Based on the literature review a questions-based model is derived. This questions-based model can be used for characterising the data-sharing activities in a project. It may be applied out-of-the-box for projects active in the healthcare domain, but it may also be applied in non-healthcare projects by adjusting it slightly. This is one direction regarding the future work on indicated how this questions-based model may be developed into a stable and mature generic model.
The literature research did not reveal a model or method on how a researcher can access healthcare data through data sharing. The model proposed by the author is the first of his kind. This model was validated by a panel of scientists on a number of dimensions, nevertheless it is a limited validation and not an academic validation. Certainly, there is space of improvement for this model.
Another limitation is related to the devil's quadrangle used to describe the data access types. The quadrangle's dimensions are proposed by the author and did not go through a validation process before using it.
Another limitation is that the data-sharing model might be tailored to Philips Research. In its current form, the model contains generic parts, i.e. the data access types and the project types, but also organisation specific parts, i.e. the internal data sharing and the internal approval process. However, in any organisation working with healthcare data, such specific parts should exist as well, since
these are required by the legislation (i.e. the IRB) or business practices (i.e. internal data sharing).
The validation sessions may be extended to include discussions with other experts that those involved in the first round of interviews during the orientation phase. This would eliminate a potential over-fitting of the model and increase the confidence of the validation results. In addition, by using a different experts cohort, the validation findings may be different than the current ones.
This is another line of future work.
Some of the improvement points were identified by the author, while others were pointed out during the validation sessions. All improvement ideas are presented in the following sections.
Internal data sharing
The fastest and cost effective mean for a researcher to reach and use data from the healthcare domain, is by reusing data already available within the company. As future work, it is interesting to research the reasons why data is not shared sufficiently internally and how can that be improved.
The use of dummy data
In some projects, due to the limited availability of real data, researchers create based on it, dummy data. This is used for testing of a limited scoped hypothesis. If successful, this grows towards an extended hypothesis. It is a question whether dummy data can still be used in this case. It is a question whether dummy data brings benefits when used on long term, as it might introduce bias into the hypothesis results.
Data storage
During the validation sessions, an expert suggested adding an extra dimension to the devil's quadrangle when defining the data access types, that is the data storage. Within the organisation data storage is one aspect that can be analysed for potential improvement, in the expert's opinion.
However, the first step is to raise the awareness of the researcher that uses the model also with respect to this dimension.
Analyse the Philips internal ICBE approval process
The internal ICBE approval process allows a project to use external data. This process may be further analysed for potential improvements, since this was not done given the limited time available of this thesis.
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