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.
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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.
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.
“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.
“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:
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.
“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.”
“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.
“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.
“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.
“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.
“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.