Using design methods and participation to research the use of data in chronic healthcare from a user perspective.
How can we start to design healthcare technologies not just for patients, but with patients? — and how can we move beyond theory and use new technology to actively empower patients living with a chronic illness?
These and many other questions is what led me and my fellow student Josefine to do our final project at the IT University of Copenhagen within the field of healthcare technology.
In the following I will swiftly introduce the project, our problem field and the context of our research. However, the primary objective of this snippet is not to give an extensive overview of the entire project, but instead to describe how we utilized design methods and participatory research in order to get a better understanding of the context and experiences of living with a chronic illness.
— valuable insights when the goal is to develop and design healthcare technologies with and not just for patients.
Context
The area of this user study was healthcare technologies, and specifically, healthcare technology aiming at empowering patients with chronic heart failure and a cardiac device.
As the current modus operandi within the healthcare of chronic heart failure patients revolve around a tele-monitoring of patients based on data collected by their implanted cardiac device, we chose to focus our project on data.
In particular, we wanted to research how (and if) self-tracking and the collection of data could help to not just inform the healthcare personnel, but also work in favor of the patients.
Involving the patients in our research
Initially, we did an extensive review of current research in the intersection between healthcare technologies, patient empowerment and the use of self-tracking within healthcare. We quickly discovered that in a lot of cases the technologies ment to empower patients, were (paradoxically) developed without involving the patients in the process. Which often rendered the patients as passive targets of healthcare technologies.
In order to break with this, we decided to approach this study by involving the patients throughout the research process. Specifically we took a participatory action research approach to the research. PAR is an approach, which draws on many of the same things as participatory design and co-design. It’s iterative, it emphasizes the involvement of users, and seeks to explore the field by using actions (e.g. prototypes or challenging the status quo) as tools to unfold the research, gain valuable insights and evaluate these insights.
This ment that we structured our research as an iterative process, going back and forth between collecting data and analyzing key insights, always building on top of our insights. Put simply, our participatory research process was as follows;
- 1) Explorative interviews with patients, followed by an analysis of the insights.
- 2) Conducting new in-depth interview with patients, followed by an analysis of the insights.
- 3) Using design methods to explore the effects of data, followed by an analysis of the insights.
- 4) Reflecting and evaluating our findings together with the patients. Followed by a final analysis of the insights.
Using design methods to explore something that does not yet exist
As part of our research, we wanted to explore and understand how self-tracking data and clinical data from the cardiac device might affect the patients and their feeling of empowerment. As such a solution didn’t exist at the time, we relied on our knowledge within design and design methods, using low-fidelity prototyping, sketching and design interventions to explore the effect of self-tracking and clinical data from a patient perspective.
In order to do so we sketched a series of low-fidelity prototypes of data visualizations showing the patients clinical data as well as their own self-tracking data (i.e. patient generated data).
Pen and paper allowed us to quickly sketch three different low-fidelity prototypes, which we could bring with us to the next step — a design intervention together with patients.
Introducing prototypes of an ‘alternative reality’ in a design intervention allowed us, in collaboration with the patients, to create an embodied experience and explore how patients experienced this new access and use of their own data.
Furthermore, in order to get the best insights, it was very important for us to make the experience as authentic as possible — despite of the low-fidelity prototypes. Therefore, we made sure that our sketches contained authentic data (clinical and patient-generated) from the actual patients we were going to introduce them to.
Through the setting of a design intervention, the prototype first of all became a research device — a device that made it easier for the patients (and us) to grasp the experience of seeing their own data. Simultaneously, it also changed the setting from an ordinary interview and turned it into a setting of ethnographic inquiry — the prototype made the experience observable.
Results
Our participatory and design-related approach allowed us to break with the undesirable and outdated tradition of not involving the end-users in the research and development of new healthcare technologies. Furthermore, our low-fidelity prototypes allowed us to introduce patients to an alternative reality and through our design intervention not simply imagine, but observe how users reacted when they were introduced to their own self-tracking data and the clinical data from their cardiac device.
