Charities call for “public-researcher partnership” in sharing electronic patient dataBMJ 2009; 338 doi: https://doi.org/10.1136/bmj.b856 (Published 27 February 2009) Cite this as: BMJ 2009;338:b856
All rapid responses
I agree with Mark Walport that there is a risk that current trends in regulation will impede or even prevent important research which patients and their parents (I am a paediatrician) actually very much want to be done.
People who have, or whose children have experienced both acute and chronic illnesses usually enthusastically support (appropriately vetted, good quality) research and, indeed, often donate generously to the charities who in turn fund much of the best research done in the UK. If you ask them whether they want protection from the intrusion of their, or their child's records being screened for eligibility for a study, the stock response is: "don't be daft, get on with it!" It is neither ethical nor logical to fail to take the opinions of sufferers from disease into account when formulating policy on this and the partnership that Walport proposes could provide a means for these many voices to be heard.
The other reality check that is urgently needed relates to who clinical research staff working in the NHS actually are. If my unit is anything to go by (the NIHR South West Medicines for Children Local Research Network) the clinical research nurses who have the job of identifying suitable potential subjects for studies are, in general, recruited from - in some cases even on secondment from - the clinical teams who manage the children they are screening. They have contracts with the same NHS Trusts and are bound by the same codes of professional conduct as the staff delivering day-to-day care. To exclude them from routine access to a child's paper or electronic records makes no more sense than forbidding a nurse or doctor from the next door ward from doing the same thing and flies in the face of the spirit of professionalism, teamwork and cooperation that characterises the NHS and helps makes those of us who work for it cherish it so much.
I am a clinical researcher and work for the University of Bristol and University Hospitals Bristol NHS foundation Trust
Competing interests: No competing interests