On 21 July, the Department of Health took the
extraordinary step of posting on its website three letters that
were addressed to Computer Weekly and were critical of our coverage
of a health IT conference at the NEC in Birmingham.
The department published the letters twice: on the websites of
its Information Policy Unit and its Information Authority.
Such a decision by a government department, to publish a series
of independent letters to a magazine, before that magazine has had
an opportunity publish them, is unprecedented.
The conference in Birmingham had been organised by the British
Computer Society’s Health Informatics Committee and Assist, the
Association for ICT Professionals in health and social care. Its
main purpose was to gather the opinions of delegates on a £2.3bn
national programme for IT in the health service, particularly on
the issue of electronic medical records, the official term for
which is Integrated Care Records Service (ICRS).
Richard Granger, director-general of NHS IT, had asked the BCS
and Assist for their views on aspects of an all-important sequence
of documents called the Output Based Specification [OBS].
Comprising about 600 pages, the OBS provided a specification for
companies that were bidding for contracts under the NHS’ national
programme for IT.
The three leading specialists in their field who have sent
strongly-worded letters by e-mail to complain about Computer
Weekly’s coverage of the conference were David Young, clinical
adviser to the Information Policy Unit at the Department of Health,
Glyn Hayes, a family GP and chairman, Health Informatics Committee
of the British Computer Society, and Marlene Winfield, head of
patient and citizen relations at the NHS Information Authority,
part of the Department of Health.
Before publishing the letters, which attack Computer Weekly’s
ethics and professionalism and one of which says we committed a
breach of trust, the department gave us no opportunity to respond.
We have published this week a detailed
explanation for our coverage of the conference in which
we set out the rationale behind Computer Weekly’s NHS campaign. We
also publish the
three critical letters from Young, Hayes and Winfield, together
with
other letters from delegates at the conference who support our
coverage.
In addition, we give a point by point response to the critical
letter from Glyn Hayes.
In general
The following is written to explain the differing agendas at the
BCS/Assist conference of the British Computer Society’s Health
Informatics Committee and Computer Weekly.
Glyn Hayes is a much respected member of the health informatics
community and is also a GP. He is admired by his peers as much for
his profound understanding of the issues relating to the Department
of Health’s National Programme for IT, as for his sincere
commitment to ensuring that the programme is a success.
Assist, the BCS and the members of the BCS’ Health Informatics
Committees are held in high regard by Richard Granger,
director-general of IT in the NHS. For this reason he asked the BCS
and Assist to provide him with feedback on the NHS’ national
programme for IT, an initiative that will involve at least an extra
£2.3bn being spent in the NHS on IT over three years.
The conference at which the views of members were collated was the
More Radical Steps think-tank at the NEC in Birmingham. We note
that a number of delegates at the conference were keen to express
constructive criticism and positive views about the programme to
Granger. It is also clear from records of the talks and workshops
reported on Computer Weekly, there were many comments similar to
those of the following three delegates who spoke at one of the
event’s workshops:
- “Just saying to Richard Granger it [the national programme for
IT] is not a good idea will get nowhere.”
- “This is a once-in-a-generation opportunity. This amount of
money [an extra £2.3bn for health service IT] will not come our way
again.”
- “Can I just break in here because I am sick to death of
listening to all this doom and gloom? It is very easy to talk
yourself into a situation where nothing works and even if it did
work you would not recognise it. If this group of all groups cannot
take a positive view of the national IT programme - we all have a
deep interest in the outcome - there is no hope for the programme.
We ought to take a much more positive view.”
At the end of the conference it was clearly reiterated that the
main purpose of the day was to provide constructive comments to
Granger.
Computer Weekly was covering the conference for a different
purpose, however. This was to make readers in the NHS and in the
wider IT community aware of some of the major issues that were of
concern to delegates at the conference.
Records of the comments made at the talks and workshops show
that there were a large number of specific comments that were
negative about aspects of the programme and relatively few specific
comments that were positive.
Even so delegates strongly supported the aims of the national
programme for IT, and also expressed support for Granger’s
appointment. Many had a great deal of respect for him
personally.
Our coverage reflects the tenor and substance of the concerns
expressed at the conference, although we admit that in our
conference reports we had room to highlight only a few of the
specific issues and concerns over aspects of the national programme
for IT.
Our response to the specific criticisms by
Hayes
“The British Computer Society’s Health Informatics Committee
is extremely concerned at the cheap headline grabbing nature of the
reporting in this week’s Computer Weekly of the discussions that
took place at our recent meeting.”
Computer Weekly denies the implication that either the headlines
relating to coverage of the BCS/Assist event, or the reporting of
the conference, in any way exaggerated the genuine concerns
expressed by delegates about aspects of the Department of Health’s
national programme for IT.
If anything our coverage underplayed the concerns of delegates.
Later in this response we highlight some of the many concerns of
delegates that were omitted from our coverage of the
conference.
Hayes writes:
“This meeting was a scientific contribution to the
development of the National Programme for IT in the NHS and as such
had a balanced and constructive series of workshops which were
aimed to assist in the successful implementation of the programme.
Your reporting and in particular your headlines only concentrated
on one side of what took place.”
It is entirely accepted that the conference was a scientific
contribution to the development of the national programme for IT in
the NHS and had a balanced and constructive series of workshops
which were aimed at assisting the successful implementation of the
programme. We do not accept that our coverage concentrated on only
one side of what took place.
Records of the event kept by our reporter show that most
comments made by delegates at the workshops and talks attended by
our reporter were, as explained above, constructive but largely
critical in tone and substance. After all, the main purpose of the
conference was not necessarily to tell Granger what delegates felt
were the successful components of the national programme. It was
inevitable, therefore, that coverage of the conference would focus
on the particular concerns of delegates.
To balance this, however, Computer Weekly published a summary of
the views of the BCS’ Health Informatics Committee. The article
with the headline “Ground rules for NHS IT success” set out a
series of points that the conference felt Granger needed to
consider and ended with a comment from the BCS saying that the
national programme for IT, if appropriately developed, would
“fundamentally improve patient care in the NHS”. Furthermore,
Computer Weekly published another article that had the comments of
an adviser to the Department of Health who was urging delegates to
take a positive view of the national programme.
The comment by Hayes that Computer Weekly focused on one side of
the story needs to be evaluated in the context of what is said
above.
Hayes writes:
“My comments about the possibilities for problems around the
confidentiality requirements of the new systems were designed to
explore in a reasoned fashion, how clinical staff might work. The
debate which took place following these comments produces a very
different viewpoint than that reported. Thus my comments were taken
out of context and have been used to raise unfounded anxieties
amongst NHS staff and patients.”
The comments made by Hayes, as reported by Computer Weekly,
related to IT security and implementation issues and to plans for
doctors to obtain the consent of patients to a summary of their
health records being uploaded to a national data spine. The
Department of Health’s Output Based Specification sets out in more
than 60 pages the complex issues around patient consent.
Computer Weekly reported the concerns of delegates at the
conference that clinicians would spend less time with patients if
they had to discuss with them whether their data should go into the
spine or not, and the possible implications for their care if they
refused consent.
Hayes told the conference, “My concern is that by implementing
such an extensive, comprehensive and rigid IT system we will stop
the system working.” He had added that there was evidence of this
happening in Alberta, Canada, when legislation was passed to
control the confidentiality of new electronic records on patients.
The Canadian legislation mirrored much of the Department of
Health’s current plans.
Hayes said, “In Canada after 18 months the Act was withdrawn
because it was found that 30% fewer patients were being seen by
clinicians who were spending so much time trying to meet the
privacy, confidentiality, security and implementation issues.” He
had also said that the Canadian legislation mirrored much of the
department’s current plans.
Hayes was not the only person at the conference to express
concerns that the requirements of national systems would take time
away from clinicians to deal with the care of patients.
Indeed at one point during a workshop, Computer Weekly asked the
audience whether the complex matters delegates were discussing
about obtaining the consent of patients and the need for doctors to
meet requirements of new national systems would impact on the time
they spent with patients. Those who expressed a view in the
audience agreed unanimously that doctors would end up with less
time to talk to patients about their problems.
The following comment from a speaker was omitted from Computer
Weekly’s coverage of the conference:
“I think you [a delegate who was explaining some of the rules on
gaining the consent of patients] are vastly underestimating the
amount of work involved. When you put this into every part of the
health service that’s going to mean that you have less time for
patient care.”
In a letter to Computer Weekly, published this week, Dr Paul
Steventon, a GP and a delegate at the BCS conference, said Computer
Weekly had accurately reported on the conference, and he expressed
concerns similar to those of others at the conference. “The level
and type of security needed to control a nationwide clinical
database poses practical problems for the clinician. The complex
protocols prescribed will force doctors and nurses to spend an
unknown amount of time, some minutes probably, in every (average 10
minute) consultation dealing with security. Before that they will
of course need hours of training simply to understand the
procedures!” Steventon wrote.
“I confidently predict that many non-computer literate NHS
employees from nurses to consultants will never accurately grasp
the detail of the proposed security protocols. The effect on the
NHS will be a significant degradation of efficiency in an already
tottering system.
“Doctors and nurses are already very short of time to care for
their patients, and are grossly overburdened with paperwork. (An
average GP today spends only 20 hours of his 60-hour week seeing
patients, the rest on bureaucracy). GPs have learned to safely cut
corners in each patient consultation, in order to achieve the
government’s goal of comprehensive patient care free at the point
of delivery for all UK citizens,” Steventon continued.
“Offered the choice between spending these precious minutes
giving essential patient care or fulfilling complex security
protocols on a government owned computer for dubious reasons, it is
likely that the majority will choose to look after the patient.
“If the government forces the issue by withholding pay from
those who do not comply, the efficiency of GPs in the NHS will at
once reduce by about 30%, as it did recently in Canada under
similar circumstances,” Steventon wrote.
Computer Weekly does not accept, therefore, that the comments of
Hayes were taken out of context and have been used to raise
unfounded anxieties amongst NHS staff and patients. It is noted
that Hayes does not point out any inaccuracy in any of the comments
that, with his agreement, were attributed to him.
Hayes writes:
“I raised the possibility that it would take staff time to
cope with these confidentiality constraints and the discussion
agreed that this was why the national programme had decreed they
needed a phased implementation. The only proposal which thus arose
was the need to evaluate these phases at each stage during the
five-year implementation to ascertain whether they do cause
problems and modify them in the light of experience. This phasing
and evaluation are not mentioned, yet they are a fundamental
point.”
None of the above is in dispute. They are valid points, well
made. They do not support the original contention that our articles
were of a cheap headline grabbing nature. Hayes goes on to
state:
“It was pointed out very strongly at the meeting that
effective and rigorous confidentiality constraints are an essential
requirement if we are to keep patient confidence. No one objected
to the need to share patient data if we are to use IT systems to
improve patent care.”
None of these broad principles is in dispute. Our articles did
not argue for or against effective and rigorous confidentiality
constraints or whether they were an essential requirement if we
were to keep patient confidence, or whether anyone objected to the
need to share patient data if we were to use IT systems to improve
patent care. We did not take a view on these issues; we reported on
the more specific concerns expressed by delegates.
Our articles highlighted the concerns of delegates that patient
data would be uploaded to national systems whether patients
consented or not. Many views were expressed on this point. Indeed,
during one workshop, delegates in the audience were asked whether
they objected to patient data going to the national database
without the consent of patients and several said “yes”. The
following were comments from different delegates:
- “I don’t think it [the patient record] should be there or
available in the system without the consent of the patient.”
- “Although we are not identifying the patient, I still think
there is an issue about putting that level of information up there
because obviously if the patient is diabetic he may not want the
rest of the world to know he is. Frankly he is going to get counted
whether he likes it or not. Now the government may say that it is a
great idea because it’s joined-up government but as a GP I feel
very uneasy about it and I think patients will too. I cannot see
how patients will feel good if their information is on the spine by
default and only removed if they say so.”
- “There needs to be a discussion among the public about their
data going to the [data] spine. If you don’t, this could be a huge
stumbling block.”
Hayes writes:
“Patients themselves find it ridiculous in this modern age
that their records are not available to those who care for them
wherever they are within the NHS. The idea that ‘doctors would
boycott such systems’ was not raised at the meeting and is
inaccurate.”
We agree with the first of the above statements and dispute the
second. We did not say in definitive terms that doctors would
boycott the systems. The article said in fact that doctors told
colleagues at the conference that they would rather boycott systems
than damage the quality of care [to patients]. We are disappointed
at the inference that the reporter only imagined something to have
been said at the conference.
In support of the "boycott" statement, we point to the comments
of a number of delegates:
- “I cannot imagine how I am going to stand up in front of my 14
computer-illiterate partners and present even 10% of this [OBS
requirements on dealing with patient consent] in a way that will
stick in their heads. It is going to be a real struggle and frankly
when it comes to it, none of them is going to do it because until
someone gets punished they will ignore it completely. It requires a
new mindset that is currently foreign to most of the GPs in general
practice.
- “If I ask one of my partners how he is going to cope with that
risk [on confidential data on patients being transferred to a
national system] he is going to say: ‘I don’t want to trust my
[patient’s] data on such a system full stop. If a patient does not
want their data on the spine, they do not have to have their
[identifiable] data put on. If it makes someone’s job easier to do
that, it will be implemented nationwide. This is about how to get
through a very hard working day with a minimum of hassle for these
clinicians. They are going to have to be persuaded very hard that
all this extra work is relevant to what they do. I can see some
real issues just in persuading people.”
Indeed, in his letter to Computer Weekly, Dr Paul Steventon
writes, “Offered the choice between spending these precious minutes
giving essential patient care or fulfilling complex security
protocols on a government owned computer for dubious reasons, it is
likely that the majority will choose to look after the
patient.”
Rather than sensationalising or exaggerating points we did not
report most of the most negative discussions at the conference.
Delegates themselves observed on several occasions during one of
the workshops that they were being too negative.
The following comment was omitted from our coverage of the
conference:
- “There are things about the national programme that scare me
rigid and I have only read less than a third of the OBS. But I want
to see the positive side because I think we have got to be
positive. I find this very difficult because in my heart of hearts
I agree with [another delegate] that there are profound technical
reasons why the technology will not deliver. My job is to bring on
board the enthusiasts but I am very concerned about the imposition
of nationally procured systems in an insensitive way. If you turn
off the enthusiast you will have a much harder job with the
rest”.
It is ironic that Computer Weekly stands accused of publishing
excessively negative reports on the conference when we in fact
reported so few of the actual concerns raised. We did not, for
example, cover the issue of “planning blight”.
A minister at the Department of Health, and a top civil servant,
had both announced that there was no “planning blight” by which
they meant that the department had not stopped or held up the
buying of local systems because of the national programme. In fact
a speaker at the conference produced a slide which said that action
should be taken to “avoid planning blight”. The speaker went on: “A
lot of anxiety was expressed last year and it is still a major
problem… There is a lot of inactivity that is waiting for the
national programme to kick in. It is still there (planning
blight).”
Other potentially major issues we omitted from our coverage
included assertions that:
- A key part of the national programme for IT, electronic booking
systems, was a politically-motivated initiative that could hit the
care of patients and disrupt the work of clinicians.
- Clinicians, concerned about what data may go into a national
system, may alter their decisions on what they include in
records.
- Large amounts of data put into national computer systems could
lead to “urgently requested pathology results not being looked at”
by doctors.
- Errors in the transcription of data onto computer could lead to
mistakes in the medical decision making process.
- There are “not enough people on the ground to do what is
required [regarding system implementation]”.
- The “one issue that has not been addressed and it is one of the
biggest problems we face in implementing a national IT programme is
that of getting the buy-in of clinicians. We still do not have
buy-in. Top management still do not recognise the importance of
IT.”
- There is uncertainty how education, awareness and training will
be handled. “I know that it is the responsibility of local service
providers,” said one delegate, “but do we really believe that they
can manage it?”
- The Department of Health, in devising aspects of the national
programme for IT, has little understanding of complex adaptive
systems. Said one speaker, “Complex adaptive systems are best
described by an analogy: if you have a brick and you throw it at a
certain degree of force, in a certain direction, at a certain
angle, you can anticipate where it is going to land. If you take a
pigeon and throw it with a certain force, in a certain direction at
a certain angle you have no idea where it is going to land because
a pigeon is a complex adaptive system. And the trouble is that
those who are trying to manage the health service from on high,
don’t really understand this. So they are tying the pigeon to a
brick and throwing them both together.”
- “Decision-support” requirements in the OBS could “stop us
[clinicians] working”. Said one speaker, “I can show you an awful
lot of investment that has gone into decision support and has been
wasted. Most of it came from the US. Although I believe that good
decision support makes a huge difference, the current OBS has too
much in it about rigid decision support systems that do not work in
my view.”
- “Unless all the systems work properly, and the propaganda works
properly, there could very easily be a national campaign to say:
‘Nobody consent to the spine’ and the whole programme could die at
that stage.
- “As we move towards greater sharing of data people will
gradually become more concerned. Over time we will see the 10% [of
patients who refuse consent for their data to be identified on the
spine] move to 25%.”
There were many similar negative points made at the conference
that we did not report. Even if we had had the space, it would have
been unfair to have recorded all such comments because the most
positive comments were not said because they were a given. For
example it was not necessary for delegates to praise the national
programme for IT for seeking to give clinicians ready access to an
up to date and reliable electronic health record for their
patients.
We are unaware of anyone in the IT industry who could dispute
the need for clinicians to have ready access to an up-to-date and
reliable electronic health record for their patients. The disputes
are about how such an objective should be achieved. The concerns we
did report reflected accurately the level of concern at the
conference.
Hayes wrote:
“I would also take issue with the comment that the proposals
are ‘secret’. Everyone at the meeting had had access to the report
and I commented in my opening speech that arrangements are in place
to make it public.”
At the time of the BCS/Assist conference, the proposals were
secret. They were contained in the OBS which, on every page – and
there are about 600 pages - was marked “Commercially in Confidence”
or “Restricted – Commercial”.
On 17 July 2003, as the Department of Health prepared to publish
the three letters which criticised us for describing the OBS as
secret, the department made the OBS openly available on its
website. At the time of our articles, however, it was secret.
We and other journalists had asked the department for a copy of
the OBS and our request was refused. Indeed the classification of
the OBS was strongly criticised by several delegates at the BCS
conference. One told a conference workshop, “The issue is that the
CIO [chief information officer] is not even allowed to share the
OBS with directors.”
It is not denied that the OBS was made available to the
delegates at the BCS/Assist conference but this did not make it a
public document. One delegate at the conference said, “Our CIO has
been told not to share the OBS. I picked up a copy of the OBS and I
said, ‘I have already shared it within people in my trust on a
confidential basis’. And I was told, ‘Do not share it’. I have come
to this conference and everyone is allowed to have a copy. The CIO
needs to be empowered to keep people informed.”
Since the Department of Health’s decision to publish on its
website the three critical letters to Computer Weekly from Hayes,
Young and Winfield, a number of correspondents have written to us
pointing out that the OBS was indeed a secret.
Hayes wrote:
“There is a basic inconsistency with two of your reports. On
the front page you state that the confidentiality requirements are
too strong and in a later report you say that there is danger in
patient data being held in the National Spine without patient
consent! It was quite clearly stated that patients will have to
give their consent before any data can be used by anyone for any
purpose.”
There is no inconsistency in an article in which delegates warn
against that the national systems having too rigid security that
could inhibit the adoption of new technology, and another article
warning against the dangers of a national system being vulnerable
to hacking.
These two concerns are not mutually exclusive. Doctors expressed
views at the conference about the possibility of hacking and the
dangers of having overly rigid procedures and IT security that
clinicians avoid using the systems.
With all computer systems there is a trade-off between security
and flexibility. You cannot have the highest levels of security and
at the same time the highest levels of flexibility. A system with
no security may be easy to use because it has no access controls.
Conversely a system with too much security may not be easy to use –
and may not be used at all – because there are too many access
controls. These views were aired at the conference and we reported
them accurately and fairly.
Hayes wrote:
“It is extremely worrying if experts in the field cannot
debate these very important issues without inaccurate and
unbalanced reporting.”
For the detailed reasons given above, it is denied that anything
we reported in the articles mentioned by Hayes were inaccurate or
unbalanced. Indeed no specific inaccuracies have been
mentioned.
Hayes wrote:
“All such reporting does is stifle the real debates we need
if we are to ensure that we are successful in realising the huge
benefits in care that IT can deliver. Widespread informed debate is
needed; ill-informed scaremongering is not.”
It will be seen from our detailed comments that there were many
negative issues highlighted at the conference that we omitted from
our coverage. What we did report encouraged open debate, as is
evidenced by the number of letters we have received, and the
Department of Health’s decision to publish the three critical
letters to Computer Weekly on its website, which has further
encouraged open debate.
Indeed we also note that the Department of Health posted the
whole of the OBS, still with its markings of “Commercial in
Confidence” or “Restricted – Commercial” on every page, two days
after our articles were published. For several weeks before 17 July
the department had received various requests to publish the OBS but
had declined to do so.