Information Technology Reference
In-Depth Information
compare and analyse cover many different areas and topics - all of them inno-
vative and promising in their own right. A substantial part of the research costs
involve the collection of large amounts of data. Given the size of the grant and
without further interference, a maximum of 2 or 3 proposals could be granted.
In order to allow more output for the same research budget, the funding organ-
isation decides to concentrate data collection within one research group and to
require them to undertake it in such a way that several other groups who sub-
mitted good proposals can use the same data. It means that one group will need
more money, but others substantially less, with the positive effect that between 8
and 10 proposals could be granted! The funding organisation starts an inventory
of what is required in such a collaborative set up, based on the sharing of data.
Enthusiastic about this idea, the Funding Organisation decides to require any
data collection under this call to be stored and preserved properly so that also
in the future the data can be accessed and re-used for new initiatives.
SCENARIO
: privacy aspects
A research group is about to publish a study in the well regarded journal
Science&Nature. The study has analysed and compared the data of the first
5 years of 6 million EMR's (electronic medical records) and drawn shocking
conclusions about:
•
Indications for many untreated chronic diseases in early stages;
•
Incorrect diagnoses in more than 20% of cases by 60% of general practition-
ers;
•
Prescription of wrong medicines in 32% of cases where medicines were
prescribed.
The journal Science&Nature requires since early 2008 that any research of
which the conclusions are based on datasets, make these datasets available for
peer review but also for those willing to dig into it. But in this case there is a
serious problem with privacy aspects as many data are retrace-able to individ-
ual patients. There is also the ethical aspect to the study: the indications for
early chronic diseases: should the patients to which this applies be informed
or not?
The journal Science&Nature is prepared to limit the requirement for availability
of data to the peer reviewers only who shall look at the datasets only from the
point of the way the data was gathered and analysed - without entering spe-
cific EMR's. With reference to their normal preconditions that data can only be
made available to readers if no security, privacy, or other commercial or ethical
aspects are in the way, the journal shall drop its requirement to make the data
available.
