Abstract
Background: Communication and coordination across health, social and educational systems present significant challenges for parents of children with severe physical disabilities. Due to systemic barriers and the lack of integration between electronic records in hospitals and municipalities, parents are required to pass on information between professionals without the necessary knowledge or support. Implementing a simple, messenger-like tool for shared digital communication between parents and professionals could help alleviate this burden and facilitate cross-sector collaboration. However, barriers exist related to sector-specific legislation on data exchange and the General Data Protection Regulation (GDPR). Maintaining core principles such as purpose limitation, data minimization, and transparency may become increasingly challenging if unrestricted communication is allowed within a messenger-like thread. Therefore, as a part of a larger project with the overall aim of reducing the communicative caregiver burden for the parents (SHARE IT project), we aimed to explore how fundamental legal requirements can be met while using a messenger-like tool for shared digital communication.
Approach: Through an iterative co-creation process involving legal advisors (n=6), parents (n=2), and researchers (n=3), brainstorming techniques and a case study of a child with cerebral palsy were employed to explore how fundamental legal requirements could be met if a messenger-like tool was to be used for shared digital communication (LetDialog by VISMA, Denmark). The co-creation process was conducted between January and November 2024 in 15 consecutive meetings and two additional advisory board meetings with other stakeholders involved in the project. Initially, the parents outlined their child's points of contact from birth onwards, establishing a foundation for identifying the professionals involved in their child’s care. Next, shared digital communication was discussed in relation to the simple messenger-like solution while addressing legal barriers and potential risks. Several models were introduced and reviewed collaboratively with the parents. Ultimately, a consensus was reached on a model that balanced the need for shared communication with legal compliance.
Results: We have defined a person-centered model for using a messenger-like tool for shared digital communication across sectors, ensuring compliance with fundamental legal requirements, including the GDPR. The model consists of three main steps: 1) In collaboration with parents, a project coordinator maps the individual team of professionals involved with the child, and based on the parents' preferences, professionals are invited to join, 2) A coordination thread is created, and both parents and professionals across sectors are included, 3) If cross-sector communication is needed, participants in the coordination thread can request the coordinator to create task-specific threads where targeted digital dialogues can take place. In this simple model, principles such as purpose limitation, data minimization, data retention and transparency as well as authorization are upheld.
Implications: The model will be tested in combination with the messenger-like tool to evaluate feasibility and effectiveness. This model may be applicable to similar contexts where legal barriers restrict the use of flexible digital communication across sectors. A thorough identification of legal requirements is crucial for researchers to assess data breach risks and should be considered from the outset of digital solution development.