Abstract
Healthcare systems require a paradigm shift in the way healthcare services are delivered to counteract demographic changes in patient populations, expanding technological developments and the increasing complexity of healthcare. Participatory design (PD) is a methodology that promotes the participation of users in the design process of potential telehealth applications. A PD project can be divided into four phases including: the identification and analysis of participant needs; the generation of ideas and development of prototypes; testing and further development of prototypes; and evaluation. PD is an iterative process where each phase is planned by reflecting on the results from the previous phase with respect to the participants’ contribution. Key activities of a PD project include: fieldwork; literature reviewing; and development and testing. All activities must be applied with a participatory mindset that will ensure genuine participation throughout the project. Challenges associated with the use of PD include: the time required to properly engage with participants; language and culture barriers amongst participants; the selection of participants to ensure good representation of the user group; and empowerment. PD is an important process, which is complemented by other evaluation strategies that assess organisational requirements, clinical safety, and clinical and cost effectiveness. PD is a methodology which encourages genuine involvement, where participants have an opportunity to identify practical problems and to design and test technology. The process engages participants in storytelling, future planning and design. PD is a multifaceted assessment tool that helps explore more accurately clinical requirements and patient perspectives in telehealth.
Introduction
In response to demographic changes in patient populations, expanding technological developments and the increasing complexity of healthcare, it is inevitable that healthcare systems require a paradigm shift in the manner in which health services are delivered. The paradigm shift also needs to consider the evolving clinician–patient relationship, where patients are better informed, more autonomous and more actively involved in healthcare decisions.
Due largely to consumer-end technologies a patient is now seen as a partner and a user who will demand involvement and influence in their interactions with the healthcare system.1,2 In this context, the patient expects to have diverse technologies that enable them to continue living in their own home and be more informed and engaged in their own health. 1 Thus, it becomes fundamental to reorganise the way we offer healthcare services to accommodate this expectation. Participatory design (PD) is a methodology that promotes the participation of users in the design process of technological solutions. 3 Therefore, it has a potential for designing technologies that more closely align with the needs of the users.4–7
The aim of this paper is to describe the process and theoretical framework of a PD project and demonstrate its relevance to telemedicine research. In addition, we describe various PD methods which may assist with the identification of user needs and generate ideas for the planning of telehealth and health services in general.
Historical perspective
PD originated in the 1970s, when Scandinavian researchers conducted action research to analyse the effects of new information technology at their workplaces. The results showed that the workers had little influence on their own working conditions. 8 The researchers then engaged with the workers and their unions to build up technical and organisational competence so workers could gain/regain their democratic rights of co-determination on their working situation. 9
Hence, PD has its roots in action research, which can be characterised as a research method that explicitly points to changes in the investigated field. The common characteristic of action researchers is the collaborative relationship between the researcher and the participants and the collaborative undertaking of the research, where research is done together with the participants.
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Action research goes back 70 years. It has its origins within social science. Psychologist Kurt Lewin (1890–1947) was one of the first to coin the term action research: The research needed for social practice can best be characterized as research for social management or social engineering. It is a type of action research, a comparative research on the conditions and effects of various forms of social action, and research leading to social action.
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Conducting a participatory design (PD) project
Participation
Participation is the heart of PD. 13 The term design is used in the same way as in architecture; that is, with a focus on the analysis of needs and opportunities and the design of functionalities. 14
Participation of the intended users is seen as one of the most important aspects of good design as people actively participate in shaping the world around them. They take an active part in the exploration of needs and possibilities and in the design and prototyping, as well as the organisational implementation. 15
Robertson and Simonsen defined genuine participation as: ‘the fundamental transcendence of the users’ role from being merely informants to being legitimate and acknowledged participants in the design process’. 16 The transformation from informant to participant is established when the participants are not just answering questions in an interview about their point of view, but are asked to actively participate. For example, Danbjørg established a project group comprising nurses, midwives and new parents to investigate how postnatal mothers and families could be better supported after discharge from hospital. The result was the design and development of a new app which delivered a range of learning resources on a specific topic to families in need. 17
Rationales for participation
Genuine participation differs from other traditions such as user-centred design, contextual design and user-driven innovation.18,19 There are different rationales for involving users in a design project. For example, the rationale can be pragmatic, where the purpose is to design better products, or it can be ethical or political, where the rationale is the users have a right to be involved. Furthermore, it can be theoretical or philosophic, where participation is fundamental to understand and learn from each other (both the researcher who participates in the users’ life and the user who genuinely participates in the design process). This includes access to information and the power to influence decisions.18–21 It is a mutual learning process, and can be viewed as ‘a complex process that combines doing, talking, thinking, feeling and belonging’. 22
PD is an emancipatory approach and can be seen as a critical response to the approaches that only involve users as informants through interviews, focus groups or other one way techniques that are controlled by the researcher. 18 PD gives voice to those who are not in positions of power and decision-making. This is emphasised by Danbjørg, where the argument for participation was political and the intention was to give the participants the opportunity to contribute to the shaping of their future practice. In that study, a new policy of early hospital discharge had been decided despite objections from healthcare professionals. Engaging them in a design process gave them a voice at a time when they felt ignored by the establishment. 17
Processes and activities
The use of PD in telehealth research is an iterative process which involves the clarification of user needs, possible solutions and practical trials involving the participants. Once implemented into practice, then formal evaluation should proceed. The phases include:
Practical methods used in PD studies
The use of PD helps to articulate the specifics of a clinical problem; that is, What is the problem? Why is it a problem? and What could be done to resolve the problem? PD helps avoid the mistake of taking a technology, then looking for a clinical problem – a common mistake in telemedicine research. 23 Genuine engagement provides all participants the opportunity to contribute to the planning process. PD enables researchers to be clear about the issues before any technical solution is considered. Thus, the pragmatic rationale for participation is to design solutions that actually solve practical problems in conjunction with the people who experience them. This was the starting point of action research. 11
Key activities of a PD project include: fieldwork; literature reviewing; development; and, finally, testing in a clinical pilot study. The pilot study was added to the PD process (in computer science) by Clemensen where the study had a starting point in health science and clinical practice.
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For each of these activities, various methods are applied throughout the phases of a PD project to enhance user participation. These may be categorised under the headings of telling, making and acting (see Figure 1).
Methods used for a participatory design project.
Telling
Telling activities can be drivers for participation, where practitioners are given a chance to share their knowledge. Interviews 24 or personas 25 can facilitate participants to express their needs and experiences. Kwon et al. demonstrated how the use of personas with less realistic self-representation provided a platform for more self-disclosure. The study revealed that personas are an effective design tool to engage users in sensitive topics. 25 Another example of telling is fieldwork, such as participant observation and interviews,26–28 which involves the researcher participating in the everyday life of the participants in order to get to know their practice and identify their needs. 3 Furthermore, Literature studies are often conducted as another way to understand the needs of the participants. Nilsson et al. 29 conducted a meta-synthesis of the literature to supplement the needs identified in the clinical setting.
Making
The making of things can be a means of design participation, where tools allow the ability to create. We use our hands for expressing thoughts and ideas in the form of artefacts, which can describe future objects. For example, user activities such as creative workshops are conducted to generate ideas for possible solutions. This is demonstrated by Clemensen et al. 30 using cooperative methods in developing health technology. They applied PD to determine how people with diabetic foot ulcers could be treated effectively at home by using telehealth which allowed a visiting nurse in the community and an expert located in a hospital to communicate. In the study, they used different creative workshops 31 and dilemma games 32 which generated active involvement from the participants through interaction. The outcome was ideas suitable for further exploration.
Acting
Acting out possible future scenarios can increase participation as people explore how new designs could affect practice. 13 This was shown by Clemensen who conducted experiments to explore how the designs would affect and change practice. 3 They tested ideas in the laboratories at the computer science department, where a flexible home setting and a hospital setting in two adjacent rooms had been created. This made it possible to make quick adjustments to the prototypes and to evaluate new ideas on the spot. As the process progressed, questions arose about how this process could be introduced into clinical practice.
Different methods can be applied in the development phase to ensure continued user participation. In the study of Danbjørg et al. 33 user stories were applied. 34 The scenarios in user stories help to visualise the specific application of a proposed information technology solution; that is, the users can imagine what the solution will be like – this can ensure that their ideas for design are actually realised in the developed prototype. A participatory mindset can also be applied in the technological creation with the use of a participatory framework such a scrum, which is a flexible development strategy that is done in close cooperation with the participants. 35 The content, format and style of the app were designed on the basis of the parents’ identified needs, in close cooperation with the nurses on the postnatal ward, and with the assistance of a team of computer programmers. The app contains a chat function, a knowledge base and automated messages.
The technology is not only created, but also trialled in real-life experiments. Both Clemensen et al. and Danbjørg et al. tested technologies in a telehealth setting between the home and hospital.7,30,33 Danbjørg et al. tested the developed app in a pilot with 10 new families. Then the app was tested more thoroughly in an intervention involving the postnatal ward and 26 new families in their homes.
All telehealth applications should be subject to formal evaluation, irrespective of maturity and stage of development. Specific areas of evaluation should examine the clinical, economic, organisational and socio-ethical issues related to the use of telemedicine. 36
Challenges associated with a PD project
When applying PD, it is important to ensure that the methods and user activities fully engage the participants. PD methods are relatively time consuming and demanding. Genuine participation takes time, both for the researcher and the participants. Kujala 37 and Danbjørg 17 both reported it was difficult to engage healthcare professionals in workshops due to time constraints. Time and staff resource allocation is important, especially when the aim of the study is to encourage participation from all levels within the organisation. 38
Reducing the participant to an informant is a potential risk in a paternalistic healthcare system, which is a remnant from the past, where there traditionally is little room for the patient’s wishes, 39 and where involvement is only superficial. This highlights the importance of understanding the conditions and consequences of including users in designing technology, as well as the selection of the proper methods for genuine participation;13,21 otherwise the participation will not be genuine.
Furthermore, patient's experiences and knowledge do not have power and high value in a biomedical, pathogenic culture. PD provides a critical stance in a well-established science tradition. With its focus on patients and users – participation is a core element 6 – PD and its methods is a highly productive research approach guiding the design of solutions to patient’s problems and changes to clinical practice.7–9
The challenges associated with PD when applied in different healthcare systems and settings include the existing power distributions, language and culture among those who work there, where involvement is nothing near the genuine participation that characterises PD. Kushniruk and Nøhr emphasise the issue of how representative the participants are. This is of relevance when designing large-scale interventions. PD grew out of critique of how little influence the workers had at their work place, and was a way to ensure democracy and influence locally at the workplace. This can be difficult or almost impossible to ensure when technological solutions are designed to be applied in the healthcare system with thousands of users. 19 This is why we argue that the literature search is ongoing and essential for a PD project, and why it becomes essential to conduct a careful assessment of the effects of the technology.
This is in line with Pilemalm and Timpka who have discussed the need for a third generation of PD in healthcare, which should involve elements of usability-testing studies with a large number of participants, alongside the traditional PD processes with smaller groups of participants. 40
General recommendations
Principles that reflect active and genuine participation must guide the PD process. Inspired by the literature and our experiences with PD, we highlight the following recommendations:
Give everyone a voice by creating a room for visions. The different participatory tools described are recommended as methods for ensuring everyone is given a voice. In telemedicine research this should include healthcare staff, patients and their relatives, better balancing the power relations that exist within the healthcare system. Understand and participate in the clinical practice. Work with the participants in their practice (clinical practice/workplace/home) to better understand actions and technologies in the actual setting. Create a learning environment for everyone. Enhance the understanding of the different actors in the project by finding common ground. Technical experts, the researchers and the users then have a chance to learn from each other. Find a mutual language. Make it possible with the use of the different tools and techniques for everyone, including researchers, patients, designers and people with technical expertise, to understand each other.
Ethical considerations
Another aspect to consider is when the participant is also a patient. This raises the ethical question of disturbing participants in difficult circumstances. Respect for the participants must be the researcher’s first consideration, ensuring that taking part in the research does not harm them. This consideration takes precedence over the objective of creating new knowledge and technologies.24,41 The goal of PD is to transform practice together with the participants in a way that reflects the participants’ ideas. An important consideration is that projects may not always lead to the desired changes, and this must be communicated with the participants so they do not get disillusioned.
Conclusion
PD offers participants a chance to identify practical problems and to design and test technology. A variety of methods are used to ensure participants are genuinely involved. PD is an important process, which is complemented by other evaluation strategies that assess organisational requirements, clinical safety, and clinical and cost effectiveness. PD is a methodology which encourages genuine involvement, where participants have an opportunity to identify practical problems and to design and test technology. The process engages participants in storytelling, future planning and design. PD is a multifaceted assessment tool that helps explore more accurately clinical requirements and patient perspectives in telehealth.
Footnotes
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Centre of Research Excellence in Telehealth funded by the National Health and Medical Research Council (NHMRC; grant number APP1061183).