat long-term conditions including cancer, mental health services and tackling infectious diseases;
• ‘support care professionals to make the best use of data and technology’ – in future all members of the health, care and social care workforce must have the knowledge and skills to embrace the opportunities of information;
• ‘assure best value for taxpayers’ – ensure that current and future investments in technology reduce the cost and improve the value of health services and support delivery of better health and care regardless of setting.

Helpfully it recognises that “For care professionals, from social workers to doctors and nurses, the arrival of the digital age has often been experienced not as a force for good but rather as an intrusive additional burden in an already pressured existence.” (P8) It goes on then to recognise that failure to take advantage of time & resource saving IT is bad for patients, professionals and taxpayers. The answer to the title of the next section “Can it be done?” is unequivocal: “Many other industries, including safety-critical ones, have transformed their use of information.” (P10) Many examples are given, including Airedale  where “A reduction in local hospital admissions of more than 45% has been reported”… There is also recognition that “telehealth, apps and other digital tools” empower patients to self-care.

One of the few statements in the document that this editor feels requires better proof comes at the end of:

By 2020 there will be a significant increase in the percentage of over-65s who have smartphones and access to broadband, and a combined multibillion-pound annual purchasing power. Good health and care will be top of their priorities. (P13)

Perhaps this Editor has spent too long in places where people do not put their health at the top of their priorities, however in my experience only some 20% of people even over 65 currently do.

Passing over Where are we now? and moving to What has to change?, approach seems to be well described, the following particularly appealing “We will be tight on standards and definitions, and clear on expectations regarding interoperability, but we will support local decision-making on systems, programmes, interfaces and applications.” Sadly the comments on resources are, as might be expected, full of get-outs:

We do not know what a future funding settlement will be for the Department of Health and the NHS, nor for its technology priorities. The Five Year Forward View identified that delivering on the transformational changes it proposes and the resulting annual efficiencies could – if matched by staged funding increases as the economy allows – close the £30 billion gap by 2020/21. A recent study for NHS England24 suggests that digital investments deployed as part of transformational change can deliver significant savings – contributing to short-term savings and, in the longer term, to the sustainability of services. (P17)

Priorities to deliver radical transformation in the following areas are :

• ‘enable me to make the right health and care choices’;
• ‘give care professionals and carers access to all the data, information and knowledge they need’;
• ‘make the quality of care transparent’;
• ‘build and sustain public trust’;
• ‘bring forward life-saving treatments and support innovation and growth’;
• ‘support care professionals to make the best use of data and technology’;
• ‘assure best value for taxpayers’.

The paper then looks at each of these in turn. Under the first is included the statement: “A national approach to the accreditation and kitemarking of apps, devices and digital services, for example, will help give users, consumers and care professionals confidence to use them.” (P22) Later it explains that:

The NIB will set up a task and finish group with clinical and civil society leaders on the regulation, accreditation and kitemarking of technology and data enabled services, including apps, digital services and associated mobile devices. This is in order to support innovation, and consumer and professional confidence, including enabling GPs to be able to prescribe them. It will publish proposals by June 2015 and kitemaking of apps will begin by the end of 2015. Kitemarked services will be able to use the NHS brand and to be accessible through NHS Choices.

The NIB will support the development, diffusion and adoption of low-cost high-efficacy apps with a particular priority on mental health services, for example for cognitive behavioural therapy. The Department of Health (DH), NHS England, Academic Health Science Networks (AHSNs), the HSCIC and PHE, in partnership with the Behavioural Insights Team and Nesta, will start by launching a dedicated apps innovation prize process in mental health, drawing on behavioural insights and rapid trial methods. The intention will be to develop a series of easy-to-use, personalised cognitive behavioural therapy (CBT) applications, tracking impacts on employment and other outcomes as well as mental health, with trials beginning in 2015… (P24)

The NIB will oversee the launch of a national experiment to give patients a personalised, mobile care record which they control and can edit but which is also available in real time to their clinicians. (P25)

I understand when Tim Kelsey mentioned this at eHI, he said NICE would be involved in it, which was cheering news to this editor as it has been his crusade for some time to get NICE to enable clinicians to make a rational choice involving apps or drugs, or a combination of the two. However NICE is not specifically mentioned here, even though they are on the NIB.

Under the second radical transformation item is the statement:

Current advances in the field of cognitive computing, coupled with the ubiquity of smart technology that records and transmits medical grade biomedical data through digital media and smartphones, indicate that we are on the edge of radical change. The potential to transform remote healthcare assessment and interaction now exists. (P28)

…and the commitments:

In addition to the work on structured data standards, NICE, in collaboration with other members of the NIB, will convene a forum to support the adoption of semantic web technologies and the further development of established semantic standards, thus improving the management of less structured information within the health and care system. (P30)

The NIB will work to drive up adoption and optimisation of mobile technologies that enable healthcare professionals, service users and carers to collaborate effectively in the organisation, delivery and evaluation of care in community and home care settings. (P31)

In the following section there is a commitment which will be particularly welcomed by a few start-ups working in this area:

NHS England will lead on a new Insight Strategy, to be published by April 2015, which will set out proposals for making better use of patient outcome and experience data, including Friends and Family Test, public surveys, Patient Reported Outcome Measures (PROMs) and related measures, social media analysis, online ratings and feedback. (P35)

Jumping on, there is a useful clarification: “Our objective is to establish England as one of the world’s leading centres for innovation in digital health and care services…followed by a paragraph perhaps worth quoting whole:

Better data will not just enable patients, service users, citizens and professionals to benefit from genomic science but could transform life sciences and research fundamentally. It will drive new approaches to health and care that transcend traditional delivery boundaries, embrace new technologies and establish new partnerships across geographies and clinical and diagnostic specialisms. It will aid rapid implementation of the innovation pipeline from discovery to adoption and spread into clinical practice. It will transform diagnosis. We can create new collaborations between the NHS, technology companies and patients to unlock the potential of data, technology and digital to create products for smarter, faster and better healthcare and thereby grow the digital health sector, an emerging area of UK innovation. (P43)

Whilst we all knew that, it’s great to see the NHS saying it (though are they aware of the challenges that the EU Data Regulation due in 2015 will put in their path to achieve this?).

Among the following commitments is “barriers to innovation will be removed” (P44) – now where have I read that before? Even more important is this commitment to exploring complex interventions:

NHS England with other members of the NIB, including DH, will develop a small number of ‘test bed’ sites alongside our AHSNs. They would serve as real-world sites for ‘combinatorial’ innovations that integrate new technologies, bioinformatics, new staffing models and payment-for-outcomes. UK and international innovators will be able to bid to have their proposed discovery or innovation deployed and tested in these sites. We will involve frontline staff to an unprecedented extent in the design of innovations, and in implementing the necessary system changes. (P45).

It’s good to see recognition of the informatics profession in the NHS – this commitment gives a flavour:

The NIB and its Strategic Clinical Reference Group will, with clinical leaders, develop proposals to support an emerging federation for the informatics profession. The longer-term vision involves the development of a Faculty for Health Informatics for medical practitioners and a Federation for Informatics Professionals for non-clinicians. (P49)

In the penultimate section, on efficient investment, two commitments particularly appealed to this reviewer:

The NIB will publish by March 2015 a roadmap for alignment of existing national programmes with the core outcomes of this framework to maximise their cost and clinical benefits, together with proposals for the termination of ineffective investments.

Security and interoperability standards for common services to be purchased directly by care providers, such as email, will be published by 1 April 2015, which will allow them to connect to the national infrastructure and provide confidence for inter-organisational transactions. (P52)

In the final section on Making it happen, these particular commitments are worthy of repetition:

We have also heard from many GPs, for example, that developing an NHS kitemarking scheme for apps and digital information tools for their patients would increase their confident use of these services. In addition, the NIB proposals foresee significant new initiatives in widening digital participation among carers, patients and the general public. (P54)

We will take advantage of the ever-decreasing cost of technology through increased use of commodity technologies and simple, flexible procurement routes, such as G-Cloud and the Digital Services Framework. We will develop an action plan to improve competition within the health technology market to obtain better-value services and save money for the taxpayer while ensuring that plans are in place to safely and efficiently exit from key contracts coming to an end over the next few years.

Our ambition is to create ‘health-as-a-platform’, using technology to break down silos, join up services and reduce duplication….We will default to open by working in the open and ensuring all new source code is open and reusable… (P55)

All in all, a hugely impressive document, the impact of which will be truly momentous if a substantial part of it can be delivered.