I have watched this debate and am quite interested in some responses. I
am in the unfortunate position of being able to see this argument from
both sides. The medical profession (in this I include doctors, nurses,
pharmacists, physiotherapists, occupational therapy etc.) all do
research. Whether they should need to seek consent for this is seems to
be an issue for this group. My own personal feeling, is that it is very
sad to try and restrict health professional from gathering information
to treat patients on an evidence based basis. Much effort is placed
into looking retrospectively at types of drug combinations used, best
types of prosthesis etc. in order to try improve treatments for future
patients. There are ethics committees who pass individual requests to
do studies for certain types of treatment, and the patients are informed
up front and asked to take part. Those who do not wish do have their
wishes respected. It won't however stop professionals using the data
from those who don't take part and comparing to those who do, is this
unfair? Surely we need to see if there were any benefits?
The issue of consent - I would challenge anyone to come into the health
service and implement detailed consent processes. None of the computer
suppliers have an interest in making systems that would assist us (there
are so few companies that actually produce systems for health that you
cannot apply pressure by saying you will go elsewhere). Paper
casenotes are not designed for holding specific consent forms, and as we
move nearer to an electronic patient record, this will not be
developed. The health services best bet is for government to legislate,
sorry if this sounds contrary to patients right, but I cannot see any
harm for people working in the NHS to use data for the benefit of future
treatments.
The only aspect I do have a problem with is providing information to
bodies outside the NHS. We are required to do this from time to time.
This is so an outside body, who knows nothing of how the health service
works, can monitor us and then tell us where we can do better. The
information supplied is very detailed. Too detailed for my liking, but
I am powerless to stop it. Is this right?
It is very easy to say that we should allow others to audit the health
service and tell us where we are going wrong, but do you not think we
know this? Unfortunately health is a big political football, and when
non NHS people audit our uses of say, waiting list, they are not really
auditing them, only the subset the government want the public to know
about. The recent Sunday Times supplement into 'good' and 'bad'
hospitals is an excellent way to scare people who do not know how to
intepret information in health. How do you say if a doctor is good or
bad because he has a high death rate? How do you know if he operates on
people others wouldn't (for fear of upsetting their death rate stats)?.
I do apologise if I sound anti data protection. I am very definitely
not. I do however think that there should be some exclusions to the
consent process. Not all health professional treat data with respect,
and that too needs sorting. But not all about the health service is
bad, honestly. There are many people working very hard to try to treat
patients in a more appropriate way, improve the qualty of life, length
of life etc.
I look forward (?) to your responses.
Su Clarke
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