Despite the hot summer weather, we saw great interest. Many attendees interacted with the system and shared their questions. On a whiteboard, we gathered open feedback—suggestions, criticism, and ideas that will inform the next stages of development.

Participation between aspiration and reality

A central aspect of our project was the close collaboration with those affected. The system was designed to tackle as many barriers as possible for patients and enable easy and accessible use. However, it became clear that participation in the development of the technology presented challenges. A limited scope for defining problems and solutions, time pressure, and a lack of formal involvement options made it difficult to consistently implement participatory processes. By combining a participatory design approach with co-design elements, we wanted to ensure that the assistance system was orientated toward the needs of real users. The poster summarises all the decisions made by the patient advisory board and gives an overview of the final prototype. Together with our patient advisory board, we reflected on the process in a final workshop and evaluated which decisions could be implemented.

Participating in the Berlin Workshop for Participation 2025 was once again a great pleasure for us and provided us with a great opportunity to share our experiences with other researchers, practitioners and stakeholders.

Another part of the meeting was the testing of the final system. The members of the advisory board had the opportunity to thoroughly test all functions once again and give their final assessments. The feedback gathered confirmed that many of the suggestions and decisions made during the project had been successfully implemented. The advisory board thus made an important contribution to improving the system. At the same time, we noted which aspects could not be implemented technically and where we were not quite able to fulfill our promises.

The results and findings from this last meeting will feed directly into the contribution for the upcoming Berlin Workshop for Participation 2025, at which the MIA-PROM team will be present with a poster. All members of the advisory board – except one person – are involved in this contribution as co-authors. We are particularly pleased that our advisory board member Beate Detlefs will be actively involved in the conference, which means that the perspective of patients will also be represented in this more academic context.

At the end of the meeting, we had dinner together, where we were able to review the past two years in a relaxed atmosphere. We want to thank all members of the advisory board for their commitment and valuable contributions – without you, the project would not have been possible in this form!

Although our work with the Patient Advisory Board has officially come to an end with this fifth meeting, we have agreed to continue working together during the evaluation phase and to try out participatory research approaches in which we want to analyse research data together with the Advisory Board.

The talks looked at the topic of trust in care technology from different perspectives: Philosophy of technology, sociology, human factors as well as work science contributions were presented and we learned a lot about the complex mechanism of trust.

Our contribution was focused on the special influence of the embodiment of an artificial agent (e.g. a language assistance system or a robot) on the dynamic development of trust. Based on various theoretical approaches, we have developed a model that – regardless of the embodiment (i.e. virtual or physical) – distinguishes between two levels of reference that become relevant when assessing trustworthiness or the need for trust: On the one hand, the so-called ‘mind’ layer (mind level) and, on the other hand, the so-called ‘body’ layer (body level). The concrete relationship between these factors – a virtual avatar can also be evaluated on the body level – results in a concrete measure of required trust, which we have named ‘agentic performance trust’. We plan to test this concept in future empirical work.

The poster can be accessed as PDF (513 kb.)

The picture shows Manuela Marquardt in conversation with Philip Nickel from Eindhoven University of Technology.

Motivating patients to participate in our field study is a critical factor in our project, and we have therefore discussed the best ways to achieve this goal. Demonstrating concrete health benefits for participants and contributing to health research are intended to provide a noticeable incentive to participate.

The discussion on assistance services led to a variety of suggestions. Various assistance services were proposed, including motivational interjections, side conversations for distraction and increased concentration, approaches from the field of gamification, and the use of smileys as progress bars (similar to those at highway construction sites). The possibility of using color changes or music to make interactions more engaging was also considered. It was emphasized that the inquiry about assistance services and needs should take place at the beginning of the interaction. Particularly noteworthy are ideas for individual adjustments to voice output, which include a dynamic adjustment of speech speed and pitch to potentially enhance the personalization of the user experience. The questionnaire app, used for the actual collection of health data, was also a subject of debate. Several nuances in design as well as usability were provided as feedback.

The appearance of the assistance system was also discussed. Based on the use of Furhat (see the post about the third meeting), we had suggested equipping the robot with a neutral but recognizable medical working attire associated with an organizational. The board received this proposal positively and made specific decisions regarding the choice of clothing, and its color, and suggested adding a name tag with an organizational affiliation.

To decide this question, specific options were developed and discussed with the advisory board. Among the options were better known robots such as Jibo or Pepper, but also lesser known ones such as the PLEN Cube from Japan, the Furhat or the newly developed Navel. A playful version (EMO) as well as an abstract version of a robot was also brought in, namely, the idea of using a curved OLED display on which a digital avatar then appears in turn.

The meeting was able to produce a fairly clear vote, with most people from the advisory board speaking out against the somewhat larger and anthropomorphic (i.e. human-like) designed robots such as Pepper or Navel, as these offered too much functionality for the purpose, or were therefore not suitable for the project. EMO, on the other hand, was perceived as too playful for the serious context. The Furhat and the idea of using an OLED display were positively received, as this would allow maximum flexibility, which in turn also takes our research design into account.

The MIA-PROM project focuses on involving users in the development process to ensure that new technologies meet their needs and have a positive impact. In the past, decisions about technologies were often made without considering the actual users, leading to unintended consequences and sometimes even to low or no acceptance by users. To avoid this, the project takes a participatory approach and works closely with the Patient Advisory Council. At its first meeting on March 30, 2023, the six-member advisory board, which includes patients and healthcare professionals, came together in Berlin to introduce themselves and get to know each other. They shared their individual skills, interests and experiences and discussed the basic ideas of the project. The main focus was on how the advisory board can actively contribute to the project.

In the second meeting on May 11, the Advisory Board addressed the important task of selecting PROM questions. These questions are critical because they help to obtain valuable insights about patients’ health and well-being directly from them – so they must be both appropriate and relevant. In this regard, the Advisory Board decided, for example, to make the questions more resource-based rather than deficit-based in order to make respondents feel more comfortable during the survey. Similarly, specific items we suggested – on mobility, for example – were omitted because they were perceived as not generally applicable. For example, in the question about being able to drive a car. In addition, other topics were identified for inclusion in the questionnaire – such as the question about pets or sexuality.

In the second half of the meeting, we tried to work together to determine the social role and identity of the assistance system to ensure that it was designed to be user-friendly and appropriate to the context. The question of identity, that is, what should distinguish the system as an artificial agent (so to the question of external appearance: animal, human, or robot?), was the more difficult of the two questions. It should also be competent, but also appealing and cute so that patients can establish an emotional connection. After a thorough discussion, it was decided to come back to this question at a later stage – based on concrete examples. Regarding the social role of the agent, i.e. whether it should act as an expert or as a friend, the patient advisory board voted more clearly for the role of the befriendet doctor. The doctor friend is characterized by having great competence in the medical field and thus also the questionnaire, but at the same time she should not appear in a purely institutional role in the conversation with the patient, but rather as a befriendet person who can also communicate on an informal – more familiar – level.

At this point, we would like to express a special thanks to Ms. Ringfort-Felner, who provided us with role cards for assistance systems, which we were allowed to use in our session. Interested readers can find the underlying NordiCHI publication here, a link to the working group in Siegen here.

The meeting ended with a dinner together in a friendly atmosphere. We are looking forward to meeting again in the online format to follow up on the decisions initiated!

We sincerely thank Robert Spang for the team photo, as well as the other recordings from the event!