
The final objective of the WP7 is the validation of the HealtyCloud outcomes driven by two use cases on cancer and atrial fibrillation research. We conducted a gap analysis to evaluate if the project outcomes would support the challenges that researchers face during the execution of their research projects. The execution and the results of this validation process are reported in this deliverable (D7.3). Project use cases have identified a set 23 challenges that researchers often face when they conduct health-related research projects based on the use and reuse of health data. To have a better understanding of the health-related research projects, we characterised this process and classified the 23 challenges according to the activity in the process they are related to. The health-related research project process has a total of 11 activities, it starts with the definition of the research question and finishes when the researchers submit their results, which may be reused in the future, going through data discovery, access request, data and computational environment preparation, and data provision and use. Project outcomes have been classified as knowledge (guidelines and recommendations), functionality (concrete services), and legal (addressing the legal and ethical basis for the use and re-use of health-related data). Most of the defined process activities (7 of 9) have all the challenges addressed for the three categories. The activities that do not have all their associated challenges addressed from the three categories are all related to computational resources: "to understand request access procedure" and "to request access". Two of them are not addressed for functionality and one for knowledge. There is also one gap that is not related to any challenge, we found a missing user profile in the set of HealthyCloud users profiles definition (D6.1. - FAIR Health Data Portal expected users' interactions), the one characterising computational resource stakeholder. Regarding future steps, to be addressed beyond the HealthyCloud project, some future research lines have been identified. Further exploration related to data management is expected to lead to new challenges, for example regarding the turn down of computational resources at the end of analysis as well as data and results retention. In federated scenarios, when the data is analysed in the data holder premises, we judge that data security issues are minimised, but not having access to the data (only to the results) can bring some specific challenges that need further exploration. For instance, involving a trusted third party that vouches, among others, for data quality. The results of the validation confirm that the access to health-related data is much more regulated than access for computational capabilities. We could anticipate that the broad adoption of Trusted Research Environments (TRE) for processing transnationally sensitive data would represent a change in this situation.
evaluation, proposals, challenges
evaluation, proposals, challenges
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