Alignment of Concerns: A Design Rationale for Patient Participation in eHealth

Abstract

The emergence of patient-centered eHealth systems introduces new challenges, where patients come to play an increasingly important role. Realizing the promises requires an in-depth understanding of not only the technology, but also the needs of both clinicians and patients. However, insights from medical phenomenology bring forth how physicians and patients focus on different aspects of illness and that they often have starkly divergent concerns. This has important implications for the design of eHealth systems that seek to engage patients as active participants. We emphasize the crucial importance of acknowledging these fundamental differences between patients' and physicians' everyday projects and we illustrate it by three case examples from a participatory design project of constructing a personal health record for chronic heart patients and their clinicians. We summarize our suggestion as a design rationale for successful eHealth, termed 'alignment of concerns'.

"It just seems outside my health"

“…Patients' disclosures reflected perceptions of what was pertinent to share, assumptions about the consequences of sharing, and the influence of interpersonal relationships with providers. Our findings revealed limitations of existing approaches to support patient-provider communication and identified challenges for the design of systems that honor patient needs and preferences.Numerous technologies have been designed to improve patient-provider communication and enhance encounters both in and out of clinical settings [3,14,44,49]. Along with forums to outline opportunities for future work [49,50], the development of new patient-centered communication tools indicate a growing interest in supporting collaboration between patients and providers.…”

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“…In addition, the traditional power relationship between the physician, interventionist, or therapist with their patients is challenged with the use of technology. With the use of technology, there is a call to design an alignment between the concerns of the patients and the caregivers in order to address the issue of power relations with eHealth (Andersen, Bansler, Kensing, Moll, & Nielsen, 2014). But critically analyzing the practice of the physician, interventionist, or therapist is not a usual practice.…”

How do the design features of health hackathons contribute to participatory medicine?

“…Participatory design is a type of sociotechnical design that advocates involvement of users throughout the development process and whilst it has not been widely adopted in healthcare environments it is gaining currency (Andersen et al, 2014;Ballegaard, Hansen, & Kyng, 2008;Bowen et al, 2013;Cole-Lewis et al, 2016;De Silva, Burstein, Stranieri, Williams, & Rinehart, 2013;Teixeira, Saavedra, Ferreira, Santos, & IEEE, 2011). In a participatory medicine context, the inclusion of citizens in information systems design for self-care is becoming essential.…”

“…The heart of the analysis phase is requirements elicitation: this is critical in health applications where user acceptance and usability are key issues. In recent years there has been an emphasis on user-centric design (Andersen, Bansler, Kensing, Moll, & Nielsen, 2014;Pilemalm & Timpka, 2008). In health care, the users are typically identified as clinicians and others who work in health services (Bahlol Rahimi, Vimarlund, & Timpka, 2009).…”