Building capacity for engaged research

Talking about co-design and stakeholder engagement is one thing. Knowing how to do it is another. While organisations and universities like to make engagement central to their work, institutional practices are not keeping pace. Institutional policies, publishing pressures, and additional time needed stand in the way. Building capacity for engaged research is more than knowing how to run a focus group.

Engaged research embeds stakeholder views throughout the life of the research project. It encourages creation, and active collaboration with policy makers, practitioners and communities.

Graphic of seven human figures wearing casual clothing standing up from their chairs and looking upwards to the camera. Building research capacity.

A workshop was held mid 2024 to bring together research leaders with hands-on experiences. These are people who are keen to see their research improve things for society and individuals. They see this as a timely opportunity for key people to coordinate their efforts. The result is a large volume published by the National Academies Press containing the workshop discussions and ideas.

Partnering with communities, policy makers and others is challenging. Measuring the impact of such research requires a suitable evaluation system.

graphic of a bar graph with columns of different colours at different heights.

The book of proceedings has 8 chapters:

  • Introduction
  • Importance of engaged researach
  • Challenges and solutions: synthesising two landscape reviews
  • Promising approaches for addressing key tensions in community engaged research
  • Aligning mission and incentives: valuing and prioritizing engaged research
  • Valuing diverse forms of expertise
  • Aligning core values and measurements
  • Next steps for action

The title of the publication is, Building Institutional Capacity for Engaged Research. You can read free online. Note this is an academic text with long sentences.

From the introduction

The complex challenges facing society today call for new ways of doing research that bring researchers, policy makers, community leaders and members, industry stakeholders, and others together. The aim is to identify evidence needs, contribute different kinds of knowledge and expertise, and use evidence to accomplish shared goals.

Although momentum is building toward a research enterprise that more routinely enables and rewards this type of collaboration, the development of institutional capacities to support diverse forms of engaged research have not kept pace with the need for them.

Remote focus groups for inclusive design

Asking mobility device users to come to a focus group or co-design event about transport tells the story of inaccessibility immediately. They need transport to get there. Even when it is possible, it is more inconvenient, difficult, and time consuming than for other transport users. So remote focus groups offer a solution.

The objective of the study was to pilot test an inclusive design approach to obtain information from users often excluded in the design process due to transportation challenges.

Two screens on a desk. One is showing pictures of several people on a video conference. The other is displaying a regular web page.

The remote focus group participants were users of wheeled mobility devices. The researchers devised a method that worked for users and for the research study. Nine users were each asked to participate in one of two different focus group sessions. One discussed 1 to 7 passenger vehicle transportation systems. The other discussed 8 to 12 passenger vehicle transportation systems. Each participant attended two sessions making four sessions in total.

Each participant was visible on Zoom in the same way as they would in a face to face discussion. However, being remote, they could remain anonymous by using a nickname or a fictitious name. This personalised the sessions and encouraged users to contribute. Video demonstrations of small (1-7 passengers) and midsized (8-12 passengers) vehicles were shown to users.

The researchers asked user’s preferences about various elements of the journey. They included planning, vehicle identification, boarding and alighting, and riding location.

Stable online connections are a must

All participants had access to the technology, but sometimes lack of robust connections happened through the sessions for some participants. This is a potential barrier for individuals who lack sufficient access to the necessary technology.

A young female at a desk with laptop, coffee cup and notebook. She is concentrating on the screen.

The researchers conclude that well-designed remote focus groups provide a powerful tool for inclusive and qualitative research. However, there is room to refine the methodology so that participation and data quality are improved.

The title of the article is Use of Remote Focus Groups to Improve Inclusive Design Practice.

From the abstract

This study examines the use of remote focus groups to obtain user’s ideas on wheeled mobility devices and Shared Autonomous Vehicles (SAVs). Inclusive design is essential for accessible transportation. Over four virtual sessions we collected statements from nine wheeled mobility device users. They told us about their design preferences, needs, and challenges with SAVs.

The findings highlighted the diverse needs and preferences of participants. This emphasises the importance of collecting information from users early in the design process. Well-planned remote focus groups can be an effective tool to gather design information from user populations that face transportation barriers.

Shared driverless vehicle design

A related research paper from the Intelligent Mobility Design Centre in the UK looks at engaging users in the design process. The key issue of the study is the preparedness to share vehicles on a broad scale.

The title is, Design for shared driverless vehicles of the future.

Abstract

On-demand shared transportation is a major new mobility innovation and potentially the main mode of transport in coming decades. Studies show that driverless vehicles have potential to accelerate uptake of shared vehicles at scale. People perceive sharing positively but do not necessarily translate perception into action, with desire for personal space a major reason for unwillingness to share vehicles.

Design research is a powerful tool when creating methods and processes to anticipate future possibilities by visualising detailed features of proposed products. We present a set of design research methods engaging end users in a variety of empathy activities and a design process to translate their needs into visual concepts for future shared driverless vehicles that are attractive and more likely to be adopted.

Co-designing with young people

Student voices are important in the design of health and wellbeing infrastructure. Being young does not automatically mean being fit and healthy especially in low socio-economic areas. The ability to share public space and support services is essential to wellbeing at any age. Co-designing with young people provides opportunities to include their perspectives.

Infrastructure development is increasingly being used as a way to support the wide-ranging health and wellbeing needs of target communities. But few projects directly involve children and young people with other stakeholders as key contributors to decision-making.

Four children are in an open space with buildings in the background. They are jumping in the air and holding hands.

Children and young people have increasingly complex health and wellbeing needs and there are insufficient spaces and services to meet demand. Researchers at Queensland University of Technology tackle this issue by involving children and young people in the design of a wellbeing infrastructure project.

Place-based approaches refer to connecting infrastructure decision-making with the needs of a local community. It takes a cross-sectoral view of the interrelated infrastructure and amenity needs of a place, and identifies how these should be delivered.

A group of young men and women are standing together outside a coffee shop. They are wearing warm clothes and holding mobile phones.

Community hubs

Community hubs are typically multipurpose places that often include health and other community services. In most cases this is both appropriate and cost-efficient. However, few projects directly involve children and young people in the design process.

The research project involved high school students, teachers and other stakeholders in designing a new community hub. This hub is to be co-located at a high school in a community with high health and wellbeing needs.

Co-design and participation

Inclusive co-design with and for children and young people requires support to participate and keep them interested. There are four key factors: Space, Voice, Audience, and Influence:

  • Provide safe and inclusive spaces for views to be expressed
  • Give support and information for expressing views
  • Those in authority must listen to the views shared
  • Views must be taken seriously and acted upon by those with the power to influence or make decisions.
A work table is filled with paper and folders and a woman is cutting a piece of paper with scissors. It looks like a group of people are working on a design.

The article outlines the methods and provides illustrative examples of the students’ views and ideas. Feeling connected to the space was the overarching concept agreed by all stakeholder groups. The diagram taken from the research paper shows the four functions of the hub: community, health, social, and preventative health.

A diagram from the paper. It has four overlapping ovals with a fifth in the centre labelled as The Hub. The others are community function, Health Service Function, Social Function, and Preventative Health Function.

The co-design process revealed the essential nature of the social function – something not previously considered by the organisations involved. The process also provided an opportunity to “flesh out” what the social function might entail.

The title is, Co-designing place-based co-located health and wellbeing infrastructure and services with high school students, educators, and health service providers.

From the abstract

This research involved working with high school students, teachers, Guidance officers/School Counsellors, and other stakeholders. The project involved co-designing a new Community Hub co-located at a high school in a high-priority community .

We describe the co-design processes for engaging children and young people and adult stakeholders in the ideation and design phase of infrastructure and service development. The object is to support the health and wellbeing of a high priority community with high health needs.

The key insights pointed a way forward for the next stages of infrastructure and service delivery development. it also led to the development of several visual depictions of the complexities of stakeholder interests. Meaningful engagement of potential future users of place-based integrated health and wellbeing services enables responsive infrastructure designs that meet future needs of both target communities and service providers.

Young people and co-design

Two male adolescents sit on the kerb looking at the phones. Young people.

The views and experiences of young people are often left on the sidelines. Yet they have most to lose or gain in the way society evolves.  So perhaps they should be the ones to craft strategies and approaches for creating the futures they want. Co-design methods are clearly the way to get young people participating in social change processes in their local area. 

A study focusing on young people creating social change using co-creation techniques provides some useful insights. The aim of the researcher’s exploratory framework was to capture the explicit and implicit aspirations of young individuals. This approach also serves to increase our understanding of how to engage with young people. 

The paper explains the methodology of ‘now-wow-how’ phases. This method was selected for accessibility and relevance in facilitating conversations with people unfamiliar with design skills. The co-design process used different tools at different stages. 

A section of the paper is devoted to a critical reflection on what could have worked better. For example the author feels the school-based venue potentially limited explorative inquiries. 

The study showed that exploratory co-creative sessions with young people can yield innovative insights to inform more direct change.  Such sessions require tools that resonate with young peoples’ experiences while also stimulating both critical and creative thinking.

This paper provides details of the project’s structure, methodologies, and outcomes. In so doing, it provides insights into the processes of co-creation within community development and the empowerment of youth.

The title of the article is Young 2.0: advancing an inclusive framework for co-creating futures with youth.

From the abstract

This study presents an inclusive research approach aimed at cultivating inclusivity and co-creating future living environments that resonate with young peoples’ needs and aspirations.

Through co-creative activities, the project captured insights into the lived experiences and future ambitions of young participants. The findings identify some of the entrenched norms and activities that spurred empathy and inclusive thinking through making and enactment.

The project contributes to the initiatives, strategies and methods for young people to shape the future of their hometown. The ‘Young 2.0’ project serves as a microcosm of the potential inherent in co-design to serve as a conduit for youth to express and enact their visions for a more inclusive society.

Participation and co-creation in healthcare

A special issue on co-creation in healthcare research has several related open access articles. The first is Practices of Participation and Co-Creation in Healthcare: A Workshop Report.

Abstract

Participatory research in the health sector is fraught with obstacles. In particular, choosing appropriate methods to involve the heterogeneous stakeholders in the health system can be difficult. Not only are time constraints and hierarchies between professional (and non-professional) healthcare actors a challenge, but also dealing with patients who may have different physical and psychological limitations.

Accordingly, not all qualitative methods are applicable to all stakeholder groups. Limitations such as speech or visual impairments can make it difficult to participate in focus groups or design workshops. With a workshop at the European Conference on Computer-Supported Cooperative Work in 2024, we discussed experiences and lessons learned with participatory methods in the health sector. The workshop showed how different challenges were dealt with and thus opened up a space for reflection on participatory projects.

Other articles in this issue look at using visual metaphors, ideation, and challenges in participation of vulnerable groups in design processes.

Co-design and citizen science

Co-design is a term that emerged in the field of accessible and inclusive design. But co-design methods have been around for a long time in one form or another. Academics will recognise this as Participatory Action Research. Citizen science is a version of co-design that has its roots in environmental monitoring. This method is now used in urban planning and design.

Co-design and citizen science have similar principles. The common theme is being inclusive – that the people affected by design decisions help to shape them.

Older people sit at round tables discussing questions. There are four round tables shown in this picture. Citizen science.

Is citizen science the same as co-design?

Citizen science, participatory action research, and co-design methods are all basically the same, but have roots in different disciplines.

Co-design strategies vary according to the context and complexity of the project as do citizen science projects. The Fifth Estate has an article that discusses citizen science as a method of community engagement in planning. It explains citizen science as a type of research that actively involves members of the public in the research process. Regardless, it makes sense to involve users in the process of the design. This is something the universal design movement has been advocating for some time. 

“Citizen science has a long history in conservation and environmental monitoring, but has grown in momentum in recent years across a range of disciplines, including planning and urban design.”

A cityscape with a foreground of parkland and woodland.

Walkability in Tasmania

A citizen science approach was used in Tasmania. Residents audited the the local environment for barriers to walking. They identified priorities by using a walkability assessment tool taking photos, and participating in workshops. The information gathered was not only useful at a local level, but at state and national levels as well. 

“Our use of citizen science is enabling researchers, policy makers and community members to work together to generate data and establish priorities to support walkability that reflects community needs.”

A person with a back pack stands at the end of a boardwalk and is overlooking a lake nestled between mountains in Tasmania.

The article concludes that community engagement in planning is hard to do well. However, citizen science and customised technology are useful tools to shape urban design based on resident experiences. The title of the article is, Using citizen science to bring people back into planning walkable and healthy places. There is a link to more resources from Communities 4 Walkability. 

Doing citizen design science

Citizen design science is a synthesis of citizen science and design science that uses a bottom-up approach. The transformation of a car park into a multifunctional public space is the subject of a citizen science paper from Turkey. The authors explain the project and how they went about engaging with citizens. The co-design process relies on communication between designers, residents, visitors and the local authority.

An additional outcome of the project was to establish a Citizen Participation Unit within the municipal authority to facilitate citizen coordination.

Graphic depiction of the Citizen Design Science framework.

A key element of successful co-design is finding ways to design with non-designers through every stage of the project. Establishing a common language is essential for understanding the needs and thoughts of all participants. The authors break down the process into three parts:

  • Citizen science – type of data collected from participation
  • Citizen design – citizens actively design
  • Design science – translation of citizens’ ideas into designs by expert designers

The study showed that people without prior design knowledge are able to work constructively with professional designers.

Four photos here. Top two show three dimensional modeling of concepts. Two bottom photos show people sitting at tables outdoors discussing designs.

The title of the paper is, Co-Design of a Public Space and the Implementation: Atakent (Car) Park. The paper has several illustrations of the project.

From the abstract

Citizen Design Science is a co-design strategy for urban and architectural systems that uses design tools for citizens’ observation, experience, and local knowledge. The strategy improves the planning, design, and management of cities, urban habitats, and architectural structures.

This study is about the transformation of Atakent Car Park Area into a public space using a co-design process. Using design science data, two conceptual urban design projects were prepared. This included 178 local citizens’ wishes, needs, and suggestions about the area. Participating citizens were asked to vote for their preferred project and the selected conceptual design was implemented. Laypersons without prior design knowledge were able to establish a common language with a professional designer.

Age-friendly green space by citizen science

In many cities at least a quarter of the population will be over the age of 65 years by 2030. Adelaide in South Australia has one of the oldest populations at 37% over the age of 50. So this is a good place to run a citizen science pilot with older residents.

The method involved the use of smart phones to collect data, and the development of audit tools. The participants were encouraged to go about their daily lives so that the data reflected their natural life.

A line of street trees line the roadway.

While the data were not the main focus of the project, several important design elements emerged. In order of importance they were: seating, street trees, natural bushland, park trees and lakes/river/ocean. The researchers noted that public green spaces in local neighbourhoods may be seen as “green corridors” – a conduit to everyday life rather than destinations in themselves. They conclude that citizen science methods are a good way to implement age-friendly urban design at a detailed level. 

The title of the paper is Using Citizen Science to Explore Neighbourhood Influences on Ageing Well: Pilot Project.

From the abstract

The quality of public green spaces is mostly measured through expert assessments by planners, designers and developers. A disadvantage of this expert-determined approach is that it often does not consider the appraisals or perceptions of residents. Daily experience, often over long periods of time, means older residents have acquired insider knowledge of their neighbourhood, and thus, may be more qualified to assess these spaces, including measuring what makes a valued or quality public green space.

Age-friendly university with citizen science

And a university campus provides a neat environment for a case study. Researchers at the University of Manitoba went about examining the age-friendliness of their campus using specific citizen science techniques. This is all documented in their article, Exploring University Age-Friendliness Using Collaborative Citizen Science.

The main aim was to test the method, but the data collected were useful as well. The data revealed physical accessibility, signage, and transportation as being the most important for improving overall age-friendliness. 

The University of Manitoba is a grand university building.

The age-friendly university initiative began in Ireland at the Dublin City University and has turned into a global network. Academic institutions looking to complete assessments of their age-friendliness, particularly those exploring physical barriers and supports, could benefit from incorporating older citizen scientists into the process of collecting, analyzing, and mobilizing findings. You can read more about this global movement in a Forbes article.   

Young people and digital exclusion

Much is discussed about older people and digital exclusion, but this ageist thinking leaves young people out of the discussion. Hence the stereotype of young people being more digitally literate than older cohorts. Not all young people or older people are all the same. Often they have more in common than not. Access to digital devices and digital news and information is a problem for both groups. It just depends on the individual, their background, culture, education and experiences, not their age.

The challenge is to consider young people’s diverse backgrounds in digital design. Digital exclusion restricts social and democratic participation.

Two male adolescents sit on the kerb looking at the phones. Young people and digital exclusion.

A literature review by three researchers in Portugal offer some insights and challenges to the digital media world. Digital media play an important role in young people’s development and learning processes. However, not all young people are the same and some media can also become sources of exclusion.

Gender, race, and socioeconomics intersect

Gender, race, and socioeconomic, cultural, and educational backgrounds intersect and interact leading to compound disadvantages. Too often younger people are seen as well-equipped to consume digital media without considering diversity. Not all young people have attributes that make them more tech-capable. But what is more important is how young people engage with media and how they connect with the world.

Links between young people, news and citizenship

The researchers focused on studies that link young people, news, and their digital citizenship. We need to know more about how young people think, behave and feel, and what they expect from news. Access to news is essential for understanding and participating in democracies. It is part of the quest for enhancing inclusive citizenship.

Researchers suggest there is an “academic urgency to study, both quantitatively and qualitatively, young people and their diversity profiles in media consumption and production in their daily contexts…”

A young woman sits at a desk with her laptop open. She has her face covered by her hands and is indicating distress

Social and digital exclusion affects each individual’s life and social connection. Stigmatisation, and the gap between those with access to technology and education and those who lack digital citizenship competencies, is evident.

There is an urgent need for research to consider the particularities of the individuals who make up groups rather than focusing on assumed similarities. Diversity is broad and challenging, but focusing on it contributes to understanding the cultural, social, and ideological forces that shape society, its groups, and individuals. We are each all the better for understanding each other.

The title of the article is, Young People’s Diversity and Digital Media: A Systematic
Review (2010–2022)
.

From the abstract

YouNDigital aims to study youth, their engagement with news, and digital citizenship dynamics. One of the core elements of the project is a digital newsroom, a space for meeting and exploring digital citizenship and news, considering the significant disparities that characterise individuals in this group.

To better understand the target groups and to support the decisions regarding the development of the youth‐led digital newsroom, the research team carried out a systematic literature review focused on youth, digital citizenship, diversity, and different methodological approaches.

We explore the outcomes of the systematic literature review, and delve into the data gathered in one of the subclusters (Diversities). Findings underscore the challenges of inclusivity and diversity. There is a need for tailored media and digital literacy interventions that consider cultural differences, socioeconomic factors, and evolving technological landscapes.

There are difficulties, as well as the positive results, in using digital tools and strategies to trigger learning and motivational processes for diverse audiences. Digital tools that rely on media creation, creativity, critical thinking, and collaboration can promote the empowerment and inclusion of youth from distinct backgrounds, bridging the gap between their realities and citizenship experiences.

The findings point out that involvement in collaborative, immersive, and participatory processes anchored on sustained literature review processes can encourage distancing preconceptions while bringing them closer to research participants. The article contributes to discussions regarding the potential and the challenges of considering youth’s diverse backgrounds through pillars such as co‐creation or inclusive design. Mitigating youth social and digital exclusion to enhance democratic participation is an urgent matter.

Co-designing policy change

England, in post-Brexit mode, has taken a bold step in assessing the practicalities of co-design for broad policy change. However, national policy making systems are not structured for such a democratic process. Consequently, co-designing policy is a new challenge for the civil service. So this study of co-design for Environmental Land Management schemes is an important policy step forward.

Analysis revealed a mismatch between the principles and practices of environmental land management and co-design.

Policy co-design requires changes in government institutional cultures and practices.

A man in a checked shirt and a cap is standing in a bare field with a tractor in the background. He looks like a man on the land - a farmer.

This example of co-design processes is both broad and complex. The policy is about phasing out direct payments made to farmers and land managers. It’s also about creating a different system that aligns with other policy goals such as zero carbon emissions.

The Government’s co-design policy puts the responsibility on policy makers to be open to new ideas and ways of working. However, open policy making across the public services is not well defined. It seems the concept of open policy making has failed its commitment to less powerful groups. Indeed, it has given rise to involving the private sector elite experts.

Some of this failure is due to budget cuts across the public sector. Experienced staff were lost and then replaced with “experts”. Consequently, staff prefer the old consultation methods which are quicker and cheaper to run. Co-design methods, when done well, take more time and resources.

Three of the key challenges were:

  • lack of shared decision making in empowering stakeholders
  • confidentiality requirements causing barriers
  • insufficient transparency in how stakeholder views were used, or not
An aerial view of a farm with hedged square fields of green grass. One field has sheep grazing. There are three buildings with grey roofs.

Co-design for long term objectives

This important study highlights the need for ongoing commitment to long term policy development using co-design methods. It also highlights the importance of co-design for longer term objectives that need culture change to be effective. Without culture change the sustainability of the scheme or policy will be compromised.

The title of the paper is, Ideals and practicalities of policy co-design – Developing England’s post-Brexit Environmental Land Management (ELM) schemes. This is a significant piece of research with many lessons for policy makers and others involved in co-design processes. It goes beyond the co-design methods for individual projects, to broad-based policy aimed at long term outcomes and culture change.

Future of co-designing policy change

To enhance co-design methodologies the focus should be on refining and expanding them to ensure applicability across diverse policy domains. The role of emerging technologies could offer some assistance in different ways to facilitate co-design methods. The complexities of power dynamics and their impact on policy outcomes is another important factor to consider.

“This could be more achievable if policy-makers prioritize capacity building among stakeholders to facilitate their active participation in co-design processes. Providing training and resources to community members, especially those from underrepresented groups, will empower them to contribute meaningfully to policy development.”

Houses of Parliament in London showing the clock tower of Big Ben from the River Thames.

From the abstract

There are few examples of where co-design has been applied to active policy development on a large scale. England’s post-Brexit Environmental Land Management (ELM) schemes offers a fascinating ‘laboratory’ to analyse how co-design at this scale works in practice. 

This paper offers the first in-depth empirical assessment of the process from the perspectives of both the policy makers and stakeholders. We provide critical insights on ‘pragmatic’ applications of co-design to active policy development. We reflect on what this tells us about the wider processes of policy development that may need to change. That is, if we want to accommodate this more ‘democratic’ approach.

Our analysis identified key barriers to co-design and revealed a mismatch between the principles and practices of ‘co-design’ in the initial development of ELM.

Challenges were: 1. A lack of shared decision-making and empowering stakeholders to contribute to problem-definitions. 2. Confidentiality requirements that introduced barriers to information-sharing. 3. Insufficient transparency and feedback on what happened to stakeholder’s contributions in terms of policy development. 4. An absence of detail on the schemes, including proposed approaches, payment rates, advice, baseline measures, the kinds of ‘outcomes’ expected, and monitoring mechanisms. 5. A repetition of themes that participants had already discussed. 

Many of these mismatches may be common to other policy arenas. We argue that improved application of policy co-design in government will rely on wider changes to political processes and the institutional culture and practices within the civil service.

Consultation vs Participation and Partnership

Community consultation is a vexed issue when officials and community representatives interpret “consultation” in different ways. A Swedish study found, unsurprisingly, that officials expected a fast consultation process for ready-made projects. On the other hand, employees of disability groups were expecting to be more involved. They were expecting participation and partnership. The consequence is conflict.

Swedish national and local policies introduced universal design concepts to make disability part of human diversity. However, appropriately involving people with disability in decisions is another matter. Image from the article.

Graphic depicting the two different notions of collaboration. Municipal officials think consultation for facilitation. Disability organisations think partnership for influencing.

It is not uncommon to find unsolvable conflicts in a suburban project where planners clash with unaddressed local problems. But the result should not be a wilful dismissal of citizens’ issues. Participation should reduce the risk of contested or disregarded outcomes. However, disregarding disability issues in project development builds mistrust of local authorities.

The Swedish study examined the perception of consultation with people with disability in three Swedish cities, applying a universal design approach. The paper includes many references to the literature to support their qualitative research.

Consultation

The findings of the go-along study, and participant observation at meetings revealed a complex picture of participation styles. In one situation, the consultation expert referred to the needs of people with disability as “opposing interests”. The consultant treated the workshop as an opportunity for them to “blow off steam”.

Partnership

Disability organisation employees saw themselves as partners with the right to negotiate outcomes. But this did not correspond with their experience. Their involvement was too late in the process, and after procurement requirements were set. Having lived experience is they key point, not whether participants understand accessibility legislation. Indeed, openness and creativity are more important than accessibility expertise.

The title is, Between consultation and partnership: participation styles in Swedish urban revitalization processes involving disabled people. An important study for planners and policy makers at local government level. A reminder that they have obligations under disability discrimination legislation.

From the conclusions

The municipal project leaders were oriented towards Consultation because they wanted to quickly get ready-made proposals confirmed. Employees of disability organizations collaborated with officials as partners in the administration of and recruitment for workshops. However, they wanted ongoing feedback to influence the result.

These different expectations on the aim of participation entailed misunderstandings. So did unclear roles regarding representativity and the asymmetry of resources and interests. Failure to communicate opportunities for influence and the limited roles given to participants generated feelings of uncertainty and mistrust.

Officials were unsure about the legitimacy of participants, and participants about the conditions for influencing the process. These findings suggest that the aim and role of participation would gain from being clarified in advance. Topics such as previous experiences, policy, constraints, and opportunities for influence should be discussed at pre-workshop stage. Thus, co-creative dialogues might be developed.

Co-designing organisational change

Co-designing with users is gaining momentum and being applied in many different situations. Participatory Action Research is familiar to academics and now the concepts are underpinning collaborative methods in different fields of endeavour. Co-designing organisational change is a good way to bring everyone on board.

Hospitals are large bureaucratic enterprises comprising staff from varied backgrounds and skill sets. Add in the diversity of patients and visitors and we can see the difficulty of pleasing most, let alone all stakeholders.

A CT scanner with two medical staff one each side of the patient undergoing the scan process. The image has a blue hue.

Organisational change is a complex process that requires all parties to agree to change. To overcome some of this complexity, Australian researchers used arts-based research methods and arts-based knowledge translation. Their paper outlines the steps in the process and includes some of the participants’ drawings. Workshops, photovoice, photography and digital narratives all had a part to play.

From the conclusion

Both the co-design workshop and visual methods provided opportunities to connect people in an honest and respectful dialogue. System change must engage, educate, support and connect people. Transforming a system is really about transforming relationships between people who make up the system.

Too often organisations, groups, and individuals work on the same problem but work in isolation from each other. Bringing people together is the way to create a positive impact for change.

The arts-based design thinking processes provided a visual mechanism to explore creative solutions. It provided a place for clinicians and consumers to connect and discuss the proposed change strategies. The visual methods enabled time for reflection and then new conversations about care practices emerged.

The title of the article is, The Art of Transformation: Enabling Organisational Change in Healthcare Through Design Thinking, Appreciative Inquiry, and Creative Arts-Based Visual Storytelling.

From the abstract

This chapter tells the story of a complex organisational change to a healthcare service. It is about splitting rehabilitation functions across two hospitals in the same region. The design project was to help healthcare providers from both hospitals reach an understanding of the strengths that each hospital provided to its patients. One was a large metropolitan hospital, and the other a small hospital in a rural area.

Arts-based design methods were used. They included workshops, journey maps, and photovoice experiences from both providers and consumers. The team were able to help the rehabilitation service providers see the value of the organisational change and the potential benefits in the new service.

Co-design in healthcare

Health care is a service and like any service, you want the best for your customers. Customer feedback is common with most services, but knowing the problems after the event is not very effective. The first step is setting up a process that is going to get the most useful design decisions. That means co-designing from the very beginning including co-designing the research method.

Entrance to the emergency section of a hospital.. Co-design in health care.

An inclusive design approach means listening

A Canadian study documents the process of using an inclusive design approach to design the study. As a report of the process the paper necessarily includes many stories from participants. These stories are rich in information not limited by survey or interview formats and questions. It is up to the listener or researcher to guide these experiences into practical solutions.

The methods in this study are applicable to any public service, such as transport or education.

Storytelling and research design

Storytelling often goes beyond describing the immediate barriers and difficulties in using a service to reveal the impact on a person’s life.

“The inclusive design approach to the study was not rigid because inclusive design is about diversity, variability and complexity.”

A young man enters the therapy room. He is using Canadian crutches. He is shaking hands with the therapist

Design exercises

The study reports on three options for design exercises:

Option One: co-designers talk about any part of the health care service that needs re-design. Then the group imagines a future where the barrier no longer exists.

Option Two: co-designers discuss their own or another’s experience during the Covid-19 pandemic.

Option 3: co-designers use the research centre’s “virtuous tornado” exercise. The virtuous tornado is a diagram with three circles, In the centre is the statement, “Like and Use”. The next ring has the statement “Don’t like or have difficulty using”. The outer ring has the statement “Can’t Use”. See the diagram below.

Three rings of a circle indicating the three statements.

Figure 1 from the report with the three options for activities

The title of the article is, Co-Design as Applied to Accessibility in Health Care, and comes from researchers based in Canada.

Systemic Design Toolkit

The Design Council in the UK has built on its Double Diamond framework to take design thinking another step forward. The Double Diamond is about divergent and convergent thinking. The Toolkit adds “invisible activities” such as connections, relationships and storytelling. The Systemic Design Toolkit is a methodology for dealing with complex challenges. Although this toolkit and framework are about addressing the climate emergency, the elements, processes, and actions are applicable to any design issue.

Image shows the Double Diamond graphic surrounded by the Toolkit concepts.

The key is the “invisible activities”. Connections, relationships and storytelling are fundamental to co-design and co-creation processes.

The toolkit is set of tools that help designers think more systematically. Therefore, it is not a detailed manual of design basics such as user research and prototyping. And it is not a set of tools tailored to a specific design discipline. It draws on research with designers working in different disciplines.

Systemic change requires a thoughtful design process across government, business and other influential organisations. Systemic change is about tackling the structures and beliefs that underpin the challenge. With so many complex challenges facing all of us, we need to start thinking in different ways. That’s why the Design Council have created the systemic design framework.

Being inclusive and welcoming difference is about creating safe shared spaces. It’s also about having a language to welcome multiple and marginalised perspectives. This creates better outcomes. Image: the characteristics of changemakers from the Design Council.

A red background for four graphics representing: Connector and Convenor, Leader and Storyteller, Designer and Maker, and System Thinker. These are the characteristics of Changemakers.

The introductory webpage has a video that nicely explains the basics and the thinking behind the toolkit and the different elements. As with all Design Council resources, it is carefully designed and presented. There are other supporting resources to go with the toolkit.

Crisis planning by co-design

Floods and fires are a regular occurrence in Australia. However, they are happening more frequently and with more intensity. While there are standards for building evacuations and fire risk management, these were developed without thought for all citizens. And when people need to evacuate to a communal place of safety, there is no guarantee it will be accessible. Crisis planning requires input from all stakeholders and that includes community members.

Researchers in Sweden ran a workshop with stakeholders on crisis planning. One idea was to have practise events so that community members know where to go and what to do.

Fire fighters dressed in protective gear with oxygen tanks run towards the smoke.

Fire drills are commonplace in office blocks and institutions for both the occupants and emergency service personnel. Perhaps community members need these type of events to familiarise themselves with evacuation procedures and safe places.

Distributing information or brochures to households is not enough. People need to physically go through the process of getting to important places. They also need to check out places like shelters to ensure they are appropriate for their needs. People also need to know how to handle equipment they wouldn’t normally use. Also, information via the written word assumes everyone can read and comprehend the information.

A co-design, participatory process

The workshop generated collaboration in addressing the crisis scenario presented to the participants. The lived experience of people with disability was a good learning experience for disaster management staff. Maintaining a home preparedness kit is challenging for some people when some medicines are restricted. That means you can’t order in advance to keep a ‘spare’ set.

Although staff had worked previously with organisations to produce written materials, they could see that some people fall between the cracks. People who get by reasonably well and not connected to community services could be missed. Although they are managing with day to day activities they may need support in a crisis.

In summary, the co-design methods allowed for more nuanced information to emerge. Evacuation and rescue solutions are context dependent because each locality is different.

The title of the article is, Enhancing Inclusive Crisis Planning: Insights from a Disability-Inclusive Scenario Workshop. It’s open access so you can download the PDF.

Abstract

In response to escalating disasters, inclusive crisis planning is crucial. This study examines a specialised workshop that engaged people with disabilities in crisis planning, focusing on a simulated flood scenario.

Stakeholders from disability organizations and the local municipality collaborated, including eight crisis communicators and thirteen individuals with disabilities. The workshop facilitated knowledge exchange and surfaced disability-specific issues.

While successful in raising awareness, challenges arose in relaying detailed perspectives, emphasizing the need for nuanced communication. Locally relevant scenarios strengthened the workshop’s impact.

The findings stress the importance of early involvement of individuals with disabilities in crisis planning and offer insights for researchers and policymakers. This research contributes to enhancing inclusivity in crisis planning and informs future disaster risk reduction.

Vulnerable citizens in floods and fires

While there are standards for building evacuations and fire risk management, these were developed without thought for vulnerable citizens. And when people need to evacuate to a communal place of safety, there is no guarantee it will be accessible.

Residents of the Northern Rivers area of New South Wales are not new to flood events. But the floods are getting worse. A major flood event occurred previously in 2017 and four researchers decided to explore the experiences of people with disability.

They found people with disability and carers are more likely than others to be affected and displaced. Their needs are more immediate and urgent than most, and their mental health is more likely to be compromised.

Road Closed signs and a barrier of a road that reaches down to a river in flood.

Their findings show the profound impact and systematic neglect experienced by people with disability and their carers. A longer term recovery period is required for people with disability with tailored supports. Consequently, people with disability should be included in flood preparations and recovery efforts.

The title of the article is, Exposure to risk and experiences of river flooding for people with disability and carers in rural Australia: a cross sectional survey. It’s not a very accessible document as the format is in two columns.

Fire safety

The NDIS aims to support people to live independently in a home designed around their disability. This usually means a step free entry and modified bathroom designs. However, little, if any, thought is given to the design of fire safety and safe evacuation in an emergency.

“Fire safety systems must be considered as a total package of risk management, equipment, maintenance, training and fire and evacuation drills. …Where disabled or immobile persons are concerned, the importance of the total package cannot be underestimated.”

house fire photo taken at night time.

Some NDIS participants will need extra support to prepare for and react in an emergency. Hank Van Ravenstein outlines the role of the NDIS in his paper, Fire Safety and the National Disability Insurance Scheme. The first part relates the history of the NDIS followed by technical considerations for safety. He argues that the National Construction Code regulations don’t fully address or reflect the needs and risk behaviours of NDIS participants.

If we are to take a universal design approach, if the fire safety regulations aren’t sufficient for people with disability, are they sufficient for everyone?

Bushfire safety

As cities grow and become more compact, some citizens feel the need to “go bush”. This usually means finding a forest haven amongst the trees away from urban living. Then there are those who have always lived in the bush and wouldn’t live anywhere else. But bush living is risky and can be costly in terms of lives and property. It is particularly risky for people with disability and consequently, a different risk assessment process is needed.

Despite fire and rescue authorities encouraging people to prepare for bushfires (and floods), many leave it too late. Some are unable to understand the instructions, or unable to carry them out. A paper by Bennett and Van Ravenstein spells out all the technicalities of fire prevention and control.

A nighttime view of a major bushfire. The bright orange and red glow of the fire is reaching into the tops of the trees.

They argue for a risk assessment approach to existing and proposed buildings for vulnerable persons. The aim of their method is to provide a consistent basis for assessment. The title of their paper is Fire Safety Management of Vulnerable Persons in Bushfire Prone areas.

There is an related paper on vertical evacuation of vulnerable persons in buildings.