Evidence submitted by James Stuart (EPR
02)
1. EXECUTIVE
SUMMARY
1.1 This is written evidence to the Parliamentary
Health Committee regarding the Electronic Patient Record (EPR)
and its use. This evidence is original and has been compiled from
in-depth working knowledge of changing patient requirements, NHS
needs and government drivers.
1.2 Why is EPR important? EPR is important
because of:
— changing population demographics
— changing needs and requirements
— new procedures and medications
— the need to increase the delivery
of care to patients
— the need to achieve consistently
high levels of quality care
1.3 This points to an ever increasingly complex
healthcare system. The traditional paper based system, which has
served its purpose well until now, will no longer be fit for purpose.
On the grounds of patient safety and increases in patient care,
as well as cost effectiveness, the paper based system will not
be able to keep pace with the changes outlined. Therefore a new
system that will allow increases in patient care and cost effectiveness
should be investigated and introduced if found to be beneficial.
This solution is likely to be EPR: a new method of information
management using technology as a core business enabler.
1.4 A full investigation will be required
to assess the present information needs and future requirements.
This investigation will be independent. It will produce a detailed
plan of progression in order to advance the concept and reality
of EPR for the benefit of patients and the future of healthcare
in the UK.
1.5 EPR will also give rise to a new generation
of local, regional and national information analytics essential
for prevention, care provision and disease control. Reference
3.4.
2. INTRODUCTION
2.1 Introduction of the EPR will be a major
step forward in the enhancement of patient care and safety. If
implemented and tracked properly, EPR can also generate significant
and sustainable cost savings and productivity increases. It is
this implementation, and overcoming the NHS cultural barrier of
resistance to change, which will provide the greatest challenge.
In order to avoid costly project overruns of the like that has
been recently experienced, such barriers and other mistakes should
be understood and appreciated. Safeguards will be put in place
to avoid a re-occurrence of the mistakes of the past.
2.2 This will require a high degree of planning
and communication as well as the early identification, tracking
and realisation of business benefits in order to provide the required
enhancements in patient care and safety, and the cost savings
/ productivity increases.
2.3 The early focus on patient care along
with the early engagement with managers and stakeholders will
be necessary to ensure the success of EPR as a properly designed
and implemented programme of improvement.
2.4 EPR will also allow the public and private
sector combination of information to provide a full nationwide
view of health and health trends. This can be utilised to drive
health improvements for the benefit of the potential patients
and at much lower cost to the NHS.
3. ADDRESSING
THE ISSUES
3.1 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 systems?
3.1.1 Patient information will have to be
locally inputted. Decisions will have to be made on the viability
of locally held Vs nationally held data. For ease of use and cost
effectiveness the "hub and spoke" nationally centred
model would be the most efficient. However, there may be a strong
GP / PCT desire to retain control of patient data locally. This
latter will decrease efficiency for out of locality treatment
and for any necessary trend analysis.
3.1.2 EPR should exist to ensure ease of
use and the relative free flow of essential information. It should
not exist to create further barriers and to increase cost.
3.1.3 For security and access reasons, patient
information will have to be tiered:
Tier 1: contact details and unique identifier
Tier 2: Outlying medical history
Tier 3: Detailed medical history
3.1.4 It may be that patients can be given
the right to prevent their personal data being placed on systems.
If this is undertaken, there must be relevant and easy to understand
information regarding the advantages of EPR and the disadvantages
of not being on the system, as well as allaying any security fears.
3.1.5 Emphasis should be on full population
inclusion. For the patient this should not be a matter of information
management, rather a matter of enhanced care delivery and patient
safety.
3.1.6 EPR will also give the private sector
the distinct opportunity to add to the available health records.
This can only benefit overall patient care and the tracking of
statistical trends to assess future need. In a world of changing
demographics and finite resources, the assessment of the future
need is likely to prove critical. Therefore, it is essential to
gain a holistic view and not just a partial view.
3.2 Who will have access to locally and nationally
held information and under what circumstances?
3.2.1 Access will be strictly controlled.
Access will also be strictly audited. Information changes will
be tracked. How information will be inputted and the quality of
this information will have to be standardised to negate error
and misunderstanding.
3.2.2 Access to patient information will
be based on need. For example, the need of a medical secretary
will be different from the need of a GP and the need of a PCT.
This is where access will be controlled.
3.2.3 Doctors directly treating the patient
will have full access to data. Those national agencies providing
information and analysis, for example the NHS Information Centre
and the Secondary Uses Service, will have access to anonymised
data only. This data may or may not be encrypted.
3.3 Whether patient confidentiality can be
adequately protected?
3.3.1 All data—whether paper based
or electronic—is at risk. These risks include unauthorised
infringement. Risks also include loss, fire and spoiling of paper
based records. They also include disposal of old records.
3.3.2 No records of any format can ever
be assumed to be 100% secure.
3.3.3 However, with present mechanisms,
there can be a high degree of surety regarding confidentiality,
risk and disposal. These protective mechanisms are increasing
in sophistication.
3.3.4 Although there are objections over security,
the underlying main objection to using e-information mechanisms
is not necessarily security. It is more a matter of perception.
3.3.5 Overall protective mechanisms can
only be finalised following the decision on having either locally
held data or nationally centred data. Some similarities exist
between the two choices—for example, encryption and secure
access—yet with some differences that have to be examined—for
example, which type of data store to protect and the multiple
access points into the data store.
3.3.6 Data warehousing in general is a secure
repository for data. This can also provide significant safeguards
over traditional paper based records in terms of other security
and backup, as well as physical space and the real time updating
of records.
3.4 How data held on the new systems can and
should be used for purposes other than the delivery of care eg
clinical research?
3.4.1 The use of paper based records for
purposes other than direct care can be both costly and unwieldy.
As a result there is no clear national view of the nations health
and future trends from the holistic public sector and the private
sector. For example, a third of all hip replacement operations
are conducted in the private sector. This is not included in the
overall countrywide health statistics.
3.4.2 E-data, updated in real time or on a daily
basis, will provide access to a wealth of analysed information.
This information can provide snapshots or general trends. These
will prove essential in the planning of patient centric healthcare.
In todays world this is important for health prevention and the
out of hospital care agenda to increase relevant care delivery
and reduce costs.
3.4.3 Real time updating of e-data will also
prove to be an essential component in combating any outbreak of
disease. For example, in an extreme case, a H5N1 pandemic if the
virus genetically jumps species to become highly pathogenic to
humans. During the Sydney Olympic Games (2000) health information
from the immediate population was updated every 4 hours in order
to gain early warning of any infectious conditions.
3.5 Current progress on the development of
the NHS Care Records Service and the National Data Spine and why
delivery of the new systems is up to 2 years behind schedule?
3.5.1 No comment can be made on the specific
lateness of this particular project.
3.5 2 However, from a significant level
of public sector consultancy experience, there is a general observation
that may be relevant. The observation is that the majority of
public sector projects/programmes exceed budget and time. In general,
the main reasons for this are:
— initial requirements are vague;
— requirements are prone to change
from public sector managers or politicians following the design
or implementation stage;
— there is little or no change control;
— there is little or no change management;
— there is little or no identification,
tracking or realisation of benefits—the project is carried
out because someone told them to do it. This is poor communication
and management; and
— there is significant public sector
cultural resistance to change.
3.5.3 This latter point is wholly concerned
with the amount of unfocused change there has been, typified by
a lack of relevant communication to all levels of staff and a
lack of realised benefits due to project overruns in both time
and money.
3.5.4 Only if these points are understood
and successfully tackled will any future programme be successful
in terms of the benefits delivered and costs incurred. The Health
Committee have an opportunity to turn the tide of NHS implementations
and ensure a successful outcome for EPR.
4. RECOMMENDATIONS
4.1 To engage in a proper and full scoping
study in order to identify the advantages/disadvantages of EPR
versus the advantages/disadvantages of non-EPR. This study should
be conducted independently. It should have a specific timeline
for completion and be formally presented to the committee. Only
by this means can every member of the committee gain the high
level view of the same information. Feedback should be incorporated
into the study.
4.2 Publish the scoping study and grant
access to interested parties. This will begin the necessary dialogue
and uncover barriers.
4.3 If the decision is to progress with
the process, the study should be used to begin the full and in-depth
consultation with interested parties. This consultation will be
for the purposes of engaging with the barriers at an early stage—and
finding a way around the barriers—as well as to raise awareness/educate
with respect to the benefits achievable—and then gain wider
support.
4.4 There should then be a final decision
on data and information standardisation.
4.4 This will be followed by a decision
on the local or national data model.
4.5 Followed by the decision on confidentiality
measures and access.
4.6 There should be a pilot project to assess
on the ground impact as well as take account of any unforeseen
difficulties.
4.7 Lessons learned from 4.6 should be cascaded
into an overall implementation plan for national EPR.
4.8 The core benefits will have to be identified.
4.9 A communication plan should be in place
to keep all interested parties properly informed and to deal with
barriers should they arise.
4.10 To minimise the already extensive delays,
progress should be agreed as a matter of urgency.
James Stuart
Health and Information Consultant
February 2007
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