Share data
 appropriately to
 care appropriately

All too often, stories about information in the NHS and social care are about failure. Not just the failure of massive government IT projects but the tragic cases of personal harm and loss of life caused by the absence of proper knowledge sharing between care professionals and providers.

Inadequate records management and information sharing were identified as contributory factors in the deaths of Victoria Climbié in 2000, Penny Campbell in 2005 and Baby P in 2007.The Laming report into the death of Victoria Climbié concluded that: “Improvements to the way information is exchanged within and between agencies are imperative if children are to be adequately safeguarded.” In some cases, information sharing has been unduly inhibited by misperceptions about data protection requirements – this was highlighted by Lord Laming and other reports since, even in the recent Caldicott2 report on information governance.

Yet each day there are hundreds of thousands of successful information transactions that support the routine business of health and social care: GP referrals to hospitals, social care or therapists; laboratory and diagnostic imaging reports to GPs; intra‑hospital test requests and results; referrals from independent sector treatment centres to NHS care providers; emergency department attendance notifications, to name but a few.

A COMPLEX TASK
However, practice is highly variable both between and within care provider organisations. Academic research has demonstrated that the NHS is unacceptably tolerant of unsafe processes. Media reports have claimed that over a million NHS outpatient consultations are held each year without access to the patient’s medical notes. Software solutions for many of the routine information flows are often local to a community or service and incompatible with other software. Many high volume processes are still paper-based – hence the Secretary of State’s ambition for a paperless NHS by 2018.

How can information sharing in health and social care be made safe? The problem is multi-faceted and includes complex factors such as organisational policy, culture and leadership; adequate resources and training; appropriate data quality controls and well-aligned financial incentives. One vital component is professionally‑endorsed information standards for care services.

THE NEED FOR STANDARDS
The NICE clinical guideline for improving the patient experience (guideline 138) specifies the requirement for “coordinated care with clear and accurate information exchange between relevant health and social care professionals.” This implies the needs for information standards to enable the clear, accurate and safe exchange of knowledge.

There has been substantial progress in the technical standards for IT systems to exchange data and meaning. International standards development organisations such as ISO, HL7 and IHTSDO have produced widely used protocols for messaging, clinical document representation and coded vocabularies to precisely express clinical facts and opinions.

These standards provide compatible ways to share information without constraining commercial software innovation. They also act as a form of ‘corporate memory’, distilling the collective experience of information specialists from multiple international health IT projects into usable best practice.

However, what has been missing until now is an authoritative voice to state the professional requirements for document structure, content and process that can then be implemented in the technical solutions. What has typically happened is that the user group for a particular IT system or a clinical advisory group for a specific project will articulate the requirements. In some cases, professional societies have defined clinical requirements for records or processes. But professional requirements for information standards have remained piecemeal.

Given the government’s policy aim of opening up patient access to their electronic records, the need for standardised, organised and comprehensible records is even more pressing.

BCS, The Chartered Institute for IT, stated in 2011 that it is a priority to address the weakness in data quality at the point of collection through data standards, validation and enforcement. It recommended a multipronged approach including defining a minimum set of information, clarifying professional obligations and monitoring, clarifying legal obligations of organisations, greater audit scrutiny, and imposing standards in contracts. BCS recommended the creation and enforcement of clinical standards for record keeping, data recording and sharing, with intercollegiate standardisation across professional societies to ensure that information is comparable and terminology consistent.

DEVELOPMENT OF THE PRSB
In 2010, the Department of Health commissioned a joint working group to recommend how professional requirements and leadership could best support the development of electronic health records in line with national policy. This group built on earlier work led by the Royal College of Physicians of London and the Academy of Medical Royal Colleges that in 2008 had produced national standard headings and definitions for hospital admission records and handover and discharge communications.

The working group recommended the creation of an independent body to lead the development and professional assurance of clinical record standards across all specialties and clinical disciplines.

The Professional Records Standards Body for health and social care (PRSB) was formally launched at the BCS Healthcare Computing congress on 17 April 2013. The founder members were the patient representative group National Voices, the Royal College of Physicians, the Allied Health Professions Federation, the Royal College of Nursing, the Association of Directors of Adult Social Services, the Royal College of General Practitioners, the Academy of Medical Royal Colleges, the Royal College of Pathologists, the Royal College of Psychiatrists, the Royal College of Surgeons of England, the Royal College of Paediatrics and Child Health and BCS, The Chartered Institute for IT.

Professor Iain Carpenter, the Deputy Director of the RCP’s Health Informatics Unit who will be the first chair of the PRSB, says it will help organise the structure and content of health and care records around the needs of patients and the health and care sectors: “Acting as a partnership, PRSB will have direct links to the NHS in England, Scotland, Wales and Northern Ireland, thus ensuring a joined-up approach to record standards development. By uniting the development of both health and social care records, it will underpin and support the new commissioning structures and aim to ensure that patients no longer fall between the gaps created by separate record systems.”

AN INDUSTRY WELCOME
The creation of PRSB has been widely welcomed by clinical informatics leaders. Dr Mark Davies, Clinical and Public Assurance Director of the Health and Social Care Information Centre, stated that: “the professional standards for electronic record keeping are a fundamental element of successful IT enabled care... we need to ensure good outcomes are supported by good records.”

Dr Justin Whatling, Chair of BCS Health, said: “This is a major step forward in ensuring market‑driven standards exist for the way in which information is stored, retrieved and used to improve and integrated healthcare provision. As the professional body for IT and informatics, we’re delighted to be one of the founding members and actively contribute our experience and knowledge.” A particular contribution of BCS is to help ensure alignment and mutual learning between the professional and the technical standards worlds.

PRSB is now in the process of finalising its governance structure and planning its priority work programme for the next year of activity.
BCS believes that the UK can set a powerful example within Europe and beyond by demonstrating the importance of clinicians and end users setting and agreeing the standards that are used to record and share information.

ENFORCEMENT OF STANDARDS
Under the Health & Social Care Act 2012, the Secretary of State and the NHS Commissioning Board (NHS England) have the powers to publish information standards for the NHS and adult social care. The Act requires that providers of care “give due regard” to these published standards – legislative code words for the standards becoming mandatory.

The professional assurance of information standards that PRSB now offers will give credibility to such a political enforcement if these powers are invoked. However, the 2012 information strategy, The Power of Information, argued that a new approach is required to the adoption of standards: an approach that has “clinical and professional buy-in” and that “promotes adoption by the market.” The role of PRSB is entirely compatible with this ambition.

PRSB will not solve all the problems faced in NHS and social care information sharing, but it does offer a substantial and potentially transformative opportunity to get record keeping right. The mission of BCS is to enable the information society – supporting health and social care is central to this purpose.

‘To care appropriately, you must share appropriately’ (Caldicott2 Report).

FURTHER INFORMATION
www.theprsb.org.uk
www.bcs.org