Tariq Andersen

Designing for collaborative interpretation in telemonitoring: Re-introducing patients as diagnostic agents

PURPOSE We investigate why clinicians experience problems interpreting implantable cardioverter-defibrillator (ICD) data when the patient is absent, and we explore how to re-introduce patients into the socio-technical setup of telemonitored interpretation practices. METHOD An action research study with a design interventionist perspective was conducted to investigate the telemonitoring arrangement for chronic heart patients with ICDs and to identify the nature of the collaborative practices involved in ICD data interpretation. We diagnose the main challenges involved in collaborative interpretation practices. These insights were used to re-design the socio-technical setup of the telemonitoring practices by designing and building a web-based, patient-centric, collaborative application, myRecord, to re-introduce the patients as active participants into the telemonitoring setup. Finally, we introduce myRecord at Copenhagen University Hospital and evaluate the new practices and the collaborative technology related to the transformed role of the patients. RESULTS The interpretation of ICD data is a collaborative practice engaging clinicians and patients and involving three separate collaborative processes: interpretation of numbers; interpretation of general condition; and patients interpretation of own condition and ICD data. In a collocated setup, these three interpretation processes are entangled and seamlessly interrelated. However, in the current telemonitoring setup, only the interpretation of numbers process is fully supported, neglecting the two other processes, and, in particular, the role of the patient. By re-introducing patients into the socio-technical setup of telemonitoring through myRecord, our design acknowledges the collaborative nature of the interpretation process. However, re-introducing patients transforms their role, and leads to new transformed telemonitoring practices, different from both the current telemonitoring setup as well as from the collocated setup. CONCLUSION Telemonitoring practices of patients with ICDs involve three entangled collaborative processes, whereas the existing socio-technical setup only mediate one. myRecord is designed as an add-on collaborative technology to mediate the two remaining collaborative processes. We argue that myRecord solves some of the problems with ICD data interpretation inherent in telemonitoring practices by providing a collaborative, asynchronous space for healthcare practitioners and patients to mediate the two processes that are otherwise lost. Our new socio-technical design also transforms the role of patients considerably, thus new studies should take these insights into consideration.

The agency of patients and carers in medical care and self-care technologies for interacting with doctors

People living with Parkinson’s disease engage in self-care for most of the time but, two or three times a year, they meet with doctors to re-evaluate the condition and adjust treatment. Patients and (informal) carers participate actively in these encounters, but their engagement might change as new patient-centred technologies are integrated into healthcare infrastructures. Drawing on a qualitative study that used observations and interviews to investigate consultations, and digital ethnography to understand interactions in an online community, we describe how patients and carers living with Parkinson’s participate in the diagnosis and treatment decisions, engage in discussions to learn about certain topics, and address inappropriate medication. We contrast their engagement with a review of self-care technologies that support interactions with doctors, to investigate how these artefacts may influence the agency of patients and carers. Finally, we discuss design ideas for improving the participation of patients and carers in technology-mediated scenarios.

Aligning Concerns in Telecare: Three Concepts to Guide the Design of Patient-Centred E-Health

The design of patient-centred e-health services embodies an inherent tension between the concerns of clinicians and those of patients. Clinicians’ concerns are related to professional issues to do with diagnosing and curing disease in accordance with accepted medical standards. In contrast, patients’ concerns typically relate to personal experience and quality of life issues. It is about their identity, their hopes, their fears and their need to maintain a meaningful life. This divergence of concerns presents a fundamental challenge for designers of patient-centred e-health services. We explore this challenge in the context of chronic illness and telecare. Based on insights from medical phenomenology as well as our own experience with designing an e-health service for patients with chronic heart disease, we emphasise the importance – and difficulty – of aligning the concerns of patients and clinicians. To deal with this, we propose a set of concepts for analysing concerns related to the design of e-health services: A concern is (1) meaningful if it is relevant and makes sense to both patients and clinicians, (2) actionable if clinicians or patients – at least in principle – are able to take appropriate action to deal with it, and (3) feasible if it is easy and convenient to do so within the organisational and social context. We conclude with a call for a more participatory and iterative approach to the design of patient-centred e-health services.

SCAUT: using patient-generated data to improve remote monitoring of cardiac device patients

The main problem with remote monitoring of cardiac device patients relates to inefficient communication. This is because patients and clinicians are separated in space and time. In the SCAUT project (2014--2018) we experiment with asynchronous interaction and explore how different types of patient-generated data can improve collaboration. The types of data that patients generate using the SCAUT patient app includes symptom experiences (categories/audio/numeric values), context (activity level/audio), medication list and travel information. We find that it is very important to consider how the data that patients enter can become useful for patients and clinicians simultaneously.