Exploring human-data interaction in clinical decision-making using scenarios:Co-design study

Background: When caring for patients with chronic conditions such as chronic obstructive pulmonary disease (COPD), health care professionals (HCPs) rely on multiple data sources to make decisions. Collating and visualizing these data, for example, on clinical dashboards, holds the potential to support timely and informed decision-making. Most studies on data-supported decision-making (DSDM) technologies for health care have focused on their technical feasibility or quantitative effectiveness. Although these studies are an important contribution to the literature, they do not further our limited understanding of how HCPs engage with these technologies and how they can be designed to support specific contexts of use. To advance our knowledge in this area, we must work with HCPs to explore this space and the real-world complexities of health care work and service structures. Objective: This study aimed to qualitatively explore how DSDM technologies could support HCPs in their decision-making regarding COPD care. We created a scenario-based research tool called Respire, which visualizes HCPs’ data needs about their patients with COPD and services. We used Respire with HCPs to uncover rich and nuanced findings about human-data interaction in this context, focusing on the real-world challenges that HCPs face when carrying out their work and making decisions. Methods: We engaged 9 respiratory HCPs from 2 collaborating health care organizations to design Respire. We then used Respire as a tool to investigate human-data interaction in the context of decision-making about COPD care. The study followed a co-design approach that had 3 stages and spanned 2 years. The first stage involved 5 workshops with HCPs to identify data interaction scenarios that would support their work. The second stage involved creating Respire, an interactive scenario-based web app that visualizes HCPs’ data needs, incorporating feedback from HCPs. The final stage involved 11 one-to-one sessions with HCPs to use Respire, focusing on how they envisaged that it could support their work and decisions about care. Results: We found that HCPs trust data differently depending on where it came from and who recorded it, sporadic and subjective data generated by patients have value but create challenges for decision-making, and HCPs require support in interpreting and responding to new data and its use cases. Conclusions: Our study uncovered important lessons for the design of DSDM technologies to support health care contexts. We show that although DSDM technologies have the potential to support patient care and health care delivery, important sociotechnical and human-data interaction challenges influence the design and deployment of these technologies. Exploring these considerations during the design process can ensure that DSDM technologies are designed with a holistic view of how decision-making and engagement with data occur in health care contexts.