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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