gms | German Medical Science

Introduction: Due to digitization and new digital innovations, e.g. electronic health records, the quantity of health data rises rapidly [1]. The maintenance of data and development of new business models is challenging for companies who invent digital services, including concerns of data security and privacy-compliant health data usage [2], [3]. Privacy is pivotal when developing digital services, therefore, building trust by giving users health data control and insight is crucial [2]. Consequently, this requires data usage concepts. These challenges are tackled by the joint project Smart Care Service (funded by the EU and the state of North Rhine-Westphalia, EFRE.NRW, as part of the European funding program for regional development). The aim of this abstract is to identify practitioners’ understanding of data usage concepts and general aspects relevant for care platforms.

Methods: For this purpose, qualitative guideline expert interviews were conducted following an extensive literature review. The guideline was created using the SPSS-method [4], [5]. Five data protection officers from different institutions have been interviewed so far, mainly by video (60 min). Video interviews save resources compared to face-to-face interviews and record facial expressions and gestures of the interviewees in contrast to telephone interviews [6]. Furthermore, visual content was shared and discussed in the video interviews. Then, the data was transcribed and evaluated with content analysis [7].

Results: In scientific literature, data-usage-concepts are defined in different ways. Generally, they are understood as visual representations of how user data is collected, stored and processed [8], [9]. Although data usage concepts are not explicitly mentioned in the EU-GDPR, they are considered highly important to ensure data protection. Simultaneously, the term data-usage-concept was often imprecisely used and not clearly distinguishable from data protection concepts. Data protection concepts review data usage concepts with reference to the legal basis. The experts saw a great need to standardize terminology with regard to data-usage-concepts. In addition, the procedure for creating a data usage concept must be made clearer. In practice, it is otherwise difficult to create data usage concepts, especially for small projects. It also emerged that there is no clear procedure for drawing up data usage concepts. However, general aspects were identified, such as the analysis of data access, data types, used software and purpose specification. Experts expressed the need of a template adaptable to different projects. Additionally, special protective measures for data use are required in the context of care platforms that manage health data. In particular when data requiring special protection is processed, data usage concepts are imperative. In the future, these will make the development of a flow chart for creating data usage concepts possible. The flow chart will include general components and facilitate health data control to strengthen trust in the care platform.

Discussion: While there is no consistent understanding of data usage concepts, experts agree on main components. The developed model is a first step for an approach to the development of data usage concepts. It unites the results of literature analysis and qualitative interviews. The model will be further developed and evaluated by additional expert interviews, compared to existing data usage concepts, i.e. in medicine informatics, and applied to other contexts outside care.

The authors declare that they have no competing interests.

The authors declare that an ethics committee vote is not required.