Will we need to take lawyers/advocates along to consultations in future?
There have been so many twists in the tale regarding the setting up
of Electronic Systems in the UK that citizens can hardly put their trust
in their information being handled competently or even that they will be
properly informed in the first place. Few practices have informed people
who use them, many healthworkers themselves are unaware or confused by the
proposal, which changes by the week. There have been so many reversals of
statements made regarding people's right to state how they wish their
information to be handled - opt in or opt out? sealed envelopes to
secrete information is one bizarre twist. It seems to be becoming more
clear that there will be attempts to manipulate or even coerce citizens
into sharing information by making the process as difficult as possible
for the individual to make personal decisions about important areas of
their lives - to decide to withhold information or not.
the NPflT's Caldicott Guardian stated in a letter to a GP Mark
McCartney (e-health Insider) that:-
'The right of a patient to opt out of having information stored about them
within the NHS CRS was covered by the Data Protection Act'.
'The right is separate to mechanisms by which people can request
their details are held on the data base not available to health
professionals other than their doctor. This permits a patient who feels
they are suffering or may in future suffer significant damage or distress
to ask for the processing of data to cease, including the holding of
data'.
'The process by which a person may demonstrate that the required
level of damage or distress is still being considered but will need to be
in place prior to NCR's going live with clinical details included'.
Why should any citizen be put through this nonsense and especially
when the system is being piloted already in some parts of the country,
despite the above statement.The first paragraph is full of weasel words
which can be interpreted differently by different healthworkers -as so
often shown by BMJ rr's - with different values and attitudes, variable
training and life experience, eg 'can request'; 'permits'; 'feels they are
suffering...'; 'significant distress'; 'other than their doctor'. The
next is full of paternalistic and arrogant statement which may allow or
not, adults to make decisions about their lives. More people are likely to
opt out of a system which treats them without genuine respect.
Other statements have proposed that citizens will not understand that
opting out of sharing all information may lead to inferior care. Again
this infantalising attitude does nothing to support the supposed
partnership approach to healthcare promoted elsewhere by the DoH.
Once people begin to realise how they are being treated with regard
to their rights to confidentiality in the NHS they are less likely to
decide to disclose personal information to a healthworker in any case.
Paradoxically at a time when more and more sensitive information is being
requested in the push for healthworkers to monitor more aspects of private
lives, citizens' rights to privacy and confidentiality and to disclose
their information to a named person they have chosen to trust, are being
eroded.
In order to negotiate the services people are paying for in the UK,
citizens will soon need to take an advocate or lawyer to consultations. We
already need knowledge of the DPA; Rights to Privacy re Common Law and
Human Rights ACt; who a Caldicott Guardian may be; what a 'sealed
envelope in the NHS means; GMC and and other regulatory guidelines.
How the Sharing of Records as proposed is supposed to fit without
breaching these is a mystery.
Rapid Response:
Will we need to take lawyers/advocates along to consultations in future?
There have been so many twists in the tale regarding the setting up of Electronic Systems in the UK that citizens can hardly put their trust in their information being handled competently or even that they will be properly informed in the first place. Few practices have informed people who use them, many healthworkers themselves are unaware or confused by the proposal, which changes by the week. There have been so many reversals of statements made regarding people's right to state how they wish their information to be handled - opt in or opt out? sealed envelopes to secrete information is one bizarre twist. It seems to be becoming more clear that there will be attempts to manipulate or even coerce citizens into sharing information by making the process as difficult as possible for the individual to make personal decisions about important areas of their lives - to decide to withhold information or not.
the NPflT's Caldicott Guardian stated in a letter to a GP Mark McCartney (e-health Insider) that:- 'The right of a patient to opt out of having information stored about them within the NHS CRS was covered by the Data Protection Act'.
'The right is separate to mechanisms by which people can request their details are held on the data base not available to health professionals other than their doctor. This permits a patient who feels they are suffering or may in future suffer significant damage or distress to ask for the processing of data to cease, including the holding of data'.
'The process by which a person may demonstrate that the required level of damage or distress is still being considered but will need to be in place prior to NCR's going live with clinical details included'.
Why should any citizen be put through this nonsense and especially when the system is being piloted already in some parts of the country, despite the above statement.The first paragraph is full of weasel words which can be interpreted differently by different healthworkers -as so often shown by BMJ rr's - with different values and attitudes, variable training and life experience, eg 'can request'; 'permits'; 'feels they are suffering...'; 'significant distress'; 'other than their doctor'. The next is full of paternalistic and arrogant statement which may allow or not, adults to make decisions about their lives. More people are likely to opt out of a system which treats them without genuine respect.
Other statements have proposed that citizens will not understand that opting out of sharing all information may lead to inferior care. Again this infantalising attitude does nothing to support the supposed partnership approach to healthcare promoted elsewhere by the DoH.
Once people begin to realise how they are being treated with regard to their rights to confidentiality in the NHS they are less likely to decide to disclose personal information to a healthworker in any case. Paradoxically at a time when more and more sensitive information is being requested in the push for healthworkers to monitor more aspects of private lives, citizens' rights to privacy and confidentiality and to disclose their information to a named person they have chosen to trust, are being eroded.
In order to negotiate the services people are paying for in the UK, citizens will soon need to take an advocate or lawyer to consultations. We already need knowledge of the DPA; Rights to Privacy re Common Law and Human Rights ACt; who a Caldicott Guardian may be; what a 'sealed envelope in the NHS means; GMC and and other regulatory guidelines. How the Sharing of Records as proposed is supposed to fit without breaching these is a mystery.
Competing interests: None declared
Competing interests: No competing interests