Evidence submitted by Mr Frank G Burns
(EPR 60)
INTRODUCTION
It is, frankly, astonishing that a Committee
of the House of Commons should, at the beginning of the 21st century
feel compelled to undertake an inquiry into the value and mechanics
of managing health care records in electronic form.
This is not a criticism of the Committee which
is rightly responding to the ongoing controversy attached to the
consistently poor performance of the NHS in convincing the "naysayers"
about the importance of electronic records and even poorer performance
over the last 20 years in delivering electronic records.
THE CASE
FOR ELECTRONIC
RECORDS
1. Healthcare is not a once in a lifetime
event. From the moment we are born we begin a process of interaction
with healthcare professionals that goes on throughout our life
and which becomes increasingly frequent as we get older.
2. We see many different healthcare professionals
in many different locations and for many different reasons throughout
our life.
3. Each time we meet a new healthcare professional
with a new health problem (or even an ongoing problem) there is
a fundamental need to treat the new problem in the context of
an accurate picture of our healthcare history.
4. A service delivery policy that "divvies
up" care between an increasingly wide range of public and
private service providers (both local and further afield) makes
the task of maintaining a properly integrated health record both
more difficult and more important.
5. The volume, range and complexity of data
items (about us) that our interactions with healthcare professionals
generate over our lifetime cannot be properly stored and most
definitely cannot be properly retrieved by paper record systems.
6. The difference in convenience and access
between electronic and paper records is like the difference between
using the local Library and an Internet Search Engine to research
a given subject. Electronic data capture has literally revolutionised
every aspect of our daily lives and the progression of this technology
is on an unstoppable evolutionary path.
7. Having to make the case for electronic
health records is on a par with having to make the case for the
telephone, the television, central heating, and the motor car.
THE SPECIFIC
QUESTIONS POSED
BY THE
COMMITTEE
What should be held on electronic records?
8. A record is a record—the electronic
record serves the same purpose as the current paper record. It
captures important information that may be important to the care
of the patient at a future date. An incomplete record can be dangerous.
The vast majority of patients will take for granted that their
health record (whether paper or electronic) should contain everything
that is relevant to their future care. The real issue of public
concern (and even this isn't a regular topic of conversation down
the pub) is the adequacy of arrangements to ensure that access
to records is confined to bona fide health professionals actively
engaged in the care of the individual concerned.
National versus local (and related issues of public
confidence)
9. If a patient is asked if they object
to the creation of an integrated health record at local level
for use by the health professionals involved in their care they
will generally not object. Not only will they not object to their
GP and specialists at the local hospital exchanging relevant information
they will be annoyed if failure to do so adversely affects their
care (as it often does).
10. This tolerant public attitude to a locally
created electronic record can be demonstrated by an exercise on
the Wirral where just such a proposition was put to the local
population (of 350,000 people) with an option to opt out. Only
25 people have asked to opt out over a period of more than two
years.
11. On the other hand if a patient is asked
if they object to their health information being "uploaded"
to a "national database", ostensibly for the same purpose,
they will form a different perception of what is being created.
They will wonder why their personal health information needs to
be held and managed on a national database and be concerned about
the greater potential for malicious use (whether by government
departments or otherwise unauthorised access). The downside of
the digital revolution that many ordinary people do understand
is the indiscriminate creation of personal databases for commercial
use and exploitation. People may well be prepared to put up with
the fact that their local supermarket analyses and sells information
about their purchasing habits but they will not tolerate even
the theoretical possibility of use of their personal health information
for other than their own care.
12. Public confidence in the development
and use of electronic records will be more easily established
if it is seen to be an operationally driven process of real-time
information sharing and record keeping for the healthcare system
in which they reside and in which they get their care.
13. The current NPfiT programme has given
a huge amount of priority to rolling out a summary electronic
record that can be accessed to support out of area emergency care.
14. This an enormous distortion of priorities
for a number of reasons:
— The vast majority of emergency care
is provided by the local NHS and as such it follows that clinician
access to a fully integrated local record would provide a much
more complete context for emergency treatment than will be available
through a "thin', incomplete, separately generated summary.
— Creating a national summary record
before the local systems are in place to properly populate this
with up to the minute information is putting the cart before the
horse.
— The actual frequency with which records
need to be accessed "out of area" in an emergency are
relatively rare and in many cases adequate information can be
got from the patient or by a phone call.
— The setting up of a national summary
record to support out of hours, out of area care should have waited
until the local systems were fully deployed. At that point it
might be possible to devise an access protocol that gives remote
carefully authorised access to a standardised summary of the local
record, via a secure national gateway, as an alternative to creating
and maintaining a separate national database for this purpose
where failure to update key information immediately and reliably
will pose risks to patients.
15. The clinical community in the NHS does
not see the national summary record as a priority compared with
the development of locally integrated electronic records that
support the work of local healthcare professionals in the day
to day care of their patients. This is particular important for
older and other patients with chronic illnesses who are simultaneously
accessing many services in tertiary , secondary and primary care
and who may, in the future, be receiving some of their care from
Non NHS providers.
Can patient confidentiality be adequately protected?
16. Where properly devised and implemented,
technical access controls to electronic records will be hugely
more effective than access controls to paper records.
17. A casual walk round any hospital chosen
at random will expose the myth that current paper records are
secure.
18. No doubt the committee will get wheelbarrow
loads of evidence from the technical experts on both sides of
the argument but the conclusion that has to be reached is that
no guarantees can be given that any system of record storage is
safe from determined attack by sophisticated criminals with unlimited
resources.
19. Nonetheless access controls to electronic
information does make it more possible to restrict day to day
access to patient's records to the people involved in their care
and to exclude access by those who are not. A patients name written
on a white board at the nurse's station is there for all to see—when
the same information is on a computer terminal it requires a password
to see and the computer will record the fact when people who don't
need to see it are trying access it.
20. The argument about security can only
be sensibly conducted in relation to day to day reality. The arcane
debates between the experts about the difficulty of achieving
the holy grail of the unhackable database should not get in the
way of the beneficial use of new technology in health care. As
with all things the balance of advantage has to be carefully weighed.
Large numbers of NHS patients come to serious harm on a daily
basis through poor access to patient's previous history or test
results and poor or non existent communication between health
and social care professionals. 10% of NHS patients (one million
patients!) suffer harm each year through some sort of error and
2000 of these will die. Many of these errors relate to record
keeping and communication. The massive improvements in this area
that come with properly integrated electronic records render the
technical debate on how to achieve ultimate security completely
redundant.
Why the delays with NPfIT?
21. The top down approach with centrally
procured systems that characterises the current national programme
arose from the acknowledged failure of the local implementation
approach advocated by the 1998 Strategy Information for Health.
22. It is important to note, however, that
the clinical emphasis and local approach advocated in Information
for Health was universally and enthusiastically supported
by all the key professional bodies.
23. It was clear at the time of launching
Information For Health that the senior management (CEO)
community and some of the political advisors would have preferred
a more prescriptive approach. This was principally attributable
to a desire on the part of CEOs to have this traditionally challenging
and difficult agenda delivered by the "centre" as a
gift wrapped and imposed solution. Many CEOs, DH officials and
advisors simply assumed that clinical IT could be rolled out across
the NHS in the same way that "check out" technology
could be rolled out by a supermarket chain. This was then, and
is now, a grotesquely over simplistic view of the transition from
paper records to electronic records in the Health Sector. The
problems encountered by the national programme provide graphic
and painful evidence of the consequences of underestimating the
complexity of implementing clinical IT systems and of trying to
impose standard solutions on healthcare professionals.
24. In the event the Information for
Health strategy failed through lack of financial support and
through not being given sufficient priority by local managers
(who, to be fair to them, were understandably pre occupied with
ever more demanding waiting time and other targets.)
25. The government, understandably frustrated
with this setback to their modernisation programme accepted the
case made by the advocates of a more robust nationally controlled
implementation and as a consequence NPfIT was born in 2002.
26. A simple summary of the reasons many
senior NHS staff would cite for the subsequent problems with the
national programme would include the following:
— A national procurement process that,
by its very nature, couldn't possibly allow sufficient engagement
by practising clinicians.
— A feeling by many of the clinicians
who did get involved in the procurement that in the end their
requirements and advice were subordinated to the bottom line cost.
— An impression that the most important
part of the contract was the penalty clauses for non delivery.
Whilst this has properly ensured that the NHS shouldn't pay for
what it hasn't had, the better outcome would be if the NHS was
in a position to pay up for timely delivery of what was bought.
— Covering the whole of England with
only 5 LSPs (contracts) created implementation projects of unprecedented
size and scale each involving up to 150 NHS organisations. Tackling
an agenda already known to be the most difficult change management
agenda for the NHS in the manner and on the scale being attempted
was always a very tall order.
— In many parts of the country, and
setting aside the widespread resentment regarding imposed, standardised
solutions, there have been mounting delays which have not been
helped by the withdrawal of one of the LSPs and 2 of the 5 LSPs
changing to a different clinical system supplier some years into
the programme.
— One major system supplier is currently
the subject of takeover discussions and openly acknowledges that
its definitive system (ie that which it is contracted to deliver
will not be fully developed until at least 2008).
— With contracts on this scale any
major problem affects large swathes of the NHS simultaneously.
Worryingly this has also been found to be true for system failures
where these have occurred.
— Many in the NHS believe that by the
time the systems procured are implemented and taking into account
the need to standardise and simplify to allow simultaneous multiple
site implementations—what they end up with will not be the
sophisticated clinical management systems that they need for modern
healthcare.
— There has been a serious lack of
local management ownership and accountability for ensuring successful
local implementation. Setting up a multi £ billion investment
in NHS IT with almost no personal accountability for delivery
on the part of local NHS CEOs was and remains a monumental error
of project management.
— NPfIT and IFH before it both addressed
the IT needs of an NHS in a position of the monopoly supplier
of healthcare. More recent policy is encouraging the entry of
private sector providers into the NHS in all sectors of care.
These new providers further fragment the treatment pathways and
as yet there is no clear view of how NHS clinical data created
in non NHS environments is to be integrated into the patient record.
— There is a lack of clarity (at least
to some) as to how under the national programme the fully integrated
local electronic health record is to be created. At one stage
it was though this might be done through the national spine but
more recently it seems that the programme will only a deliver
a summary emergency record through the national spine. As argued
previously the more urgent practical requirement for the NHS is
not the emergency record but the integrated local record that
supports 99.9 % of day to day care.
Where now?
27. There have been signs recently that
the DH has recognised the urgency of introducing more local ownership
and a degree of local freedom around enhancements to the systems
that are eventually delivered through the NPfIT process. The more
that this is possible (allowing for the limited room for manoeuvre
in contracts that have been entered into) the more positive the
NHS will become about this agenda.
28. The NHS is capable of implementing sophisticated
electronic patient management systems. GPs throughout the country
have been using their own electronic records for many years and
a number of hospitals had installed sophisticated systems before
the advent of NPfIT. In some areas of the country local progress
has been made in sharing electronically the information in Hospital
and GP records. It is important to recognise that in all these
cases progress has been made by local clinicians working with
local managers and IT staff and focussing on their own local priorities.
29. Whatever adjustments are made to current
policy these should be made in relation to the most urgent service
priorities for better use of IT. These include:
— Rapid deployment of functional clinical
systems into secondary care.
— Rapid deployment of functional clinical
systems to support community staff.
— Rapid deployment of functional clinical
systems to support the work of the many multi site clinical networks
(eg cancer networks) that are providing care on a collaborative
basis to some of the sickest patients in the service.
— An urgent review of the most effective
way of accelerating the capture and availability to all health
professionals of clinical information about individuals that is
spreading over an increasingly wide range of public and private
sector providers.
Frank G Burns
Independent Healthcare Consultant
March 2007
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