Good news! The Patient Advisory Board of the MIA-PROM project recently held its second meeting, focusing on two important topics: the selection of PROM (Patient-Reported Outcome Measures) questions to be collected in the project and the discussion of the social role and identity of the assistance system.
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!