Select Committee on Health Written Evidence

Evidence submitted by Dr Sarah Dilks (EPR 10)


  1.  The development of local and national electronic health records opens up considerable challenges around patient confidentiality and ensuring genuine patient participation in care. These comments focus on the issues raised for mental health services.

  2.  These are personal comments based on my experience of working as a Consultant Clinical Psychologist with people experiencing psychosis within London community mental health services. They are informed by my experience of using an electronic patient record system within my NHS mental health foundation trust (a local system developed specifically for the trust).

  3.  I have concerns about the erosion of confidentiality with the use of an electronic record. A trust-wide or national electronic system opens up the possibility of wider access to a health record than is possible with a paper record, simply because of the ease of remote access. For instance, a Support Time Recovery worker working in a CMHT (community mental health team) need not necessarily know all the details of an individual's history of childhood sexual abuse disclosed to the team psychologist during therapy in order to support that individual patient in returning to education, although all this information could be contained in the same health record. It would therefore seem important to look at the IT strategies for "partitioning" sections of an electronic record so that these are only available to particular services or clinicians. Such a system would be likely to be complex to administer (eg coping with staff changes and patient movement between services); therefore the NHS would need to allocate resources to support such administration on an ongoing basis.

  4.  Within our trust patients are unable to opt out of the electronic system. It is unclear whether patients are clear currently about how widely information could potentially be shared within an electronic system, particularly a national one. So, for instance, would a patient want their diabetic nurse to be able to see details of their contact with mental health services? As it stands in my Trust an individual's electronic record can be accessed by A&E psychiatric liaison staff, acute psychiatric wards, CMHTs, Home Treatment Teams, Drug and Alcohol services: in short any part of the Trust's services. Of course, only those staff who are directly involved in an individual's care should access the electronic record but this is not necessarily a comfort to the individual patient who finds that their record has been accessed more widely than they expected. Informal feedback from patients indicates this is a concern; one patient remarked that she would not have discussed much of what she had (usefully) addressed in psychological therapy if she had been aware that ward staff could later look at this in her electronic record.

  5.  It can be an advantage in terms of continuity of care to have access to the same record across an individual trust (for instance if someone with serious mental health problems presents at A&E in a crisis but is already known to another part of the trust). However, as with a paper record, this still depends on the quality of information entered into the record.

  6.  Specifically in relation to the stigma associated with mental health problems it would seem important that patients can be assured that details of their contacts with mental health services are kept separate from their physical health record and also from the department of work and pensions.

  7.  In addition, I have specific concerns about the configuration of an electronic system within mental health services as regards supporting recovery focused and socially inclusive care as opposed to medically driven care. So an electronic record would need to be structured in such a way as to allow holistic assessment and treatment of an individual, taking into account their needs across the range of life domains and not reducing these to symptoms and diagnosis. There should be a range of outcome measures (covering measures of subjective psychological distress, social and occupational functioning and including those outcomes most valued by patients/carers) to monitor and evaluate the care provided. And the electronic record should allow activity monitoring of individual professional input within multidisciplinary services to track specific elements of a care package (eg an episode of NICE guidelines recommended CBT for psychosis provided by a psychologist within the overall care package delivered by a CMHT to someone with a diagnosis of schizophrenia). There also need to be adequate resources for the ongoing development of an electronic system and staff training as the health context evolves.

  8.  In addition, I have concerns about the impact of an electronic record on patient/carer participation in the care planning process. The practicalities of showing the electronic care plan or assessment documentation to patients/carers and inputting their contributions impede collaborative participation. While there may be technical solutions to this, eg portable laptops or PDAs, these bring their own difficulties (principally data security, resourcing and staff training).

  9.  Use of data for research is attractive for services but raises issues about confidentiality. Can patients really be expected to agree to any possible future research use of their records?

Dr Sarah Dilks

South London and Maudsley NHS Trust

March 2007

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