Select Committee on Health Written Evidence

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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