Evidence submitted by Robin Guenier (EPR
23)
Guenier is an independent consultant and chairman
of the medical online research company, Medix UK plc. In 1996,
he was Chief Executive of the Central Computing and Telecommunications
Agency reporting to the Cabinet Office. He is a Liveryman of the
Information Technologists Company (a City livery company) and
is chair of its medicine and health panel. He has written this
note in his private capacity, in no way is it intended to represent
the views of Medix or of the ITC.
EXECUTIVE SUMMARY
This evidence is based on findings of surveys
of doctors' views of the NHS National Programme for IT (NPfIT)
conducted by Medix UK plc. It indicates, in particular, that most
doctors are worried about the confidentiality of electronic patient
clinical records on the national database. A majority, however,
recognises the benefits of such a record with many saying that
some additional risk to confidentiality is therefore acceptable.
But about 50% say that they will not or are unlikely to upload
clinical details to the database unless a patient has given specific
consent. Doctors' main concerns are that hackers and public officials
from outside health or social care might access the records.
Unless these concerns are overcome, the successful
implementation of the electronic patient record seems likely to
be in doubt. Keys to progress, both for NPfIT as a whole and for
the electronic record, are (a) considerably better engagement
with all users and especially with clinicians and (b) substantial
improvement in doctors' confidence regarding the project's implementation.
Neither will be easy.
1. INTRODUCTION
1.1 This evidence is concerned mainly with
doctors' views, in particular, about the data privacy and confidentiality
issues associated with the electronic record systems to be introduced
under NPfIT and referred to in the inquiry's terms of reference.
(Throughout this document this is referred to as "CRS"
(the NHS Care Records Service)). It will also consider doctors'
views on the CRS concept as a whole, so as to contribute to the
Committee's review of its benefits and progress and why its introduction
is late. It will examine what conclusions can be drawn regarding
actions necessary to ensure that NPfIT, and hence CRS, is successfully
implemented.
1.2 This evidence is based mainly on surveys
of doctors' views conducted by Medix UK plc (Medix). There are
also references to surveys conducted by Nursix and by Ipsos MORI.
2. BACKGROUND
2.1 Medix UK plc has conducted seven major
surveys of doctors' views of NPfIT, starting from February 2003.
The most recent was carried out in November 2006 and is principally
referred to in this evidence. The full results are submitted to
the Committee as supplementary material.
2.2 The survey was commissioned by the British
Journal of Healthcare Computing and Information Management,
Computer Weekly, E-Health Insider, the Guardian
and GP and ran from 7 to 13 November 2006. The objective
was to investigate doctors' views about NPfIT and to consider
how those views had changed over three years. Respondents were
over 1% of the 90,000 or so doctors who practice in England and
are therefore affected by NPfIT. They covered a wide and well-balanced
range of specialties and, in terms of grade, commitment and decade
of qualification, were a good representation of practising doctors
on the GMC register (see the demographic details set out in Appendix
B to the survey results).[106]
That and the large sample achieved are strong indicators that
respondents represent the views of the wider population of doctors
affected by NPfIT.
2.3 Respondents were asked six questions
relevant to the main focus of the inquiry:
Q11a Are you aware of when you will be expected
to start uploading your patients' clinical details to the national
database as part of the Care Records Service (CRS)?
Q11b Do you agree that the advent of the Care
Records Service (CRS) is likely to mean that the confidentiality
of patients' records will be more secure than it is today?
Q11c Do you agree with the following statement:
"CRS will benefit patients by enabling clinicians to make
better decisions by having easy access to a complete, up-to-date
record of clinical information"?
Q11d If you agreed with the above statement
(Q11c), do you agree that some additional risk to patient confidentiality
would be acceptable?
Q11e What are your key concerns about the possible
impact of the Care Records Service on patient record confidentiality?
Q11f To safeguard confidentiality, the DH has
published a "Care Record Guarantee". In view of this,
are you prepared to upload a patient's clinical details to the
national database if that patient has not given their specific
consent?
3. THE CONFIDENTIALITY
OF PATIENT
RECORDS
3.1 Respondents were concerned about the
security of clinical records uploaded to the national database.
79% of GPs and 55% of non-GPs (largely hospital doctors) said
that the advent of CRS is likely to mean that confidentiality
will be less secure than it is today. Only 6% of GPs and 16% of
non-GPs thought it likely to be more secure.
3.2 This was the third time that Medix has
asked the question. Results from all surveys (January 2005, January
2006 and November 2006) indicate that doctors are becoming less
sure about confidentiality. GPs appear to be more concerned than
non-GPs. See Table 1.
Table 1
SUMMARY OF FINDINGS RE EFFECT OF CRS ON RECORD
CONFIDENTIALITY
| Effect of CRS on the confidentiality of patient records?
| | Q647
Jan 2005
| Q849
Jan 2006 | Q1066
Nov 2006
|
| GPs | Better | 6%
| 8% | 6% |
| Worse | 70%
| 71% | 79% |
| Non-GPs | Better | 18%
| 15% | 16% |
| Worse | 42%
| 46% | 55% |
| | |
| |
3.3 That a majority of doctors is increasingly concerned
about confidentiality could well prejudice the introduction of
CRS. That would have serious consequences for NPfIT as a whole
and may be relevant with regard to the third bullet point of the
inquiry's terms of reference.
3.4 However Medix's most recent survey went further than
earlier surveys. When asked if some additional risk to confidentiality
was acceptable in view of CRS's potential for patient benefit,
55% of the 65% of those respondents who thought there was such
benefit (i.e. 36% of all respondents) said either that there was
no such risk or that any such risk was acceptable. This indicates
that, in practice, some doctors might be willing to accept a lessening
of patient record confidentiality. See Tables 2 and 3.
Table 2
Q11c Do you agree with the following statement: "CRS
will benefit patients by enabling clinicians to make better decisions
by having easy access to a complete, up-to-date record of clinical
information"?
| GP | nonGP
|
| Strongly agree | 7 | 18
|
| Agree | 44% | 47
|
| Disagree | 21% | 14
|
| Strongly disagree | 8% |
5% |
| Unsure | 15% | 10%
|
| Insufficient information to comment | 5%
| 7% |
| | |
Table 3
Q11d If you agreed with the above statement (Q11c), do
you agree that some additional risk to patient confidentiality
would be acceptable?
| GP | nonGP
|
| I don't think there will be any additional risk
| 3% | 8% |
| Strongly agree | 3% | 4%
|
| Agree | 42% | 46%
|
| Disagree | 29% | 24%
|
| Strongly disagree | 12% |
8% |
| Unsure | 9% | 8%
|
| Insufficient information to comment | 2%
| 3% |
| | |
4. KEY CONCERNS
4.1 Respondents were asked what concerned them in particular.
See Table 4. The greatest concerns were outsiders hacking into
the system and access to the system by public officials from outside
health or social care. This latter finding may be of interest
to the Committee with regard to the second bullet point of the
inquiry's terms of reference.
Table 4
Q11e What are your key concerns about the possible impact
of the Care Records Service on patient record confidentiality?
(Select any three—unless first option selected)
| GP | nonGP
|
| I don't think CRS is likely to make patient records less secure
| 10% | 14% |
| Clinicians not adhering to the rules | 24%
| 22% |
| IT technicians not adhering to the rules |
21% | 17% |
| Social services staff not adhering to the rules
| 26% | 19% |
| Researchers not adhering to the rules | 16%
| 9% |
| Bribery or blackmail of people with access to the records
| 34% | 22% |
| Outsiders hacking into the system | 62%
| 56% |
| Inadequate access controls | 48%
| 42% |
| Access by public officials outside health or social care
| 62% | 51% |
| Unsure | 2% | 7%
|
| Insufficient information to comment | 5%
| 8% |
| Other | 4% | 2%
|
| | |
5. PATIENT CONSENT
5.1 Another important new finding was that 51% of GPs
and 47% of non-GPs said that they will not or are unlikely to
upload a patient's clinical details to the national database unless
that patient has given specific consent. Only 13% (GPs) and 18%
(non-GPs) said that they would or probably would upload such details
in these circumstances. See Table 5.
5.2 This finding may be of interest to the Committee
with regard to the first bullet point of the inquiry's terms of
reference. It is a significant finding and, together with the
finding about doctors' concerns about confidentiality (3 above),
underlines what could be a serious problem for delivery of CRS
and thereby of NPfIT.
Table 5
Q11f To safeguard confidentiality, the DH has published
a "Care Record Guarantee". In view of this, are you
prepared to upload a patient's clinical details to the national
database if that patient has not given their specific consent?
| GP | nonGP
|
| Yes | 5% | 5%
|
| Probably | 8% | 13%
|
| Unsure | 22% | 14%
|
| Unlikely | 13% | 13%
|
| No | 38% | 34%
|
| Insufficient information to comment | 13%
| 15% |
| | |
6. A WIDER VIEW
6.1 The survey found that, overall, doctors were positive
about NPfIT's potential for patient benefit. For example, 58%
of GPs and 69% of non-GPs believe it will improve clinical care
in the longer term (see also the Medix/Ipsos MORI comparison submitted
as supplementary evidence), although these figures are almost
halved when they were asked about the next year or two. This finding
reflects some comments by respondents to the survey (see Appendix
D to the survey results) that, despite any deficiencies or concerns,
the NPfIT concept is vital to the NHS.
6.2 CRS in particular is supported by a majority of doctors.
In its last six surveys, Medix has asked doctors whether they
regarded CRS as important and the majority said it was. However,
over the years that support has been declining: see Table 6.
Table 6
SUMMARY OF FINDINGS RE SUPPORT FOR CRS
| The Care Records Service is important or very important
| Q354
June 2003 | Q476
Feb 2004
| Q558
July 2004 | Q647
Jan 2005
| Q849
Jan 2006 | Q1066
Nov 2006
|
| GPs | 77% | 81%
| 79% | 59% | 59%
| 56% |
| Non-GPs | 83% | 82%
| 88% | 73% | 69%
| 69% |
| | |
| | | |
6.3 This reflects a much harsher deterioration in support
for NPfIT as a whole. Since its first survey, Medix has asked
doctors if they thought NPfIT was an important priority for the
NHS and if they thought it a good use of resources (not asked
in July 2004 and January 2005). Since its third survey, Medix
has asked doctors if they were enthusiastic about NPfIT. The findings
(see Table 7) indicate a serious decline in support.
Table 7
SUMMARY OF FINDINGS RE SUPPORT FOR NPfIT
| Q265
Feb 2003 |
Q354
June 2003 | Q476
Feb 2004
| Q558
July 2004 | Q647
Jan 2005
| Q849
Jan 2006 | Q1066
Nov 2006
|
NPfIT is an important priority for the NHS
GPs
| 67% | 66% | 70%
| 58% | 41% | 38%
| 35% |
| Non-GPs | 80% | 73%
| 80% | 73% | 68%
| 56% | 51% |
I am fairly/very enthusiastic about NPfIT
GPs
| 56% | 45% | 21%
| 26% | 25% | |
|
| Non-GPs | - | -
| 75% | 65% | 51%
| 45% | 41% |
NPfIT is a good use of NHS resources*
All doctors
| 47% | 43% | 31%
| - | - | 17% |
11% |
| | |
| | | |
|
* Results confirmed in surveys conducted by Ipsos MORI
for CfH—see the Medix/Ipsos MORI comparison submitted as
supplementary information.
6.4 The surveys do not determine why this deterioration
is happening. However one question, asked in January and November
2006, may be a pointer: when asked how they rated NPfIT's progress
so far, on both occasions only 1% of all respondents considered
it excellent or good and 8% satisfactory. In January 75% of GPs
and 63% of non-GPs rated it poor or unacceptable and, by November,
these figures had increased to 82% and 72%. These findings illustrate
sharply the immense challenge facing Connecting for Health in
persuading doctors that it is doing an competent job.
6.5 Another concern is poor consultation:
6.5.1 From the outset doctors have complained about their
not being engaged with NPfIT: see Table 8.
Table 8
SUMMARY OF FINDINGS RE CONSULTATION (ALL DOCTORS)
| | Q265
Feb
2003
| Q354
June
2003 | Q476
Feb
2004
| Q558
July
2004 | Q647
Jan
2005
| Q849
Jan
2006 | Q1066
Nov
2006
|
| How much consultation with you about NPfIT? |
Adequate | 2% | 2%
| 4% | 5% | 5% |
5% | 5% |
| Is consultation with you important? | Yes
| - | 85% | 88%
| 84% | 86% | 89%
| 92% |
| | |
| | | |
| |
6.5.2 An associated finding (Q1) is that, as recently
as November 2006, 50% of doctors had little or no information
about NPfIT (from any source), with 3% saying that the survey
was the first they had heard of it. These findings echo a Nursix
survey of 4,451 nurses conducted by Medix in June 2006 that found
that 65% of respondents had either inadequate or no information
about CRS.
6.5.3 Also relevant is a survey of doctors conducted by Ipsos
MORI for NHS Connecting for Health in February 2006 and published
in June which found that 68% of respondents had little or no information
about NPfIT, 11% saying they had "no information at all".
(A table showing the similarity of key Medix and CfH's Ipsos MORI
findings is submitted as supplementary information.)
7. DEVELOPMENT AND
DELIVERY
7.1 The Medix survey casts light on the matters referred
to in the fifth bullet point: when asked (Q11a) if they were aware
when they would be uploading patients' clinical details to a national
database, a big majority was unsure or didn't know. See Table
9.
Table 9
Q11a Are you aware of when you will be expected to
start uploading your patients' clinical details to the national
database as part of the Care Records Service (CRS)?
| GP | non GP
|
| I am already doing so | 4% |
1% |
| Fully aware | 4% | 3%
|
| Slightly aware | 8% | 9%
|
| Unaware | 64% | 63%
|
| Unsure | 12% | 12%
|
| Insufficient information to comment | 8%
| 7% |
| Not appropriate to me | 1% |
7% |
| | |
This finding confirms that the development of CRS has a long
way to go and contrasts with the then minister in the Department
of Health David Lammy's reply to a parliamentary question on 28
February 2003. He said that a target was that, by December 2005,
"All primary care trusts, and all NHS trusts (will be) actively
implementing elements of electronic patient records". The
suggestion in the Committee's terms of reference that the new
systems are "up to two years behind schedule" may prove
optimistic.
7.2 The fifth bullet point asks why CRS is late. An Office
of Government Commerce / National Audit Office "agreed list
of common causes of project failure" (see the Annex to the
recent NAO report "Delivering Successful IT-enabled Business
Change") had as its third cause (out of eight) "Lack
of effective engagement with stakeholders". At least so far
as clinicians are concerned, that would appear to be a major obstacle
to NPfIT and hence CRS success—see 6.5 above. Unfortunately,
most of the remaining seven causes on the OGC/NAO list also raise
serious doubts about the overall management of NPfIT.
8. CONCLUSION
These findings indicate, in particular, that a lot needs
to be done to regain clinicians' support for NPfIT and hence for
CRS. An immediate action must be detailed, genuine and widespread
consultation: if an electronic patient record, with its attendant
advantages, is to be introduced successfully, the above findings
make it clear that clinicians have to be consulted and involved.
The findings suggest also that doctors have to be persuaded that
NPfIT's implementation is sound. It seems likely that the commissioning
and publication of an independent review of NPfIT, as recently
recommended to the Committee by leading academics, could make
an important contribution to achieving that.
Consultation will be a huge (about 700,000 people would be
involved) and expensive task, made particularly difficult by being
started so long after the project was announced. Yet it should
not be a hopeless task: doctors and nurses have consistently said
that the objectives of NPfIT and particularly of CRS are worthwhile.
Until it is done, however, it's hard to see how doctors in particular
can be persuaded that serious and effective action is being taken
to protect the confidentiality of patient records under CRS (see
3, 4 and 5 above). And, until that is done, the overall development
and delivery of the service (fifth bullet point) seems likely
to be in jeopardy. Giving evidence at a Department of Works and
Pensions Select Committee hearing on 2 February 2004, Sir Peter
Gershon (then chief executive of the Office of Government Commerce)
said, "If the staff are not brought in to new ways of working,
new ways of delivering benefits to the population, however successful
the technology is the systems will not be successful." If
the NPfIT systems are not successful, questions of concern to
the Committee about the protection of patient data confidentiality
and the benefits of an electronic patient record could be irrelevant.
Robin Guenier
15 March 2007
106
The NHS Plan: A Plan for Investment A Plan for Reform; Department
of Health; 2000. Back
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