Implementation Research Network in Stroke Care Quality, COST action CA18118

The closing of the IRENE COST Action in October 2023 will mark the end of four and a half years of wonderful participation and fruitful collaboration on conducting research on stroke healthcare solutions especially with respect to the Registry of Stroke Care Quality (RES-Q) a global platform that collects data to improve stroke care quality.

In January 2020, three HMI researchers (Knoche, Hougaard, Kristensen) evaluated and critiqued the functionality of the current RES-Q website and discussed ways forward for structuring feedback from the registry in Brno with the WG3 team. During the spring of 2021 Knoche supervised the master thesis of Mathias Kristensen and Anders Ehlers Kobberø on how to better provide feedback to registry users to compare their performance with other hospitals.

During the height of the Covid pandemic lock-down, Knoche led three workshops on data visualisation in scientific communication with members of the COST network and managed virtual network grants. In the summer of 2021 Knoche co-led the writing of the successful Horizon Europe RES-Q+ proposal on the re-use of registry data in combination with virtual assistants.

In January 2022, Nemcova led and co-organised a short term scientific mission (STSM) with the help of ICRC, RES-Q and STROCZECH. The objective of the STSM included the initial exploration of user needs, which was facilitated through in-depth interviews with 18 stroke survivors in various parts of Czechia.

A LEGO serious play workshop in Lyon in May of 2022 colocated with ESOC under the direction of Knoche elicited the various needs and problems clinicians are facing when obtaining and using feedback from RES-Q in clinical settings with other stakeholders, these insights were later shared at the COST meetings in Prague with all members.

At a meeting between seven members of the HMI research group (Knoche, Skovfoged, Ziadeh, Hougaard, Kristensen, Nemcova, Blanco) and the RES-Q management team in Brno in July 2022 discussed advanced registry dashboards.

In August 2022, Ziadeh and Kristensen analysed both the stroke survivor and RES-Q user needs in two VMs. This involved gathering data from all the previous work done in cooperation with IRENE and re-analysing it using new literature collected during our research. These activities resulted in a better understanding of the tasks and journeys of both clinicians using RES-Q and patients.

During the spring of 2023, the HMI group supervised four student groups working on novel concepts to generate patient reported outcome data to be coupled with registry data (see LinkedIn post https://tinyurl.com/ytz8wfhm).

A workshop led by Knoche (various co-organizers included Robert Mikulik) in Hamburg in April 2023 at the flagship (CHI) conference in human computer interaction, focused on “Identifying Challenges and Opportunities for Intelligent Data-Driven Health Interfaces to Support Ongoing Care” with 35 researchers (see LinkedIn post https://tinyurl.com/bdpnzuys for details).


Based on Ziadeh’s analysis of RES-Q user needs, the HMI research group (Ziadeh, Knoche, Skovfoged, Nemcova) conducted a follow-up workshop with 12 clinicians from 10 countries. This workshop aimed to further breakdown the process of using RES-Q in hospitals.

Ziadeh continued their research through September to October on a STSM in Tilburg (NL), where they collaborated with Dr. Maryam Alimardani at the department of cognitive science and artificial intelligence in Tilburg University.

Only a month later, the HMI researchers (Knoche, Ziadeh, Skovfoged, Nemcova) gathered once again to meet their partners (clinicians/hospitals) in Prague to discuss registry management tasks. To follow up on the findings from the patient study in January, Nemcova and Skovfoged delved deeper into patient needs by organising collective workshops with seven stroke patients.

In May 2023, research on clinician dashboards continued as Knoche and Skovfoged met up with several clinicians from the COST network at Munich’s ESO conference to run a workshop on registry dashboard exploratory analysis investigation
(see LinkedIn post https://tinyurl.com/3tx4j6ep for details)

Knoche ran a PhD course workshop on explainable AI in healthcare specifically for the use in clinical dashboards in June’23 at Aalborg University Health Department (see LinkedIn post https://tinyurl.com/54sjzz8j for details)

From August to September, Ziadeh and Nemcova co-organised an STSM that involved collecting data from 22 clinicians using a prototype of a discharge importer tool in several parts of Czechia . Participants with diverse RES-Q experience provided crucial feedback on the usability, acceptance, and social agency of the prototype.

As part of a virtual mobility grant, during September and October Knoche prepared materials for a workshop with clinicians from the COST action to brainstorm uses of AI in clinical contexts during the final COST meeting in Split.

A number of publications have been finished as a result of this work:
see the links further below:
"Feeling Unseen": Exploring the Impact of Adaptive Social Robots on User’s Social Agency During Learning
Ziadeh, H., Ceccato, C., Prinsen, J., Pruss, E., Vrins, A., Knoche, H. & Alimardani, M., 13 Mar 2023, Companion of the 2023 ACM/IEEE International Conference on Human-Robot Interaction: HRI ’23 Companion. Association for Computing Machinery, p. 378-383 6 p.

Virtual Mirror Therapy in a VR pointing task for stroke rehabilitation
Hougaard, B. I., Evald, L., Brunner, I. & Knoche, H., May 2022, European Stroke Journal. SAGE Publications, Vol. 7. p. 546-588

Identifying Challenges and Opportunities for Intelligent Data-Driven Health Interfaces to Support Ongoing Care
Knoche, H., Abdul-Rahman, A., Clark, L., Curcin, V., Huo, Z., Iwaya, L. H., Lemon, O., Mikulik, R., Neate, T., Roper, A., Skovfoged, M. M., Verdezoto, N., Wilson, S. & Ziadeh, H., 19 Apr 2023, CHI 2023 - Extended Abstracts of the 2023 CHI Conference on Human Factors in Computing Systems. Association for Computing Machinery, 354

Designing for Reflection in Telehealth: Chronic Obstructive Pulmonary Disease Patients as Self-Trackers
Nadarajah, S. G., Pedersen, P. W., Skovfoged, M. M., Ziadeh, H. & Knoche, H., 13 Dec 2022, EAI PervasiveHealth 2022 - 16th EAI International Conference on Pervasive Computing Technologies for Healthcare. European Alliance for Innovation (EAI)

Telling the Story Right: How Therapists Aid Stroke Patients Interpret Personal Visualized Game Performance Data
Hougaard, B. I. & Knoche, H., 20 May 2019, Proceedings of the 13th EAI International Conference on Pervasive Computing Technologies for Healthcare, PervasiveHealth 2019. Association for Computing Machinery, p. 435-443 9 p.

“I Have to Do Something About It” - An Exploration of How Dashboards Invoke Self-Reflections in Chronic Obstructive Pulmonary Disease Patients
Nadarajah, S. G., Pedersen, P. W., Skovfoged, M. M., Ziadeh, H. & Knoche, H., 2023, Pervasive Computing Technologies for Healthcare - 16th EAI International Conference, PervasiveHealth 2022, Proceedings. Tsanas, A. & Triantafyllidis, A. (eds.). Springer Science+Business Media, p. 619-635 17 p. (Lecture Notes of the Institute for Computer Sciences, Social-Informatics and Telecommunications Engineering, LNICST, Vol. 488 LNICST).

Of apples and oranges - To whom stroke registry users want to compare themselves to set goals for hospital quality indicators
Kristensen, M. S., Kobberø, A. E., Vařecha, M., Svobodová, V., Mikulik, R. & Knoche, H., 3 May 2022, European Stroke Journal. SAGE Publications, Vol. 7. p. 393 P0859