Evidence submitted by Dr Sarah Dilks (EPR
10)
SUMMARY
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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