Implicit in the consultation are assumptions about the level of trust in the security of medical records used to select patients to approach to participate in research and in adequacy of the anonymisation routines for the records of those selected . Unfortunately those assumptions are not shared by many information security prodessionals. The consequence may therefore be a backlash against making data available for research other than under repeated explicit consent.
That would be most unfortunate, given that most patients are happy to participate in research, provided asked by some-one they trust and told something about the programme.
The need is for a change of approach towards informed and graded consenet with patient records flagged according to the consent they have given, from -
- I am a trusting hypochondriac - put me down for every programme going
through
- I consent to programmes on anything except X, Y and Z
and
- usually willing and happy to be contacted direct
to
- only if Doctor Smith says its all right
and
- never under any circumstances
The technology makes such an approach as easy to administer as the "ethical" monitoring hierarchy envisaged in the consultation.
The obstacle is the cultural leap from:
"We know best, we only go through the motions of consulation because we have to"
to
"We want the willing involvement and support of those we are seeking to help" - and a tear-off donation slip for The XYZ Research Foundation attached to the consent form.
Once again, we appear to be about consultation in theory while automating kafka-esque bureacracies in practice.
The transformation of public service delivery will not gather pace until the hearts and minds of middle management have been won. You may have read the lists of books supposedly read by leading politicains over the summer. I read "Rebellions and Revolutions: China from the 1800s to 2000."
One of the lessons was how often rushed attempts at target driven reform led to "the heartless imposition of humane policies" and the opposite of what was intended.
This is an important consultation and even if you think the questions are flawed, it contains the comment spaces to make your views known. And you should - both as inisdviduals and collectively via your professional bodies.
