Duration 1.1.2019 – 28.2.2023

Smart4Health: Citizen-centred EU-EHR exchange for personalised health

 

Team: Ulrike Felt (PI)Susanne Öchsner, Robin Rae

Funding: Horizon 2020

Project Description

The Horizon2020 project Smart4Health aims at developing, testing and validating a secure cloud-based interoperable health data platform prototype. It will allow citizens to upload  data from three different kinds of sources (see Figure): (1) national electronic health records as well as records from other health care providers; (2)  health-related data that are collected in the context of work environments; as the empirical case this project uses to build the prototype is backpain, this would for example be data from wearables or physiotherapeutic treatments; and (3)  privately collected health-related data (produced through personal tracking devices, health apps, …). The platform should also give citizens the option to share their data with trusted people as well as to donate them for research purposes.

Smart4Health puts European citizens center stage – conceptually and methodologically. If the health data infrastructure is supposed to empower users and citizens that care for their health, then we need to understand e.g. how users conceptualize possibilities, what issues and concerns they voice, and which rights and obligations for such “health-data related citizens” are being embedded into the infrastructure. Producing an adequate solution for a portable, interoperable citizen health data platform prototype will therefore proceed in a process of co-creation/co-design involving citizens as well as diverse health-care professionals. Through this approach, future users are put in the position of (1) playing a central role in identifying problems and needs; (2)  expressing values and concerns; (3) proposing requirements to be met; and (4) being involved in the testing when gradually building the proto-type platform.

Our team is specifically responsible for addressing the societal aspects of the project. In particular, we will take care of organizing a process of co-creation/co-design. In order to achieve this “citizen-centredness”, the development process will concretely engage with users in eight so-called Citizen Use Cases involving citizen users, professional users (doctors, nurses, physiotherapists) and other stakeholders (e.g. hospitals, national EHR providers) in different countries and empirical settings. They serve as case studies for the citizen-centered development, testing and evaluating the platform prototype and the different data areas and data practices that will be available to them.

The research and innovation process in Smart4Health will follow the four dimensions of the Responsible Research and Innovation approach — anticipation, reflexivity, inclusiveness and responsiveness. This will be realised through organizing the process in a cyclical manner containing five interconnected steps (see Figure). This assures to include users  and  reflects the complexity of the endeavor in an adequate manner. Going through these different steps comes with specific attention to integrating different concerns, needs, expectations and positions and regular feedback loops. It thus means to turn the research, development and design processes into more transparent, interactive processes by which societal actors such as patients and citizens, professional users and platform developers can become mutually responsive to each other.

 

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Coordinators

  • Ricardo Gonçalves Uninova - Instituto de Desenvolvimento de Novas Tecnologias for administrative coordination
  • Erwin Böttinger, Hasso-Plattner-Institute for the scientific/technical coordination.