Select Committee on Health Written Evidence


Evidence submitted by the Royal College of Nursing (EPR 43)

1.  EXECUTIVE SUMMARY

  1.1  The RCN supports the direction of travel of the national programmes in all four countries of the UK, including the English National Programme for IT. As was pointed out in the recent Royal Society report Digital Healthcare: The impact of information and communication technologies on health and healthcare that, "the single most important factor in realising the potential of healthcare ICTs is the people who use them".[55]

  1.2  Nurses are the largest group of healthcare professionals in the NHS, and because of their particular role in co-ordinating as well as delivering care to patients nurses are already major generators of patient information and will be major end-users of the electronic patient record. It is therefore vital that they are fully involved in the development of the e-health programmes, and have the appropriate knowledge and skills to obtain, hold, share, use and store sensitive information, whether paper-based or paperless, about patients.

  1.3  Connecting for Health and the Strategic Health Authorities to whom responsibility for implementing the programme has now been devolved should ensure that:

    —  Nurses are fully involved in decisions at local, regional, and national levels concerning the development and use of the electronic patient record.

    —  Adequate resources in terms of money and time, including backfill requirements are allocated to the education and training of nurses to enable proper use of the EPR, including the use of structured documentation and standardised terminology.

    —  The nursing content of the EPR is nationally agreed and is included in the specifications for all EPR systems.

  1.4  Connecting for Health should restore immediately the funding to support nurse engagement.

  1.5  Investigation is undertaken to identify the most appropriate devices to support point of care recording in settings outside hospitals.

  1.6  Local employers must ensure that frontline staff have the time and skills necessary to ensure that patient are able to make fully informed decisions about the safeguards and choices related to information sharing and the implications of measures such as sealed envelopes.

2.  INTRODUCTION

  2.1  The Royal College of Nursing (RCN) represents over 390,000 registered nurses, midwives, health visitors, nursing students, health care assistants and nurse cadets in the UK. This makes the RCN the largest professional union of nursing staff in the world. The RCN promotes patient and nursing interests on a wide range of issues by working closely with government, the UK parliaments and other national and European political institutions, trade unions, professional bodies and voluntary organisations.

  2.2  The RCN believes in the effective management and use of information to support excellence in patient care and nursing practice. Information management is central to the RCN definition of nursing as "the use of clinical judgement in the provision of care"[56]. The expansion of nursing practice and the requirement to take on new tasks and roles in response to future healthcare challenges increases the significance of clinical decision making in nursing practice and with it the need for such decisions to be supported by accurate and timely information. This requires nurses to develop their skills in decision making and information management, and also to be fully engaged with the development of Information and Communication Technologies (ICTs) in healthcare, in particular the development and use of the electronic patient record (EPR).

  2.3  For these reasons the RCN supports the direction of travel of the national programmes in all four countries of the UK, including the English National Programme for IT. As was pointed out in the recent Royal Society report Digital Healthcare: The impact of information and communication technologies on health and healthcare that, "the single most important factor in realising the potential of healthcare ICTs is the people who use them".[57]

  2.4  As the largest group of healthcare professionals in the NHS, and because of their particular role in co-ordinating as well as delivering care to patients, nurses are already major generators of patient information and will be major end-users of the electronic patient record. It is therefore vital that they are fully involved in these developments, and have the appropriate knowledge and skills to obtain, hold, share, use and store sensitive information, whether paper-based or paperless, about patients.

3.   What patient information will be held on the new Local and National Electronic Record Systems, including whether patients may prevent their personal data being placed on the system

  3.1  If the EPR is to achieve its main purpose of enabling safe, comprehensive, and co-ordinated care, the patient record must contain all the information that is necessary to support clinical decision making. In addition to administrative data such as patient identity, demographic data, and service data, the clinical information required includes information about the problems with which the patient presents, assessment and diagnostic data, allergies, current and past medications, diagnoses, interventions and treatments, and expected and achieved outcomes.

  3.2  In order to achieve co-ordinated multi-disciplinary care, the record must not be limited to medical data but must include the parallel clinical data from all disciplines, including nursing. This means that nursing diagnoses, interventions, and outcomes must be recorded alongside medical diagnoses, interventions and outcomes. The system should allow users to record all actions prescribed by the plan of care, including progress notes, flowcharts, critical paths and other forms of nursing documentation. There are recognised and well researched classifications of nursing diagnoses, nursing interventions, and nursing outcomes, and the terminology to be used to describe them in the patient record is already incorporated within SNOMED-Clinical Terms, which the NHS has already decided should be the standard terminology for use in electronic records. Nursing data standards (including Nursing Minimum Data Sets) are in use in many countries; in the UK national agreement on standards for nursing record content and nursing data is urgently needed. The RCN is currently seeking support for work on practice standards for the nursing content of patient records.

  3.3  In order for the information to be easily accessed and retrieved, the record must be properly structured, and in order to avoid ambiguity, the information must be expressed in standardised terminology. This will require a move away from current methods of documentation that rely on unstructured narrative and idiosyncratic language. The RCN recognises that these requirements demand considerable investment in education and training, and are concerned that these issues are being neglected in the current debates which appear to focus exclusively on security and confidentiality.

  3.4  The RCN believes that patients should own and control their own data. This means that they must have the right to withhold it. However, where their personal data is relevant to the quality of care they will receive is properly explained to people, and if the safeguards for confidentiality and security are adequate, then very few people would withhold this data. A case was reported in the press recently where a woman died because although she was seen by no fewer than eight different doctors during the few days before her death, none of them had access to the information which would have enabled appropriate treatment to prevent her death.

  3.5  However, the RCN supports the concept of the sealed envelope where patients can choose to withhold certain aspects of the information stored on the EPR noting that clinical staff who have the skills and time to do so must ensure that this is a fully informed decision by the patient. This is particularly important with young people and other vulnerable groups who may not be used to claiming their rights to dissent or refuse sharing of information.

  3.6  It is important to recognise that while people may be able to exercise these rights when they are well and able to articulate their needs, the situation may be very different at the point of care when a patient is unwell, frightened, in pain or even unconscious.

4.   Who will have access to locally and nationally held information and under what circumstances

  4.1  The key principle is that access should be restricted to those who need to know, but that everyone who needs to know has access to the relevant information. This means that all health care professionals who are involved in the care of a patient need to have the information about the patient that is relevant to the care to be provided.

  4.2  If the purpose of the information is to ensure that the patient receives safe and appropriate care wherever they receive it, we see no point in a distinction between what is available locally and what is available nationally. The data may be held centrally or in several places; what matters is that wherever it is held it can be made available at the point of care.

5.   Whether patient confidentiality can be adequately protected

  5.1  Issues of security and confidentiality are of paramount importance both to patients and to health professionals. However, they apply equally to paper-based as to computerised records. The security systems now available for computer systems are much more rigorous than any system currently available for paper records. We are aware of the very careful consideration currently being given to this issue within the NHS IT programmes. Electronic systems must also operate within the law, in particular legislation relating to data protection and the professional duty to maintain patient confidentiality.

  5.2  The duty of confidentiality is a core element of the Code of Professional Conduct published by the Nursing and Midwifery Council (NMC) to which all registered nurses must adhere. Breach of confidentiality is a serious disciplinary matter. All nurses understand this. Confidentiality in respect of computerised patient records is no different from confidentiality in respect of any other aspect of patient information.

  5.3  The RCN believes that with the right training and appropriate access to data patient confidentiality can be adequately protected. Electronic systems must support an audit trail which identifies where, when and by whom the clinical record has been accessed or amended. There must be universal policies and procedures and methods shared by organisations to ensure patient data is entered and extracted according to agreed standards. The RCN has recently published guidance for nurses entitled Competencies: An integrated career and competency framework for information sharing in nursing practice. [58]

6.   How data held on the new systems can and should be used for purposes other than the delivery of care eg clinical research

  6.1  The RCN is interested in the secondary uses of aggregated anonymised data which computerisation makes possible. Research in other countries (eg Belgium and USA) using data mining techniques applied to large databases of anonymised patient records is already showing how clinical outcomes can be identified to provide the evidence base for best practice in nursing and in other clinical areas.

  6.2  These data sets have other applications for instance nursing clinical data can be linked to administrative and staffing data to show the effects of different levels of staffing and skill mix for use in workforce planning.

  6.3  In short, the information contained in aggregated data is as important and useful for management and policy decisions as is individual patient data for clinical decisions. However, its ability to achieve these purposes depends entirely on the inclusion of appropriate nursing content in a structured and standardised format as outlined above. Thus use of data in this way must of course be properly regulated in exactly the same way as are other research projects.

7.   Current progress on the development of the NHS Care Record Service and the National Data Spine and why delivery of the new system is up to two years behind schedule

  7.1  The RCN recognises that although there are problems, an enormous amount has been achieved. However, we have serious concerns about the lack of consultation, communication and engagement with frontline staff, especially but not limited to nurses, which will certainly (as considerable research in other countries has shown) inhibit its proper use.

  7.2  Surveys undertaken by the RCN during the past three years concerning nurses' views on the introduction of IT and in particular the EPR in the NHS have shown that while nurses support these initiatives overall, they do not have adequate information about these developments, are not adequately engaged in them, are not adequately involved in the development of the systems, and are not receiving appropriate training in their use.

  7.3  In 2006[59] the RCN survey of 4,500 members found 65% had not received adequate information or any information at all about the new system; while 74% said there had been inadequate consultation or no consultation. The results showed there had been very little progress on this issue in the two years since the first IT survey was carried out by the RCN when 77% of members expressed concern about the lack of engagement. This has led to a loss of confidence in the introduction of IT into the NHS. In 2004 the survey showed that 70% of members believed that this technology would improve patient care, and 59 per thought it would improve nursing practice. In 2006, 56% of nurses surveyed believed computer records would improve patient care and 49% nursing practice. However, detailed analysis revealed that those respondents who had direct experience of using the systems were more positive than those who did not.

  7.4  We repeat, and cannot stress too strongly, the need for the engagement of the nurses who will be the main users of the electronic patient record and the systems that support it. We were especially distressed to hear at the meeting of the Connecting for Health National Advisory Group held on March 13, that financial support for the Nursing Professions Information Group has been withdrawn, and that the Connecting for Health Nursing Development Programme has been discontinued. We repeat that these measures, affecting as they do the very group in which investment is most needed, will be counterproductive.

  7.5  The RCN believes that the Connecting for Health programme is very ambitious and subject to timescales which could not realistically be achieved. Although the aims were laudable, the top-down, contract driven approach to implementation has presented tremendous challenges to those who are trying to introduce and implement new systems and ways of working within the clinical environment. We note the very different modes of implementation being used in Scotland and Wales, and endorse the recommendation No 4 of the Royal Society report Digital Healthcare: The impact of ICT on health and healthcare that particular attention is paid to evaluations of the different speeds and scales and the levels of user engagement in the different countries.

  7.6  There are a number of other issues and policy drivers which are likely to bring further challenges to the E-Health programmes and potentially delay their implementation or indeed compromise their aims which the RCN believes the should be brought to the attention of the Committee specifically: the policy shift from acute to community; education and training; and evaluation.

  7.7  We are also concerned that the focus on the acute as opposed to the community health care setting runs counter to government policy to move care from the acute to the community. The focus of EPR development appears to be on its use in secondary care. This does not recognise two key facts: that healthcare for most people most of the time tends to be delivered in their own homes and by community based services, not in acute hospitals; and government policy as outlined in White Paper Your Health, Your Care, Your Say sets out to shift care closer to home away from the acute to the community setting.

  7.8  Furthermore, basic ITC infrastructure is especially inadequate in the community setting, and nurses as a key health group have limited access. Community nurses such as health visitors and district nurses have particular difficulties in accessing computers and in accessing and recording patient information at the point of care; much greater investment is necessary in the development and testing of mobile communications. The emphasis to date appears to have been largely on systems to replace paper, rather than systems integrated into and supporting workflow i.e. the care process.

  7.9  While the technical challenges of introducing the electronic patient record are enormous, the culture change that is also required is even greater. This will require major investment in education and training—not only training in how to use the particular systems, but also in understanding the underlying concepts of information management. Adequate funding (including funding for backfill to enable staff to be released from their normal work roles) and time must be provided by employers. Training must be undertaken by trainers who understand the complexities of the clinical process and the way that nurses practice. "One size fit all" training will not be sufficient to address different levels of knowledge and skills amongst the entire workforce. Special attention must be paid to those nurses who, for whatever reason, lack basic IT skills. Supported "booster training" for these nurses must be provided.

  7.10  Education is necessary to ensure existing nurses (a) understand the role of technology in the delivery and organisation of care; (b) understand the legal and ethical issues associated with managing and sharing patient information; (c), can extract data to support decisions and monitor the outcomes of practice; and (d), document nursing practice with this new technology. However, changes in pre-registration education are at least as important. We endorse the recommendation of the Royal Society, "...that the higher education institutions and professional bodies responsible for the different disciplines adapt their curricula to integrate the use and understanding of healthcare ICTs into the basic training and continuing professional development of healthcare profession."

  7.11  The RCN is devising a set of E-Health Principles to provide standards against which developments, proposals and initiatives in e-Health can be evaluated. These principles will test the extent to which these developments will support nursing practice and enable nurses to deliver high quality care for patients. These principles will cover ethics, trust, confidentiality, quality and overall the promotion of patient care and a patient centred approach.

8.  RECOMMENDATIONS

  8.1  The RCN has a number of recommendations for consideration by the Committee.

  8.2  Connecting for Health and the Strategic Health Authorities to whom responsibility for implementing the programme has now been devolved should ensure that:

    —  Nurses are fully involved in decisions at local, regional, and national levels concerning the development and use of the electronic patient record.

    —  Adequate resources in terms of money and time, including backfill requirements are allocated to the education and training of nurses to enable proper use of the EPR, including the use of structured documentation and standardised terminology.

    —  The nursing content of the EPR is nationally agreed and is included in the specifications for all EPR systems.

  8.3  Connecting for Health should restore immediately the funding to support nurse engagement.

  8.4  Investigation is undertaken to identify the most appropriate devices to support point of care recording in settings outside hospitals.

  8.7  Local employers must ensure that frontline staff have the time and skills necessary to ensure that patient are able to make fully informed decisions about the safeguards and choices related to information sharing and the implications of measures such as sealed envelopes.

Royal College of Nursing

March 2007










55   Royal Society (2006) Digital Healthcare: The impact of information and communication technologies on health and healthcare. London. Royal Society. http://www.royalsoc.ac.uk/displaypagedoc.asp?id=23835 Back

56   Royal College of Nursing 2004 Defining Nursing London, Royal College of Nursing; http://www.rcn.org.uk/downloads/definingnursing/definingnursing-a5.pdf Back

57   Royal Society (2006) Digital Healthcare: The impact of information and communication technologies on health and healthcare. London. Royal Society. http://www.royalsoc.ac.uk/displaypagedoc.asp?id=23835 Back

58   RCN (2006) Competencies: an integrated career and competency framework for information sharing in nursing practice http://www.rcn.org.uk/publications/pdf/information_sharing_in_nursing_practice.pdf Back

59   RCN (2006) Nurses and NHS IT developments: Results of an online survey by Nursix.com[nbsp]http://www.rcn.org.uk/publications/pdf/nurses_and_NHS_IT_developments_survey_2006.pdf Back


 
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