Guidelines for Data Handling
There are three main areas where data handling, and therefore privacy and security, are categorized in relation to Prosperity4All: data handling of end user’s preferences and needs, data handling in the developer’s spaces and marketplace and data handling in the project environment (e.g. evaluation).
Personal data handling of end user’s preferences and needs
End user’s preferences and needs within GPII will be stored either locally on a device or within a cloud. It is clear that the benefits offered by cloud computing are numerous, however several outstanding questions exist regarding the relative security of cloud-based systems, and those that use it as compared to traditional, on-premises solutions. The use of cloud computing raises ethics issues around storing confidential user data on a system that might not be entirely controlled by developers and users.
One of the questions we can ask ourselves when facing data handling and privacy dealing on the cloud will be: how can the data in the cloud be used? This is important for the project, as users' needs and preferences may be stored in the cloud.
In general, all information the user enters into a cloud computing application should be treated as confidential, private information that cannot be used by the cloud computing provider (Newton, 2010). Furthermore, the cloud computing provider should only be permitted to view any of the user’s private information with the user’s explicit consent (for example, to troubleshoot a technical issue).
For storing user preferences and needs in the cloud, Prosperity4all will use mechanisms developed by the previous project Cloud4all (see D104.2 and D104.3 of Cloud4all). Since, Prosperity4all goes beyond Cloud4all in offering more elaborate services, it might have to expand existing mechanisms for protection of user data. If so, these issues will be handled within WP201 (security architecture) as well as within each relevant SP2 and/or SP3 deliverable.
Personal data handling within the developers’ tools and marketplace
Developers within Prosperity4all will work together in a common developers’ space, where they can share tools, as well as knowledge within the experts’ network. A marketplace helps developers to market worldwide. Within these modules, participants will register personally. All information given will be shown transparently to the participant. Both modules build upon the GPII personalization infrastructure.
The information regarding data security and data handling as well as privacy within the GPII personalization infrastructure will be presented and updated in deliverables of WP 201. An updated version of this Ethics Manual will contain further information about how personal data of the developer is handled within GPII.
Personal data handling and privacy concerns in the project work environment of Prosperity4All
In "Work practices and environments in Prosperity4All Personal data handling and privacy" a series of questions will serve as guide in order to make sure all processes performed during the research activities carried out by people involved in Prosperity4All in their work environments are compliant with the norms. On top of this there will be assurance on secure handling of private data (data touching upon the identity and private life of the individual) and acknowledgement of the ethics policy regarding that. Evaluators should clearly explain to the volunteers that in line with the project ethics policy, the personal data that will be asked during the trials will not be permanently stored but it will be recorded only temporarily to allow scientific (statistical) analysis (also to provide feedback to them about the results of the studies).
Any personal information will be stored separately from data gathered during the pilots.
Trials will also take place online. In this case, the user will online get full information about who will get his information, which information is stored, how long it is stored and where it is stored. Also, he will have been given the details to contact in order to withdraw his data afterwards. When transferring information to further institutions, the user has to confirm this transfer in advance.
The data that will be asked during the trials from and about end users are namely: name, gender, age, specific type of impairment (if user with impairment) or expertise, address, e-mail and telephone number, familiarity with IT (extending in mobile and desktop applications) and which IT equipment in specific, main AT used and specific difficulties encountered while using them.
The data that will be asked during the trials from and about implementers are namely: name, gender, age, address, e-mail and telephone number, familiarity with AT (and which), expertise, professional background, years and domain of expertise.
The approach to be followed within all evaluations should be acknowledged by participants:
- All participants will provide the information mentioned above to a single person in each pilot site. It will be stored in a protected local database (to allow contacting them further and arranging with them the sequence of the current or future tests). The contact person will issue a single Test ID for each of them. This person will not participate in the evaluation and will not know how each user behaved.
- Volunteers’ names and contact details (address, telephone, e-mail) will be kept in the database only for the duration of the project. Such data will not be communicated to any other partner or even person in each pilot site. Once the project ends, they will be deleted.
- Since personal data will be deleted after the end of the project, no follow-up studies with the same people will be feasible.
- For the statistical analysis, the answers provided by the participants will be associated with their type of impairment(s) (if any) or expertise, age, gender as well as familiarity and use of IT and AT.
- The Local Ethics Committee in each pilot site will name a person responsible for monitoring and guaranteeing that the relevant procedures are strictly followed and that all recommendations and national relevant laws and regulations are being respected.
- Finally, the evaluators should ask the participants if they are taking any specific medication or other information that would be needed to be known in a medical emergency centre.