Evidence submitted by Patient Concern
1. Patient Concern is broadly supportive
of an electronic records scheme, which has many potential benefits
but we have serious reservations about the way current plans are
preceding. It seems that the push to get the system up and running,
after so many delays, means that the pilot scheme for summary
records is being launched before various important issues have
2. There is enormous confusion among patients
on opting out provisions, as a direct result of the mixed messages
put out by the various agencies involved. Patient Concern has
been corresponding with those most involved and we have been told
(a) that patients will be able to opt out
under section10 of the Data Protection Act; and
(b) that section10 of the Data Protection
Act is not the appropriate way to opt out as this would mean proving
that such a record would cause an individual substantial unwarranted
damage or distress.
We have also been told that:
(a) that GP practices are responsible for
the decision to enter records, so that patients should register
any objection with their doctor; and
(b) that requests by patients to the Department
of Health to opt out have been refused on the basis of inaccurate
informationeg that any professional would be able to see
their records. If patients' still wish to opt out, they must write
to the Department of Health again. Then their wishes will be respected.
3. Patient Concern considers that informed
consent is necessary before patients' confidential health information
is uploaded. The current proposals for pilot sites by no means
meet this requirement.
4. If patients are to make informed decisions
about records going on the spine, they must know exactly what
information is to be uploaded. It seems that in pilot areas, patients
will be notified of the scheme by post and if they do not make
any objections known within two months, their details will be
5. This is putting doctors, with their confidentiality
obligations, in an impossible position and flies in the face of
6. Imposing a time lag beyond which consent
will be assumed is quite inappropriate. There will doubtless be
people who, for one reason or another (eg extended business trip
abroad) will be unaware of what is happening or who do not take
action because they fail to appreciate the significance.
7. The Department of Health has stated that
it is impractical to obtain explicit consent from every patient
affected. If this is so, then perhaps it is impractical to begin
uploading records. What is possible in France and Greece should
be possible here.
8. Patient Concern would suggest that, as
the plan is to write to each patient in pilot areas informing
them of the scheme, a copy of the proposed upload of their data
should be sent, together with a tick box form giving or refusing
9. This should cover the problem, identified
by the task force, of vulnerable people being unlikely to take
advantage of an "opt in" scheme. With the information
clearly before them, they would be able to take advice from whichever
individual or agency normally assists them with medical decisions.
10. We are assured that "all data that
goes on the Summary Care Record will have to pass quality controls".
The time and place for quality controls is before any data is
entered, when patients can check accuracy, so every effort should
be made to ensure that all patients can do this, preventing mistakes
11. Any patient who has tried to correct
mistakes in existing health records knows that this is next to
impossible. The regulations are very strict and the best patients
can normally hope for is that their views are added to the record
if they dispute its contents. We appreciate the reasons behind
this but the patients trying to achieve accuracy find it thoroughly
unsatisfactory. The only way to prevent problems is to make sure
that no errors are uploaded in the first place.
12. Patients have, as yet, no clear idea
who will have access to their summary record. We are told that
access will be limited to "members of our health community"
but this does little to clarify the situation.
13. We understand that it is likely that
NHS Direct will have access. We consider it inappropriate that
those working on telephone help-lines, where the usual advice
is "go to your GP", should be able to view patients'
14. It is also reported that community pharmacists
wish to have access (and to be able to update the record). As
pharmacists' prescribing abilities expand, there may be some basis
for this. However, if patients in small communities, where the
pharmacist is known to them, were aware of such access, they might
prefer to opt out.
15. Smart cards for patients do not yet
exist. We are told that in time we shall be able to view our records
on Health Spacethough this will not be available throughout
the pilot areas this yearbut of course this will only be
possible after the fact. The record will already have been uploaded.
16. As the summary care record is limited
to medications, allergies and adverse reactions, the scope for
sensitive data is limited. Nonetheless, the listed medications
may reveal more than a patient wishes to disclose (eg HIV status
or mental illness).
17. The sealed envelope system that we were
promised is still at the planning and development stage. Meanwhile
we are told that patients can choose to have such sensitive areas
omitted. This begs the question of whether an incomplete record
is misleading or in some circumstanced harmful. Perhaps it would
be more responsible to advise such patients to opt out altogether
at this stage?
18. We leave IT experts to comment on the
detail of "the state of the art protection' offer, save to
say that patients are not convinced of the efficacy of the "stringent
19. Some 300,000 smart cards have been issued
to staff though none are promised for patients in the near future.
In late January, South Warwickshire General Hospitals NHS Trust
confirmed that its board had agreed that staff in A and E could
share smart cards. They claim that they are not breaking guidelines
laid out in the National Care Records Service Acceptable Use policy.
This has been followed by much comment revealing the common practice
of sharing smart cardswhich of course makes any genuine
audit trail impossible.
20. In addition, those who work in hospitals
remark on how frequently computers are left open, displaying supposedly
21. Patients need to be convinced that the
smart card system is fit for purpose.
22. All the publicity about summary records
has detracted from the many issues as yet undecided (or, if decided,
not revealed to patients). We argue that, without the answers
to certain questions, patients cannot properly decide whether
to allow records to be uploaded at this stage.
Will the complete opt out option
still be available when full records are uploaded at some unspecified
time in the future?
Which details will be uploaded automatically
and which will require consent? We have been told by the Department
of Health that "blood tests and Xrays will automatically
generate records within the system" and that when "care
is dependent on the use of these systems there can be no flexibility
for those who receive that care". Does this also apply to
referral and discharge letters?
Will historical data be included?
How will access to the full record
differ from access to the summary record?
23. Patient Concern gave oral evidence to
the Shipman Inquiry and to the Joint Select Committee of the Lords
and Commons on the Mental Capacity Act 2005.
We should be pleased to answer oral questions
from the Health Select Committee on this important subject.