Reconfiguring Good Care with Digital Technologies (GooDT)

--- tags: Data Mangement --- # Reconfiguring Good Care with Digital Technologies (GooDT) Version Oct 19. 2021 ## Draft ## Since GooDT collects __sensitive personal data__, in this DMP, we will assess appropriate technical measures in relation to (1) data collection, (2) data sharing (3) _data storage during and after the project_ and (4) responsibility in ensuring compliance with these measures.  __Data collection__: Informants participate _anonymously via interviews and observations_ only after informed consent is reached. We will collect all data in homes and in institutions. We will record interviews using a Dictaphone. Photos taken with a special camera supplement observations (private telephones are not used). No faces will be included in photos. All interviews will be transcribed verbatim. Data collection will exclusively focus on values and the everyday use of digital technologies in light of relations to relatives, friends and care providers. Helped by the researchers the user (and or a proxy) will make short video clips (using a special video camera). We expect that this data will be of particular value to the analysis of care practice and ethics.  __Data sharing__: The informant (and/or a proxy) will have the opportunity to review and supplement interview transcripts. _Informants have full access to ethnographic notes/photos/video_. We will exclusively share the video footage at workshops restricted to the group of researchers and only in _anonymised form_. Presentations and publications may feature anonymized photographs.  __Data storage__: During the project period, all data will be _securely stored behind username and password_ in _designated maps_. We will store _back-up files_ in locked filing cabinets that are made accessible to the GooDT researchers only. The researchers across countries will only share anonymized analyses of data. _Raw data files_ will not be shared across countries/research groups at any time. Data will be kept in _locked filing cabinets_ according to the various national laws. Then all data will be _shredded_.  __Responsibility__: Ensuring compliance with these measures lies on all PIs as well as on all researchers working on GooDT. We need ongoing consideration of _good practice_ and _not a risk assessment_ in relation to possible non-compliance with our informants' rights. The project leader however has a special responsibility in ensuring that this DMP first function as a living document and becomes the subject of continuing deliberations in the research group throughout the project on good handling of data.  ## Comments ## * Introduction * not the DPO or TTO * What is your data philosophy * Anonymization * Personal and sensitive data: Is there anything in this dataset that could be tied to a person? This could be a physical characteristic, but also behavior of a person, movements, communications. Note that e.g. readouts about the performance of an airplane are considered to contain personal data of the pilot! OR Personal information can be sensitive if it is for instance about the health, sexual orientation, religion of a person. But there are also other classes of sensitive information: e.g. locations of rare species in biodiversity could be sensitive and should not leak to poachers. * Please note that GDPR law in Europe specifies that data is only anonymous as long as nobody in the world has enough information to re-identify the subject. * call requirements * (15 page project proposal, Part B– Knowledge exchange and potential impact (ca. 4 pages)) Data management plan - plan for the storage of and access to data collected; how the project will be archived (project website, outputs and data) * two issues * Information security --> security --> GDPR and legality issues * Data lifecycle management --> seem more like the call's intention * Main issue from a data lifecycle perspective: why would you not make a anon data FAIR/why use a file shredder instead of long-term preservation * FAIR data management: https://www.howtofair.dk/ * data or metadata * data types * audio files * transcripts, text files * image files * video files * data processing agreements with third parties * data managment budgetting --- Science Europe DMP Template 1. Data Collection * What data will you collect or create? * How will the data be collected or created? 2. Documenation and Meta-data * What documentation and meta-data will accompany the data? 3. Ethics and Legal Compliance * How will you manage any ethical issues? * How will you manage copyright and Intellectual Property Rights (IPR) issues? 4. Storage and Backup * How will the data be stored and backed up during the research? * How will you manage access and security? 5. Selection and Preservation * Which data are of long-term value and should be retained, shared, and/or preserved? * What is the longterm preservation plan for the dataset? 6. Data Sharing * How will you share the data? * Are any restrictions on data sharing required? 7. Responsibilities and Resources * Who will be responsible for data management? * What resources will you require to deliver your plan? --- Data Management Plans (DMPs) are a key element of good data management. A DMP describes the __data management life cycle__ for the data to be collected, processed and/or generated. As part of making research data findable, accessible, interoperable and re-usable (FAIR), a DMP should include information on: * the handling of research data during & after the end of the project * what data will be collected, processed and/or generated * which methodology & standards will be applied * whether data will be shared/made open access and * how data will be curated & preserved (including after the end of the project). A DMP is required for all projects participating in the extended ORD pilot, unless they opt out of the ORD pilot. However, projects that opt out are still encouraged to submit a DMP on a voluntary basis. ---