Evidence submitted by the NHS Alliance
Patients should have access to their
full primary care record.
The patient should retain control
of the data.
The personal health record should
be designed to enable patients to understand the contents and
thus form the basis for:
(b) shared decision-making;
(c) more involvement in their care and management;
(d) the ability to integrate often fragmented
Access to records should also be
seen as a way of improving the accuracy of the record.
We support the approach to confidentiality
and authentication taken by NHS Connecting for Health, although
we recognize inherent risks in the Spine design.
We support the current developments
towards a more cooperative approach with suppliers. This is likely
to build on existing energy and innovation, rather than stifle
1.1 The NHS Alliance understands that the
Health Select Committee seeks opinion on the current NHS Connecting
for Health (CfH) plans for the Electronic Patient Record (EPR).
We shall respond to those interests.
1.2 In addition, however, we should like
to draw the committee's attention to other approaches to the EPR,
particularly with regard to:
access to the record by patients
sharing the record between primary
and secondary care.
1.3 It has become clear that the original
vision of a unitary system designed from scratch has had to give
way to a more polyglot version where CfH works alongside existing
providers. This has enabled other solutions to common problems
and these need to be taken into account when considering the EPR
2. What patient information will be held
on the new Local and National Electronic Record Systems, including
whether patients may prevent their personal data being placed
2.1 NHS Alliance understands that CfH plans
for a Summary Care Record to be available in 2008. This will contain
the patient's problem list, allergies, immunisations and a medication
list. Censored from both the problem and medication lists will
be any mental health or sexual health information.
2.2 We feel that this is a significant step
forward in patient safety. To have this information available
wherever the patient presents to the NHS will make life easier
and safer for staff and the public.
2.3 However, the Alliance is concerned about
the limitations that this arrangement imposes. In particular,
eliminating sexual and mental health history means that it will
be difficult for clinicians to rely on the data they see: the
patient may be taking other drugs not listed. There may be other
conditions that need to be taken into account. This partial data
set may be more risky in some circumstances than no data at all.
2.4 We would recommend that:
the patient's full record is made
that the patient retains control
of the data (Chapter 1 Section 13 NHS Plan 200 "Each patient
will have a record... to which the patient will hold the key")
2.5 This is available through at least two
systems in the UK at the moment: the full primary care record
is under the patient's control and they can show it to clinicians
at will. In one system, because the record is available online,
it can be shown to a clinician by the patient wherever there is
access to a web-browser: in outpatients, in A+E or abroad. In
the other system, full record access is via card with a USB. Whatever
system is in use, sealed envelopes will be needed: patients can
place in these data that they do not want clinicians to see. These
are not available at the moment.
2.6 So far as patients preventing their
personal data being placed on the CfH Spine, we understand that
this has now been agreed in principle. It is also clear to the
NHS Alliance that, if a patient does insist on their data being
kept off the Spine, their health care is likely to suffer to some
extent, and the patient will need to understand that.
2.7 The Alliance also understands that,
in order for patients to be able to decide with their GPs whether
information should or should not go on the Spine, there will need
to be a conversation between the GP and the patient. The Alliance
is concerned that this will lead to an unacceptable workload for
GPs. If the process could be automated, this would make life easier
for all concerned. There are now systems that can make this possible.
3. Who will have access to locally and nationally
held information and under what circumstances?
3.1 Who will have
3.1.1 The NHS Alliance feels confident that
the current arrangements proposed by CfH are safe, on the whole.
That is, within the limitations of human error, patient data will
be held securely and that access will be offered only to those
who need it at the time they need it.
3.1.2 The limitations of human error include
the consequences of clinicians leaving their identity cards in
situ, enabling others to gain access inappropriately; clinicians
leaving computer screens on and unattended with their identity
cards in situ. This will have to be tackled by education and sanctions.
3.1.3 One possible source of inappropriate
access against which it is difficult to guard is organized crime.
The more centralized the storing of patient records, the more
of a prize for organized crimeand the more data could be
stolen at one time.
3.1.4 Again, the NHS Alliance would recommend
the patient's full record is made
that the patient retains control
of the data;
that patients have access to the
audit data trial and can see who has or has not accessed their
patients should also be informed
when their sealed evelopes have been opened. This is not planned
at present and is a SERIOUS omission; and
it is also possible that patients
could be alerted by e-mail when their record has been accessed.
This happens in systems in the USA.
In this way, the patient always knows who has
access and who does not.
3.1.5 The main disadvantage of this approach
is the difficulties posed by access when the patient is unconscious.
Those patients who know that unconsciousness is possible could
share their authentication details with someone close to them
to use in an emergency: proactive consent. For the unexpected
situation, the Spine arrangement would be the best.
3.1.6 Because there are advantages and disadvantages
to the various access systems available at the moment, the NHS
Alliance recommends that clinicians and patients be able to move
between the different systems to maximize benefit to the patient.
There should be an arrangement whereby the clinician can see both
the summary record through the Spine as well as working with the
patient to see their full GP record when needed. The advantage
of the latter is that there would be access to all electronic
investigation results, all scanned letters, all recent GP consultations.
3.2 Who will have access? Patients
Some of the comments below stem from experience
with alternative systems currently available that allow patients
access to their full GP record.
3.2.1 The NHS Alliance recommends that patients
should have access to their full GP record at will. There needs
to be safeguards in place in respect of complex issues such as
third party information, access to children's records by parents
and data that has been generated and entered into the record but
has not been processed by the responsible clinician. In addition,
research suggests that, although patients understand most of what
they read, it would be important that technical data is linked
with information for the patient.
3.2.2 Systems available now link raw data
in the record with information for the patient. For instance,
a problem title such as "asthma" can be linked with
accredited patient-centred information and health advice about
the topic. It can also be linked with patient-facing NICE guidelines,
national patient groups and also with decision aids which have
been shown to help patients make real choices in the management
of their care.
3.2.3 In addition, it is possible to link
the record with reminders for better care. For instance, if a
patient is overdue for a blood pressure check or smoking review,
they can be reminded when they look at their record.
3.2.4 Research suggests that the benefit
of full record access includes:
It enhances communication between
clinician and patient;
It increases the onus on the clinician
to tell the truth;
It increases patient satisfaction;
It enables patients to correct data
errors, the commonest ones being demographic data, but the errors
can also be about clinical process and outcomes;
Patients feel better informed and
almost always reassured, even when they read bad news;
Patients feel they understand about
70% of what they read;
It appears to improve compliance
and support health education messages, such as smoking quit rates;
It is likely to improve self-care.
3.2.5 In this way, access to their own full
health record can act, for the patient, as:
a stimulus and personal trainer to
a method of empowering patients to
take more part, if they choose, in shared decision-making; and
to coordinate often fragmented clinical
It is potentially a transformative technology.
3.3 Who will have access? Carers.
3.3.1 So long as the patient has given their
informed consent, people close to them can access their records
3.3.2 This offers significant benefits.
For instance, as has already been shown with current experience,
can coordinate fragmented care;
have a much clearer idea about what
is happening to the patient;
can inform the patient about their
can be more effective advocates;
can monitor progress from abroad;
can transform the quality of care
for patients in care homes and units for severely disabled.
3.3.2 Again, this benefit is significantly enhanced
if carers have access to the full record.
3.4 Access under what circumstances?
3.4.1 To maximize benefit, clinicians and
patients and their representatives should be able to have access
in a range of circumstances
3.4.2 Clinicians should be able to have
access both in the presence of the patient, conscious or unconscious.
In addition, it should be possible to have access, with the patient's
consent, to their record when the patient is not there, in some
circumstances. For instance anonymised, for research, information
governance and clinical governance and for checking data.
3.4.3 Patients should be able to see their
records in any circumstance. The simplest approach is online.
However, this does currently exclude a substantial minority of
people, particularly perhaps those who would benefit most from
access: those with long-term and/or co-morbid conditions, and
3.4.4 For this reason, the NHS Alliance
suggests that it may be important, for the next few years, to
enable access through other means, for instance through kiosks
in GP waiting rooms or in libraries or on portable storage devices,
with adequate facilities for confidentiality.
4. Whether patient confidentiality can be
4.1 As described above, and subject to the
caveats expressed above, the NHS Alliance feels that patient confidentiality
is well served by the current CfH programme. It also feels that
over zealous confidentiality can act against the patients' best
4.2 Authentication issues at this stage
still need clarification, but they will soon be finalised and
will be acceptable to the information commissioner and practical
4.3 Security of the record itself is also
well-protected by CfH systems, as the NHS Alliance understands
4.4 The other systems currently available
are in the same position.
5. How data held on the new systems can and
should be used for purposes other than the delivery of care
5.1 The NHS Alliance endorses the idea that
clinicians should be able to use the record for research. However,
the data must be anonymised and, if not, the patient must give
6. Current progress on the development of
the NHS Care Record Service and the National Data Spine and why
delivery of the new systems is up to two years behind schedule
6.1 The NHS Alliance feels that the CfH
will deliver what is needed in time but there have been unacceptable
delays. The current delays have caused problems in themselves
and have had a morale sapping effect on CfH and how it is perceived
6.2 We feel that the reasons for the delay
are multiple, including:
a dogged refusal for some time to
include existing providers who were and are offering good service
to the NHS;
persistence in a top-down approach
that failed to use existing expertise; and
inadequate clinician and public and
6.3 Most of these problems are slowly being
addressed. In our view, harnessing existing expertise and using
systems that we know work well and have the confidence of users
will be the most effective way forward, For instance, the system
that enables patient record access offers more functionality than
HealthSpace at a small fraction of the cost.
Dr Brian Fisher, GP
PPI Lead for the NHS Alliance
Lead for the Record Access Collaborative (funded
Co-director of PAERS, a company enabling patients
to see their electronic health record
15 March 2007