[cc-education] CC and Clinical Recordings used for Academic Purposes
Rachel Ellaway
rachel.ellaway at ed.ac.uk
Fri Oct 21 07:10:51 EDT 2005
Dear All
I am currently leading a (fairly short-life) project in the UK
looking at the issues surrounding the sharing and use of clinical
recordings for non-clinical academic purposes (see
www.cherri.mvm.ed.ac.uk). Because of the clinical nature of the
recordings (such as photographs, videos, audio recordings, scans etc)
there are a number of additional issues/complications to those
normally encountered in sharing materials.
The key issue is the identifiability of individual patients:
individuals are often identifiable in these recordings and often in a
very personal or exposed way. This is bounded by both legal and
ethical considerations. There are legal requirements for informed
consent to be acquired before recordings are created and for what
happens to personal information thereafter. This takes different
forms in different jurisdictions; in Europe this is covered by
variants of data protection legislation (eg http://
www.informationcommissioner.gov.uk/eventual.aspx?id=34) while in the
US it is governed by HIPAA (Health Insurance Portability and
Accountability Act at http://www.hipaa.org/) and so on. There are
also ethical considerations that require consent rather than just
assent, for instance if the patient believes that the recording is a
condition of their treatment. Ownership/copyright is generally
(although not unilaterally) held by the physician or the clinic/
hospital in which the recording was made rather than by the patient
although the terms of consent absolutely inform how the recording can
be used.
So how does this relate to Creative Commons?
Currently there are no common frameworks for being able to acquire
and then subsequently share clinical recordings for academic
purposes. This means that reuse and exchange is highly problematic
and is often risky for all concerned. Effectively the same recordings
are being made again and again locally because of the huge perceived
problems associated with any alternative. An ideal solution would be
to have a variation of the (elegantly simple) CC licensing model.
However ...
Once granted CC licences currently appear to be in perpetuity, not
limited to select groups and not limited to single jurisdictions
while data protection and many other legal requirements do require
limitations of this kind. To apply the CC approach to the clinical
recordings problem would require (we think) a different license set,
probably limited to healthcare education/training, that encapsulated
the terms of consent in a common and simple framework. If possible we
would like this to happen under the CC banner as the principles would
still apply and a unified 'honest broker' is required to hold it
together.
I would very much like to get the community's thoughts on this matter
(in particular those actually working with clinical recordings in
this way) and discuss how we might move this forward
with thanks (and apologies for the longish posting)
Rachel Ellaway
e-Learning Manager
MVMLTS
The University of Edinburgh
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