Almost 3,5 years of research work, five countries where it was conducted, 230 pages of the doctoral dissertation, 40 mins of defence presentation, many sleepless nights but also gratitude that is impossible to quantify to everyone who supported me along the way and participated in my studies! In this post, I briefly (less than 230 pages) discuss what I have been working on, how was this unique experience for me, and what I have learned and obtained during those years. Of course, there is also a “future work” section.
PhD defence commission (left to right): prof. Vincenzo D’Andrea UNITN, prof. Maurizio Marchese UNITN (my PhD supervisor), me, Giampaolo Armellin (CBA Informatica Srl). Connected remotely: prof. Åsa Cajander Uppsala University and prof. Tone Bratteteig University of Oslo.
In the twisty course of my doctoral studies, my PhD topic progressed and changed over time. My initial focus has been on the interaction design of systems and applications for older adults, which resulted in a systematic literature review that took much more than the first year of my PhD. During the second year of my doctoral studies, I have joined the action research project “Collegamenti” (from it. “connections”) with aged care as the primary context of the studies. My colleagues at the Social Informatics research group (and beyond) and I studied if and how technology-based mediation of information exchange can improve care for older adults, which motivated me to research information design as well as interaction design of such digital channels. With these objectives, I primarily focused on the triad of aged care: family caregivers and their information needs, care professionals and their work and communication practices, and older adults. While I conducted more studies with informal and formal caregivers, the views and disclosure preferences of older adults themselves was an essential (and challenging) piece of the picture that I wanted to cover. It was possible during my visiting period at the Berkeley Laboratory for Usable and Experimental Security (BLUES), UC Berkeley. Researching human factors in such a sensitive and complex context is unavoidably accompanied by many challenges that I did not even imagine to face in the beginning.
Research context challenges
As I mentioned earlier, most of my studies were conducted in the terminal aged care facilities (nursing homes) throughout the north of Italy. Besides the obvious advantage of having a strong motivation to learn Italian, it has been a complicated task, as we had to navigate a complex nature of life situations related to severe and terminal illnesses and care-related difficulties. There were many unsuccessful research stories such as difficulties in communication with the care structures and senior organisations, dramatic personal stories of the participants and their (understandable) lack of interest in the studies that often resulted into the failed recruitment. Many ambitious plans had to go through the delays and revisions of the initial research objectives. Nevertheless, this work felt rewarding due to its social impact, which was always a great motivation during my PhD journey, and opportunity to meet and talk to professionals and family members taking care of nursing home residents. Another bright side I like to look at regarding these challenges is that I was motivated to go “out there” and establish collaborations with other research groups around the world, which is another specifics of my PhD. Well, “living on the road” was another challenge but less academic.
Research collaborations
I cannot imagine how my PhD thesis would look like without all the international research collaborations, which allowed me to explore new academic and geographic environments, meet great people, write papers with and learn from them. For instance, Sweden is very different from Italy not only regarding the number of hours of sunlight in winter but also different research group dynamics and work style. Working with prof. Åsa Cajander and her research group - who adopted me for three cold and dark Swedish winter months at Uppsala University - let me gain the knowledge and experience in analysing large scale data from the study on the Swedish national patient survey and get insights about patients’ views on electronic health records. Everything is interconnected, and the interest I developed on the security and privacy of sharing health records was later “realised” during my internship at UC Berkeley at the Berkeley Laboratory for Usable and Experimental Security (BLUES) working with Dr Alisa Frik and prof. Serge Egelman, which was one of the most important and valuable moments of my academic journey. There was also much more sun in California :)
There were two shorter-term but more exotic visiting periods I had in summer-autumn 2016: at the Institute on Aging, National Institutes of Health at the University of the Philippines Manila and the Universidad Católica “Nuestra Señora de la Asunción” in Paraguay. Both internships were under a big H2020 project - RISE “DREAM”. With my colleagues, I conducted interviews, focus group discussions, and observation studies with the focus on the provision of care and monitoring of older care recipients, to understand main stressors related to caregiving, and the impact of technological tools in that context. Even though these internships did not result in publications, the experience I gained is valuable.
Some wisdom at the end of the story and future work
My ambition stayed the same - to establish the bridge between academia and industry and make my research findings available, applicable, and, hopefully, more useful for the designers, developers, and policymakers. I think it is impossible without conducting ‘“field studies”, action research, going out of the lab and being in contact with the stakeholders: patients, families, professionals, and other actors in case of digital health technologies. Even though security and privacy of e-Health was only a lateral topic during my PhD - which was only 3,5 years, otherwise, I would go for it - I have the opportunity to work on it during my PostDoc at Trinity College. And we will see what happens next. Most of the parents like to talk about their babies. PhD thesis is like having one too, so if you have any questions about my PhD experience, let me know!
More about my defence in the post of prof. Åsa Cajander - “Information Sharing Between Patients, Relatives and Health Care Professionals'“