Evidence submitted by Londonwide LMCs
(EPR 41)
Londonwide LMCs is the umbrella organisation
representing the 5,000 plus GPs in London. It is consortium of
24 individual Local Medical Committees (LMCs), each of which is
coterminous with the relevant local authority. LMCs are independent
professional organisations with statutory functions, elected,
inter alia, to represent GPs to Primary Care Trusts. They are
not trade unions.
Londonwide LMCs welcomes the opportunity to
submit evidence to the Health Select Committee inquiry into the
electronic patient record.
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 on new systems?
Londonwide LMCs believes the current hybrid
system of paper and electronic records is less than perfect and
appreciates the potential benefit greater sharing of information
could bring to patient care.
We firmly believe that patients should decide,
in discussion with their GP, the extent to which their clinical
information is placed on a national electronic system. We also
believe patients should have the opportunity to check their records
before the initial upload. GPs will have a crucial role in enabling
their patients to fully understand the implications of sharing
and withholding information.
We support the BMA policy that explicit consent
must be obtained before any information is uploaded on to the
system. The doctor-patient relationship is the cornerstone of
general practice and if that relationship is to be maintained,GPs
and their staff must be able to reassure patients that their medical
records will not be shared beyond the practice without their consent.
If patients cannot receive this assurance they may decide to withhold
information which could adversely affect practices' ability to
provide proper care and put patient safety at risk.
The above comments apply equally to summary
and detailed care records.
If it is accepted as necessary that patients'
demographic details should be held on a centralised system, Londonwide
LMCs would value greater clarity as to when and how, in certain
cases, patient demographics may be hidden or flagged as sensitive.
Who will have access to locally and nationally
held information and under what circumstances
Patients should have control over who has access
to their records and have the freedom to decide whether:
(i) No clinical information is uploaded onto
the national system;
(ii) Having a hidden summary care record
that can only be accessed with explicit consent or in an emergency
situation;
(iii) Having a summary care record that can
only be accessed by those directly involved in their care;
(iv) Sharing summary and detailed care records
nationally;
(v) Placing sensitive information in 'sealed
envelopes' to restrict sharing.
We believe that private providers should be
subject to the same access controls as NHS providers.
The doctor-patient relationship could suffer
if patients believe that government departments and agencies outside
the NHS could access their medical records. GPs will need to be
able to reassure patients that this cannot happen without their
explicit consent.
Whether patient confidentiality can be adequately
protected
At present, it is far from clear that patient
confidentiality can be adequately protected on a central system,
mainly because the more people have access to information, the
greater the risk of breaches of security.
We understand it is proposed that the security
of the system will be monitored by Caldicott Guardians and privacy
officers. They must be adequately trained and resourced for GPs
and their patients to have confidence they will be effective.
How data held on the new systems can and should
be used for purposes other than delivery of care, eg clinical
research
GPs will need to be able to clarify to their
patients who will be will be allowed access, particularly non-NHS
and commercial organisations.
Patients may wish to request that their medical
data is not used for secondary purposes, or to place limits on
the uses their information is put to and GPs must be in a position
to respond positively to such requests. Patients will need to
be confident their medical data will be kept secure, confidential
and properly anonymised.
Current progress on the development of the NHS
Care Records Service and the National Data Spine and why delivery
of the new system is up to two years behind schedule
It is clear that an initial reluctance to consult
clinical stakeholders, including GPs, or work with and integrate
existing systems, have contributed significantly to the delays.
Primary care IT systems are highly developed and effective but
little attempt was made to engage with GPs and build on these
existing systems. Recent developments, eg the move towards an
approved list of suppliers, are to be welcomed, but there remains
a need for greater transparency and openness.
The financial pressures upon PCTs are also a
contributory factor as spending on IT is unlikely to be a priority
for PCTs.
Londonwide LMCs
16 March 2007
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