There is a worrying lack of information about plans for NHSCRS (nee
ICRS). Doubtless there are good reasons why much of this information has
not been made available to general practice, the key stakeholder. Whilst
talks have started locally (in London) I do not think that this will
have much effect on the existing nationwide agenda. There is currently
much interesting debate on a number of lists.
Let's not limit our discussion to which particular clinical software
will be used in "the great plan" (pivotal issue though this is). If this
is the only agenda in our debate we run the risk of giving implicit
consent to the fundamental issue of the centralisation of patient
records. Already the "opt out" solution has been chosen over "opt in"
with regard to patient consent. I'm generally OK with a pragmatic
approach, but my concern is that nobody I have spoken to can tell me
what from what exactly will our patients will be opting out! I'm
interesting in finding out:
1) Exactly what data will be held on the spine?
Originally there was talk of this being a small subset of patient
records - effectively a summary. I have heard a number of different
acount, including that ALL patient records would be uploaded (no opt
out, like it or not) and that an as yet undefined subset of this record
would then be made available on-line (with an opt out if patients wish).
Now it is becoming clear that every communication between any healthcare
provider for any patient referral will also make up part of the spine.
Is this just administrative data? What about results of investigations?
What about clinical referrals - will the referral letters be part of the
spine? We must know the answers to these questions before we can agree
to anything. Yet, before the mechanism has even been defined or
discussed with the medical profession there have already been lobbies to
increase the number of organisations to whom the spine data will be
available.
2) How will doctors identify themselves electronically?
We will need a nationwide system using public key encryption. The
issuing of tokens, smart cards or whatever will need to be done within
HR in every healthcare organisation throughout the country. There will
need to be robust plans and policies locally and nationwide for
certification issuing, renewal and revocation. This is an undertaking of
Herculean proportions, without which patient data will not be safe.
Where are the detailed plans? What is the timescale?
3) How will access be allowed?
Who decides who has access to what? Suppose for a moment that we could
implement a form of strong authentication which could reliably identify
any one of the millions of employees in the NHS and other government
departments (ha ha!). Who will decide who gets access to what? How will
this be implemented and overseen and what safeguards will be in place?
4) What do our professional bodies think?
What to the BMA/GPC think about the underlying principles re security
and confidentiality in relation to NHSCRS? I would like to hear that
this has been debated by the BMA's medical ethics board - and know of
their conclusions. Are GPs happy with the principle of centralisation of
medical records? Are we all aware of the profound repercussions that
NHSCRS will have on the issue of confidentiality and the whole doctor
patient relationship? Have our professional bodies informed and
educated GPs about this issue - which few would argue is not of
fundamental importance to the future of our profession. Have they sought
the opinion of grass roots GPs? Have the patients been asked? The forced
implementation of policy driven from the top down tends not to work, and
as these seem to be the principles at work in NHSCRS there must be a
high likelihood of failure. Our professional bodies tell us that they
have learnt from recent experience about the importance of representing
our views, from the ground up. So when will we be asked?
General Practice will be the final common pathway for much of NHSCRS and
we do not have to accept the imposition of a "fait accompli". Given
consensus on the fundamentals and some good leadership we will
undoubtedly be able to exert a major influence on the outcome. We are
not pawns in a game beyond our control. We are the players.
Laurie Slater
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