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Sharing, preservation and licensing: Case study (continued)

The problem
Despite clinicians predicting that there would be sufficient existing data, once the study began it became apparent that this was not the case. As no data repository existed for this type of data, the student needed to contact researchers in other areas to see if they had additional data. This was time-consuming, with no guarantee that data would exist. One research group confirmed they had data available but this led to subsequent difficulties:

  • Need to explore the ethical implications of sharing clinical data
  • Need to negotiate the practicalities of who was allowed access to the data in order to transfer it to a suitable format to be shared (on other words, completely anonymised)
  • Need to explore issues of whether the data could be used for a purpose other than that of the original research
  • Need to explore issues around the secure transfer of clinical data as NHS and university guidance and practice differs
  • The time-scale of the student did not match that of the other organisation who were offering to share the data.

Result

In the end, because of the need to extract the data from a larger dataset in order to be anonymised, and because no resources were available within the other organisation to allow this to happen within the student's timescale, it was not possible to access and use the larger dataset. As a result the student project had to be revised.

Implications

  • Having access to a data repository that included anonymised clinical data would be extremely valuable.
  • The need to clarify ethical issues around sharing clinical data and to have clear guidance and agreements around this.
  • The need to clarify issues around transferring clinical data securely and to have clear guidelines and agreements around this.
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Creative Commons Licence
PILOT - Writing a data management plan by Edina, University of Edinburgh modified by Marion Kelt, GCU is licensed under a Creative Commons Attribution 4.0 International License. Based on a work at http://datalib.edina.ac.uk/mantra/introduction.html