Health and Social Care Bill

Memorandum submitted by the Health and Social Care Information Centre (HS 104)

Introduction

1. The Health and Social Care Information Centre (IC) was established in 2005 as a special health authority and is the national source of health and social care information in England.

2. The Bill recognises the importance of information in improving quality and efficiency and in achieving the Government’s aim of creating a health and social care system that is much more focused on patients, delivers better care and outcomes and ensures increased autonomy and clear accountability at every level.

3. The Bill also reflects the Department of Health’s report of its Review of Arm’s Length Bodies and plans to streamline this sector. The review established the IC as a shared, central data collection service for DH and it’s Arm’s Length Bodies, avoiding duplication and achieving significant economies of scale and other benefits from having a single centre of expertise with a specialised and scalable infrastructure.

4. We very much support the strategic objectives for information and welcome the opportunity to consolidate and develop the important contribution that quality information can bring for :

§ t he public - by helping people understand the range of health and social care services available and evaluate the factors which are important to them, including accessibility, quality of care and safety ;

§ p atients, service users, carers and their families – by empowering them to make choices about their health and wellbeing, and the care they require;

§ h ealth and care professionals – by identifying areas for attention, and for designing programmes to deliver improved outcomes for patients and service users;

§ h ealth and care organisations - to demonstrate their accountability nationally and to local people;

§ t he service as a whole – to help ensure that services are underpinned by principles of responsiveness, efficiency, and effectiveness .

Role of the IC

5. The Bill provides for the IC to be established as an independent non-departmental public body with statutory powers to collect, process and disseminate healthcare, public health and social care data for "secondary uses", including informing patients and the public, public and parliamentary accountability, policy development and monitoring, service commissioning and improvement, supporting financial flows, and research. In essence this means that we will:

§ collect, store and disseminate national data from all health and social care bodies

§ collect data that needs to be collected centrally to support the central bodies in discharging their statutory functions.

§ have power to require a health or social care body to provide us with information and to request any other person to provide information.

§ be able to consider additional requests from other arm’s-length bodies, and carry out those data collections if specific criteria are met.

§ have a duty to seek to reduce the administrative burden of data collections on the NHS with powers to support this – including, operating a national principle of "collect once, use many times" to ensure that the wider health and social care system works efficiently and avoids duplication; challenging those requesting datasets to be collected, identifying where those requirements can be met from existing data or can be collected in a less burdensome way

§ publish the data that we have collected in a non-identifiable, standard, and aggregated format for wider use by a multiplicity of customers

§ make more detailed data available directly to users with the necessary information governance approvals

§ assess the extent to which information we collect meets standards for processing information published by the Secretary of State or the NHS Commissioning Board. Publish a record of the results of the assessment if we have or plan to publish the information

§ support transparency and openness of data quality, national indicators and statistical methods with a model of continuous improvement in all these areas

§ develop a national framework for data quality assurance with clear national and local responsibilities for data quality and which is an integral part of our dissemination and publication processes.

6. Our statutory role also requires us to identify opportunities to collate and link data from other organisations that help to enrich the national data resource and support the Government’s policy on transparency. We are already one of the largest contributors to the Government’s data portal – www.data.gov.uk – and have plans in place to accelerate the range of data and information accessible to the public. We will continue to work closely with the Government Statistical Service to meet Public Data principles, particularly making detailed data widely available for re-use by commercial, third sector and others, while ensuring Official or National Statistics remain the key trusted source of information to support public debate.

7. Commercial, third sector and other information intermediaries will also be significant users of our data and services. We will work collaboratively with these organisations to support innovation and responsiveness to public and NHS requirements.

Challenges

8. The remit we have been given does not come without challenges.  To enable us to deliver these high expectations,  it is essential that detail and spirit of the Bill are actually delivered in practice and that barriers are not put in place to compromise or weaken the key principles it enshrines relating to information – namely:

§ need to ensure that the IC is the vehicle for the central collection, storage and dissemination of national secondary uses data from health, public health and social care bodies and that different parts of the system do not try to replicate this role. The economic situation and drive to improve public services places even greater emphasis on controlling the burden of central demands, minimising costs of data collection, making best use of what exists (including through linkage) and then making it transparently available for use by others in one place – that is the IC. The IC will need powers and authority to prevent wasteful fragmentation and duplication

§ need for clear and manageable processes for approving, managing and mandating central data returns. Controlling the burden of central data requirements on front line services is critical to reducing bureaucracy. This will not happen without the necessary authority over all central agencies, concomitant with their own formal powers

§ need to ensure that the IC is resourced adequately in order to exploit the untapped potential of data. The IC like many other public sector bodies is facing significant budget cuts and there is a high risk that the organisation will have insufficient resources to meet the needs and requirements of the system

§ need to be able to operate seamlessly across healthcare, public health and social care to drive more value out of the data currently available, through services which deliver the secure processing and linking of data from different sources and robust pseudonymisation/depersonalisation processes. Linking data from disparate existing datasets creates patient-centred and care-pathway oriented views of service use and needs, for commissioners, service managers, researchers and the public

§ public trust and the protection of patient confidentiality are paramount  The centralisation of data collection, linkage and de-identification in the IC would avoid the need for others to access patient identifiable data for secondary uses. The IC achieves and would expect to continue to be held to the highest standards of information governance and operate transparently, engaging directly with patients and service users and their representatives.

§ the realisation of the vision of the IC as new Non-Departmental Public Body is really important as the IC has to be seen to be independent and to be able to develop and execute the IC’s strategy in an independent and innovative way. It’s methods and activities must continue fully to meet professional standards, including the UK Code of Conduct for Official Statistics, and be open, transparent and subject to peer review. The IC’s collection, processing and distribution of "secondary uses" information should be separate from any central informatics agencies serving DH or it’s Arm’s Length Bodies - including the NHS Commissioning Board. It must also have sufficient direct contractual control and authority over all of its key information systems and data channels.  

March 2011