My PhD project was placed in an interdisciplinary team, aiming to develop a digital ecology of tools for a small nurse-led clinic, focusing on pelvic-cancer rehabilitation. My specific focus was on how the work of the nurses change, when they become part of the design process of a tool that should provide self-monitoring data of their patients.
As a design ethnographer, I first made sense of the nurses' work through participant observation to understand their work before the design interventions. The results showed the importance of strategies of supporting the cancer survivors in making sense of their own bodies. One of the key aspect of the strategies was connected to inquires about symptom frequency.
Next, the team started with development of a digital tool - a mobile application - that would address the frequency problem. I studied the design process of the mobile application, to understand how the participation in the design process further changes the work of the nurses.
Finally, drawing on a research through design approach, I followed the appropriation of the mobile application into the nurses' practice as well as several patients. The insights from this study showed how the work of the nurses changed, when they got access to a new tool and a new type of data collected by the patients.
Pink, S., Fors, V., Lanzeni, D., Duque, M., Sumartojo, S., & Strengers, Y. (2022). Design ethnography: Research, responsibilities, and futures. Routledge.
In this video I talk about my thesis. Below you can find the link to the actual text:
During the first phase, it is important to understand how the work of the nurses looks like and what real problems they are dealing with.
To be able to do that, I conducted an ethnographic study. It lasted approximately 3 weeks (8 hours of pre-observations and 3 weeks of full participation in the field). During this period, I shadowed and observed how the nurses work (both with their computer but also when conducting supportive talks with patients). I engaged in numerous conversations, collected photographs of the environment and documents the nurses use for their work. Later, I also conducted formal interviews.
I gradually started to focus on one of the issues the nurses experienced in their work: frequency issue. When the nurses talk to the cancer survivor (their main way how they learn about the survivor’s problem), they often need to pose a question about frequency of “How often do you …?” (experience pain, defecate, urinate etc.). However, that is an information that is difficult for the patient to recall, especially in sufficient detail that the nurse needs to know. The nurses engage in a range of strategies that help them elicit the needed information in deeper detail (Cerna et al. 2019). However, the information was always only an estimate, hence prolonging the treatment.
To be able to solve this problem, we have decided to draw on the recent advances in self-monitoring and self-tracking and design a mobile application that would allow the patients to document the development of their symptoms over time.
To do that, we brought together a team consisting of: two developers, three researchers (me, as an ethnographer with learning focus, the project manager with Applied IT background and another PhD student with background in Information systems), and a communicator (kommunikatör). Another relevant stakeholders who were involved in some stages of the product development were the main professor (who led the whole clinic and our project) and the patients.
The primary purpose of the application was to complement and support the communication that the nurses have with the patients about their symptoms. Hence, the nurses’ knowledge and expertise became the starting base for the requirements process, even though it is the patients who will use the application to collect quantified data about themselves.
The design meetings were organized as a series of meetings where the nurses, developers, researchers, and patients took part (see Table 1). Six design sessions took place at the hospital where the rehabilitation center is located, approximately once every three weeks from February to April 2016. The main themes of the design sessions were the user experience of the mobile application, the experience sampling, and the daily survey. A high fidelity prototype was then introduced to a group of patients, and a second prototype was created based on their input. The updated prototype was then downloaded by two patients, who tested it for several weeks. The patients’ experiences during the testing were then captured during another workshop and by follow-up phone calls.
Requirements solicitation
During the first meeting, the developers inquired about the nurses’ work and tried understanding what the nurses need to know to be able to help the patient manage their symptoms. These knowledge needs were later translated to the possible features of the mobile application and presented during the next meeting as low-fidelity mockups.
During these meetings, the common ground and language is gradually developed (participants come from heterogeneous domains, and need to first learn how to talk to each other, which terms to use for what).
Prototypes introduction to the nurses
During the upcoming meetings, various prototypes were presented to the nurses, ranging from low-fidelity mockups (a PDF with possible choices of the screens) to high-fidelity mockups (an interactive mockup presented on a computer). The nurses provided their feedback and informed additional requirements solicitation.
Patients’ involvement
Once the prototype was ready enough to be usable (so an actual mobile application), three patients were invited to test the prototype. During a session with them, we introduced the application: one of the researchers showed a walkthrough the application on a screen. After the introduction, we helped the patients to install the application on their phones. We let them use it for ca 3 weeks and then we met again to discuss their experience with the application. Collected feedback was further used to improve the mobile application.
Finally, once this test period was over, we made the application available online and the nurses started involving the application in their work.
This period lasted for approximately a year and a half and it is equally as important as all the previous parts - it is here not only to find bugs (that only appear when fully in use) but also to allow the nurses and the patients to fully understand the potential use of the application and develop their own routines on how to use the application in their work and daily life.
During the first year, one or two of the researchers served as a technical help when technical problems emerged, for example when logging in.
To be able to understand the use of the tool we designed, we recorded multiple phone calls of the nurses with the patients.
Cerna, K., Grisot, M., Islind, A. S., Lindroth, T., Lundin, J., & Steineck, G. (2020). Changing Categorical Work in Healthcare: the Use of Patient-Generated Health Data in Cancer Rehabilitation. Computer Supported Cooperative Work (CSCW), 29(5), 563-586.
Cerna, K., Weilenmann, A., Ivarsson, J., Rysedt, H., Islind, A.S., Lundin, J., & Steineck, G. (2020). Nurses’ work practices in design: managing the complexity of pain. Journal of Workplace Learning, 32, 135-146.
Cerna, K. (2020). Designing self-monitoring data for chronic care. XRDS: Crossroads, The ACM Magazine for Students, 26, 26 - 29.
Černá, K. (2019). Designing for learning and knowing: Nurses in chronic care and patients' self-monitoring data. Phd Thesis. Gothenburg University.
Islind, A.S., Snis, U.L., Lindroth, T., Lundin, J., Cerná, K., & Steineck, G. (2019). The Virtual Clinic: Two-sided Affordances in Consultation Practice. Computer Supported Cooperative Work (CSCW), 1-34.
Cerna, K., Lundin, J., Islind, A.S., & Steineck, G. (2019). Supporting Appropriation of Self- Monitoring Tools in Clinical Settings: The Case of Pain in Cancer Rehabilitation. ECSCW Exploratory Papers, Demos and Posters.
Cerna, K., Ivarsson, J., Weilenmann, A., & Steineck, G. (2019). Supporting self-management of radiation-induced bowel and bladder dysfunction in pelvic-cancer rehabilitation: An ethnographic study. Journal of clinical nursing, 28 13-14, 2624-2634 .
Cerna, K., Islind, A.S., Lundin, J., & Steineck, G. (2018). Decision-support system for cancer rehabilitation: designing for incorporating of quantified data into an existing practice. NordiCHI '18.