On Mon, 2005-02-07 at 13:43, Dr Jeremy Rogers wrote:
> inter alia, discusses the question of how triallists should act if
> they choose to feed some or all of the test results back to the trial
> participants.
I don't think that you actually have a choice nowadays (although I can
see that some trial results would not be interesting to participants in
their raw form). FOIA etc opens it all up. And good.
> "Information on intentions to feed-back findings should specify which
> test results and findings about themselves will be sent to
> participants, and if necessary recommend interpretation of findings by
> their gp.
That is a GMC requirement is it not, and one of the source of power
that GPs have - that relevant stuff must be communicated by any doctor
to the patient's GP unless there is a v good reason not to. (eg boring,
pointless, very unusual privacy requirement etc).
And if the patient turns out to be ill, then I can't see any of us
regarding it as extra-contractual to discuss it with them (reason 1
being because it isn't, even if what we do is refer instantly).
My feeling though is that it is rarely necessary to tell the patient to
discuss it with us - if they want/need to they will. If they don't
decide to then nudging themn will rarely be useful.
(Citizens are quite good at deciding what they need to talk about)
> It should also specify where study findings will be published. It is
> good practice for a long-term study to have a website that provides
> abstracts and and refreences to publications and talks."
Rather more than that for us. Make all information available to us with
pointers to where the meaning of whatever is being shared is. Most
times we won't follow them.
--
Adrian Midgley Open wide
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