Ebook: Participatory Design & Health Information Technology

Designing Health Information Technology (HIT) is complex and calls for a range of activities to learn how best to provide technology support for future users and use situations. The importance of engaging end users like health professionals, patients and relatives in design processes is widely acknowledged. However, creating cooperative learning processes with future HIT users is not a simple task. Software is an abstract material, which challenges the involvement of non-professional designers. Participatory Design (PD) is the primary discipline for direct involvement of people in technology design. Since the 1970s PD researchers and professionals have established a broad repertoire of methods and techniques for PD within multiple domains in cooperation with a diversity of people. Exploring applications of PD in HIT is of value to researchers, health professionals, and designers involved in the endeavor of engaging end users in HIT design.

This book has contributions from renowned and experienced researchers from five countries, who share their experience and insight in conducting PD in their research and development of HIT. The book includes a review of PD and HIT research followed by 10 papers each providing a PD example and lessons learned of importance to future participatory HIT designers. All papers present a specific case of participatory HIT design, an extended argumentation and presentation of PD methods in relation to the presented health design case and lessons learned about PD in relation to HIT. The papers are organized in the following themes:

• Participatory Processes: This section includes three papers presenting long term PD processes of HIT development, implementation and appropriation.

• Participatory Reflections: This section includes two papers presenting critical analysis of PD processes related to HIT design and implementation.

• Participatory Business: This section includes two papers presenting business oriented PD with attention to PD of marketable HIT and effects-driven PD.

• Participatory Inspiration: This section presents three papers with participatory inspiration for HIT designers. The three papers present examples of multisite ethnography as a basis for HIT design; workshops with vulnerable participants for design of virtual rehabilitation; and transect walks as a first step in establishing participation for HIT design in neighborhoods.

The target audiences for the book are researchers, students, health professionals, and IT specialists who work with and/or are interested in supporting participation in design of HIT. The ambition is to inspire readers to conduct and reflect on participation in HIT design and further develop participatory approaches for design of future HIT.

Editors:

Anne Marie Kanstrup, Ann Bygholm, Pernille Bertelsen and Christian Nøhr

December, 2016

The landscape of Participatory Design (PD) of Health Information Technology (HIT) is diverse and constantly evolving. This paper reviews the publications in the proceedings from the Participatory Design Conferences (PDCs) that have been held every two years since 1990. We used the Matrix Method to identify, describe and synthesise HIT publications from the proceedings. A total of 47 papers were included in the review and analysed in relation to six themes. The analysis reveals a significant volume of HIT research at PDCs, with a large amount of attention to digitalisation of health information, work procedures, records, secondary healthcare and health professionals. However, the analysis also shows a development from a primary focus on health workers and hospitals to a recent attention on HIT in everyday life and PD with patients, relatives, neighbourhoods and citizens in general. Additionally, the review shows a growing number of PD methods being applied. This paper concludes that research on PD and HIT appears to be maturing and developing with ongoing technological and societal development.

The paper presents the case of developing, adapting, and implementing an electronic prehospital patient records system in Scandinavia. The system is now fully implemented and it is used by all stakeholders within the prehospital domain. The paper focuses on the participatory design process of adapting the technical solution specified in the call for tender with the complex organizational context of actors with very diverse tasks and objectives and situated in five different regions each with their special geographical and demographical challenges. The paper concludes by discussing a range of lessons learned when using PD within a commercial project (where the starting point is a fixed contract and requirements specification), with a very diverse set of stakeholders (users, customers, and indirect users), and in a very complex domain encompassing a range of highly specialized competencies.

This paper stresses the need for more research in the field of Participatory Design (PD) and in particular into how to design Health Information Technology (HIT) together with care providers and -receivers in multicultural settings. We contribute to this research by describing a case study, the ‘Health-Cultures’ project, in which we designed HIT for the context of home care of older people with a migration background. The Health-Cultures project is located in the city of Genk, Belgium, which is known for its multicultural population, formed by three historical migration waves of people coming to work in the nowadays closed coal mines. Via a PD approach, we studied existing means of dialogue and designed HIT that both care receivers and care providers in Genk can use in their daily exchanges between cultures in home care contexts. In discussing relevant literature as well as the results of this study, we point to the need and the ways of taking spatio-historical aspects of a specific healthcare situation into account in the PD of HIT to support multicultural perspectives on healthcare.

While much research emphasizes design-before-use, we here study design-in-use. The notion of participatory continuing design is introduced to draw attention to the ongoing work of incorporating information and communication technology into work processes in healthcare institutions. Through an empirical case study of how telemedicine, in the form of videoconferencing, was taken up in a rehabilitation hospital in Norway, the nature of such ongoing experimentation, learning, and redesign is described. When contrasted with traditional design-before-use practices, participatory continuing design differs in terms of its timing, object, process, outcome, and participants. We offer recommendations for how such processes can be supported in healthcare organizations.

In this paper we analyze the participatory design (PD) process of a health information technology (HIT) project. This project, AToM was situated in dementia care and involved partners from academia, industry and care. The analysis specifically focuses on the role of the care partners in the PD process. We will show that the conditions to enable ‘good participatory design’ were not fully met and we present a set of actions to prevent this in future HIT projects. Central to our recommended approach is placing the care partners at the centre of the PD project.

Design of Health Technology for elderly and care personnel has a high priority because of a severe increase of elderly citizens in need of health care combined with a decrease of resources in the health care sector. Desires for maintaining and improving the quality of care while reducing costs has resulted in a search for approaches that support co-operation between technology designers, elderly persons and health care professionals on innovating future care technology. Living laboratories, where areas of a care environment are transformed into a so-called platform for technology innovation, are popular. Expectations for living laboratories are high but examinations of how such laboratories support the intended participatory innovation are few. This paper presents and examines eight living laboratories set up in Danish nursing homes for technology innovation. We present the notion of a living laboratory and explicate the aspirations and expectations of this approach, and discuss why these expectations are hard to meet both on a general level and in the investigated labs. We question the basic assumptions of the possibility of reconciling the different interests of the stakeholders involved. In our analysis we focus on users in the living laboratories. We use guiding principles developed within Participatory Design to reveal the role and participation of the users – the health care professionals and the elderly – in the eight living laboratories. In general, these users played a minor role, in the labs where technical problems turned out to be main activity. We conclude that living laboratories do not nullify different/conflicting interests and that a real-life setting by itself is no guarantee for user participation.

This paper delves into the challenges of engaging patients, clinicians and industry stakeholders in the participatory design of an mHealth platform for patient-clinician collaboration. It follows the process from the development of a research prototype to a commercial software product. In particular, we draw attention to four major challenges of (a) aligning the different concerns of patients and clinicians, (b) designing according to clinical accountability, (c) ensuring commercial interest, and (d) dealing with regulatory constraints when prototyping safety critical health Information Technology. Using four illustrative cases, we discuss what these challenges entail and the implications they pose to Participatory Design. We conclude the paper by presenting lessons learned.

Participatory design (PD) can play an important role in obtaining benefits from healthcare information technologies, but we contend that to fulfil this role PD must incorporate feedback from real use of the technologies. In this paper we describe an effects-driven PD approach that revolves around a sustained focus on pursued effects and uses the experience sampling method (ESM) to collect real-use feedback. To illustrate the use of the method we analyze a case that involves the organizational implementation of electronic whiteboards at a Danish hospital to support the clinicians' intra- and interdepartmental coordination. The hospital aimed to reduce the number of phone calls involved in coordinating work because many phone calls were seen as unnecessary interruptions. To learn about the interruptions we introduced an app for capturing quantitative data and qualitative feedback about the phone calls. The investigation showed that the electronic whiteboards had little potential for reducing the number of phone calls at the operating ward. The combination of quantitative data and qualitative feedback worked both as a basis for aligning assumptions to data and showed ESM as an instrument for triggering in-situ reflection. The participant-driven design and redesign of the way data were captured by means of ESM is a central contribution to the understanding of how to conduct effects-driven PD.

Ethnography, with its emphasis on understanding activities where they occur, and its use of qualitative data gathering techniques rich in description, has a long tradition in Participatory Design (PD). Yet there are limited methodological insights in its application in developing countries. This paper proposes an ethnographically informed PD approach, which can be applied when designing Primary Healthcare Information Technology (PHIT). We use findings from a larger multidisciplinary project, Health Information Systems Project (HISP) to elaborate how ethnography can be used to facilitate participation of health practitioners in developing countries settings as well as indicating the importance of ethnographic approach to participatory Health Information Technology (HIT) designers. Furthermore, the paper discusses the pros and cons of using an ethnographic approach in designing HIT.

Research literature on participatory design in relation to people with communicative and cognitive disabilities often focuses on the challenges of communication among the participants. This paper presents a case study involving people suffering from communication disabilities after a brain injury (aphasia) early in a design process of an avatar-mediated virtual learning environment for rehabilitation. The example demonstrates how providing time and space and supporting the communication with well-suited tools and artefact opens for firth-hand domain knowledge of living with aphasia. The results demonstrate that participatory design methods might result in much more than just being a step in the design process. In this specific case, it turns out to be a tool to engage, involve, and empower people with communication disabilities to interact and communicate. The paper argues, that participatory design is a way for designers to gain insights into what people with aphasia really want and, consequently, might also be a key to redesign rehabilitation for people with communication disabilities.

This paper explores participatory design walks (PD walks) as a first step toward a participatory design of health information technology (HIT) aimed at tackling health inequality in a neighbourhood identified as a high-risk health area. Existing research shows that traditional methods for health promotion, such as campaigns and teaching, have little to no effect in high-risk health areas. Rather, initiatives must be locally anchored – integrated into the local culture, and based on social relationships and group activities. This paper explains how we conducted PD walks with residents and community workers in the neighbourhood and how this participatory approach supported a first step toward HIT design that tackles health inequality. This is important, as people in neighbourhoods with high health risks are not the target audience for the health technology innovation currently taking place despite the fact that this group suffers the most from health inequality and weigh most on the public healthcare services and costs. The study identifies social and cultural aspects that influence everyday health management and presents how a citizen-driven approach like PD walks, can contribute valuable insights for design of HIT. The paper provides concrete methodological recommendations on how to conduct PD walks that are valuable to HIT designers and developers who aim to do PD with neighbourhoods.