The Destination

The Residence

Exploring the Role of Participatory Design in the Field of Health

Today´s healthcare system is undergoing perceptible changes as the system is facing a paradigm shift due to demographic changes, technological developments, increasing complexity, organisational changes, and demands on user involvement and participation.

The paradigm shift described by Rothmann et al. reflects the person-focused perspectives which are emerging in the healthcare sector.

The demographic and technological changes highlighted by Rothmann et al. have provided key impetus in the inception of the EAP. Research has indicated that the presence of an aging population within Australia is anticipated to place undue financial, institutional and service stress on Australia’s aged care sector. However, research has also indicated that “smart” technology has evolved to allow for the delivery of geriatric healthcare services to those aging within their homes - “in place”. Similarly, more and more individuals who are being classified as “elderly” (those over the age of 65 years) have increasingly heightened technological literacy and experience in interacting with modern technology. This has provided design research with a novel opportunity to develop healthcare products and services, utilising emerging technology, to be shared with those aging in place.

The user engagement described by Rothmann et al. refers to methods of co-design and participatory design which yield person-focused empirical data. By employing a human-centred approach when designing tools, services and systems, the authority between the supplier and receiver is challenged. This sees the role of end-users evolve from a scrutinised target audience to members of the research project who offer invaluable insight.

The aim of this workshop is to reflect on the challenges and dilemmas which are emerging when participatory design is used in Healthcare, because the epistemological, cultural, methodological assumptions of participatory design collide with the traditionally well-established science tradition, language, culture and biomedical approach in health science.

The ideological “collision” identified by Rothmann et al. highlights a key barrier to germinating systems of healthcare with interdisciplinary knowledge. As institutes and sectors of healthcare demonstrate risk-aversion when looking to enhance their methods of medical intervention, emerging, potentially-beneficial products and systems of care may be consequentially dismissed. Therefore, when developing the Close to Home design outcome, it was determined that developed artefact will take the form of an inconspicuous presence, which does not seek to challenge nor tamper with any other healthcare products or systems in place.

Rothmann et al. is theoretically exploring the potential to recreate the healthcare system, with a particularly focus on institutions and hospitals. Alike Rothmann et al., the Close to Home project seeks to regenerate the immediately “neglectful” healthcare system administered to elderly Australians. In commonality, both design revisions engage with methods of participatory design to develops a more compassionate, person-centred system of care.

New roles are emerging which means that the patient is no longer just a patient in the traditional way, but a partner, who make demands on involvement, and a partner who wants to have an influence on their own treatment and care.

Patients often report of meeting a paternalistic healthcare system… where the healthcare professionals practice unilateral authority over the patient… and where involvement is only shallow and superficial.

The emerging interest in providing healthcare end users with self-governance while receiving the highest quality of medical attention, highlights the timely emergence of the Close to Home project.

When critiquing the existing healthcare institutions with the speculative, person-focused system of care, a clear difference in the standard of patient self-actualisation is realised. While the traditional design of healthcare agencies focuses on providing efficient, universal care (which relies on an individual’s compliance for successful generalised administration), a participatory health systems speculates that the development of practices which are considerate to, and reflect the experiences of, people may provide patients with the most successful outcome. Within conventional healthcare establishments, a key challenge of elevating patients to become “partners” with healthcare provides is the imbalance in knowledge sharing. The disparity of information sharing, between the givers and receivers of care, has been imposed by healthcare professionals to see patients form a reliance on the provider of care to determine what is/will be in their best interest. This sees the potential risk of delivering inappropriate care, or appropriate treatment imposed in a traumatic way, increase significantly. However, the need for healthcare providers to make assumptions on behalf of patients is negated by involving end-users in the decision making process. This practice of care underpins the rationale for developing the Close to Home project into a “smart” healthcare tool which facilitates communication. The Close to Home system obstructs the oppression of elderly autonomy by providing “patients” (elderly individuals aging in place) with a direct line of contact to those who care for them (family/community members). This then allows for “patients” to become actively involved in realising and administering their healthcare plan.

Participatory design provides a critical stance in a well-established science tradition. participatory design and its methods is a highly productive research approach guiding the design of solutions to patient´s problems and changes to clinical practice.

Rothmann et al. offers a scholarly critique of, and alternative to, a healthcare operation of totalitarianism. However, Rothmann et al.’s belief that a participatory healthcare system eclipses traditional healthcare practices is unsubstantiated by the limited peer reviewed references included in their article. This then questions Rothmann et al.’s reliability as the author. Terminology, such as the describing of a participatory design as “highly productive”, may then be perceived as subjective and an unfounded.

A noted point of diversification between the Close to Home project and the participatory methodology described by Rothmann et al. is that the studio project seeks to “support”, not “solve”, the experiences of aging healthcare patients. While a participatory design methodology potions itself as a solution-orientated, catalyst of change, it is questioned whether the research methodology may too oppress those who find belonging in traditional systems of governance. For example, if a participatory research methodology was to guide the recreation of a healthcare system for elderly Australians, the changes that are enforced, while generated from authentic fellow user experiences, may be traumatic to individuals who are comfortable and familiar with the current system. Therefore, when designing the studio outcome for the Close to Home project, it was actively decided that the developed artefact should support and encourage a decision making dialogue between carers and patients, in comparison to enforcing a change of lifestyle upon those aging in place.

Thus, it is important to discuss the power between the participants in participatory design, and how power is managed (e.g. health professionals, patients and users).

Rothmann et al. highlights the importance of understanding and managing the power dynamics between the stakeholders of a healthcare system. The Close to Home project seeks to navigate the distribution of power through diversifying who the participants are that are engaged in healthcare dialogues and centralising decision-making on the autonomy of those aging in place. These theoretical aspects of the design have been conceptualised through studio practices. This has seen behaviour guiding features embedded into the design of the physical products and application features. Moving forward, I will continue to explore how my expansion of my theoretical knowledge may guide the studio work.

Critique of Proposed Workshop Format

This workshop is proposed to gather researchers, practitioners, the industry and others who work across international healthcare context and to share experiences on challenge and dilemmas occurring when participatory design is used in the field of health care.

Rothmann et al. engages with key stakeholders to gain an empirical understanding into how participatory design is experienced by those who are apart of the healthcare system.

When conducting research for the the Close to Home project, engagement with user experience sharing has yielded highly valuable, nuanced insight into the sentiments of those aging in place. By engaging individuals aging in place in colloquial dialogues regarding their real/anticipated experiences towards existing and speculative systems and products, their openness to investing in and utilising design outcomes may be realised. It is therefore proposed that previous aging in place resources, which have been generated with a disregard to the experiences of end-users, may contribute to the high rates of elderly service underutilisation within Australia.

We are asking for participant to submit an inspiration story describing challenges or dilemmas in relation to knowledge, power or participation in their use of participatory design in a healthcare setting.

Rothmann et al. seeks to facilitate the documentation of user experiences through an elective submission of personal accounts. While the value of storytelling has been realised through the Close to Home project, the level of workshop participation self-efficacy expected by the workshop facilitators is questioned. It is proposed that person-to-person interviews, which may see detsiled subtleties organically arise from conversation, may supplement the gathering of personal accounts.

Additionally, selective terminology such as “we” also alludes to the collective solution finding objective of the research workshop. When conducting the G.UTS workshop and engaging with project end-users, it will be ensured that similar inclusive language is utilised.

The outcome of the workshop will be the production of a map highlighting the challenges, the proposed visions and the possible solutions... The output will be a document describing the discussion on challenges. Furthermore, the paper will describe proposed visions and possible solutions.

The visual documentation of the data collected, proposed by Rothmann et al., is highly reflective outcome of the participatory design methodology which guiding the workshop. However, the “formalisation” of the outcome into a written document output reveals the autocratic expectations placed on the participatory design researchers by the academic field of health sciences. Furthermore, it undermines the validity of experimental and emerging methods of data collection, documentation and sharing. It is therefore suggested that a compromise of practices, to both the field of participatory design and healthcare research, is necessary for the interdisciplinary convergence of practices.

Within the context of the G.UTS exhibition, the dynamic relationship between generating an experimental workshop activity and documenting the rationale and outcome of the workshop will need to be considered.

Due to the format of the workshop places are limited. We are looking for participants who have experiences of undertaking participatory design work or research in the area of healthcare and health science.

By primarily engaging with experienced participants, Rothmann et al. risks the exclusion of “real” healthcare encounters, endured by those without biases towards participatory design or health science research. This therefore validates the aforementioned recommendation that the method of user experience collection by Rothmann et al. may need to be refined to better facilitate accessible storytelling.

Rothmann, M. J., D. B. Danbjørg, C. M. Jensen, and J. Clemensen. 2016. “Participatory Design in Health Care.” Proceedings of the 14th Participatory Design Conference: Short Papers, Interactive Exhibitions, Workshops - Volume 2. ACM. https://doi.org/10.1145/2948076.2948106.

Preparations for the G.UTS Workshop & Exhibition

Explorative material sourcing...