Category: Co-design processes

Articles and research on co-design and co-creation methods

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.

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.

Doughnut economics and co-design

The problem with economic models is that they count the things you can count and leave out things you can’t. And sometimes that’s what can happen with co-design methods – doing what you know and not what is possible. A group of researchers adapted the Doughnut Economics model to create the Futures Doughnut tool for co-design for complex settings.

Doughnut economics seeks to address inequities, poverty, and standard of living. It’s about meeting the needs of humans and the planet. A group of researchers have adapted this economic thinking in the context of co-design.

Screenshot from the article showing a circle divided into sections overlaid with bright pink post it notes with writing on them.

Using a participatory design process, 115 stakeholders explored the model to navigate socio-ethical challenges. The process fostered constructive dialogue, and explored values and boundaries. This is a good process for working in complex institutional systems where stakeholders have diverse perspectives and priorities.

The title of the paper is, Baking an Institutional Doughnut: A systemic design journey for diverse stakeholder engagement. While the context of the paper is a university setting, it sets a good example for other situations with the Futures Doughnut Tool.

Limits of co-design activities

Co-design activities are good for advocating for and helping to generate creativity. However, they are insufficient for complex systems design where continuity of consultation goes beyond design ideation.

Co-creation methods are difficult to compare by definition because they are context dependent. An adaptive and staged systemic design process requires significant time and buy-in from stakeholders. Without this commitment there is a risk of misunderstandings and therefore consensus on decisions.

Co-design is good for finding common ground with diverse vocabularies, disciplines and lived experience. However, it also needs the right tools and methods and the Futures Doughnut was developed with this in mind.

From the abstract

Doughnut Economics offers a compass for navigating the complexities of creating a safe and just space where humanity can flourish while respecting ecological boundaries. This pictorial reports on how the Doughnut Economics model can be applied as a tool for facilitating complex stakeholder engagement.

We present a visual framework and facilitation method for systemic and values-led thinking. The context is establishing a new interdisciplinary academic institution.

Using a participatory design process, 115 stakeholders from academic, research, and administrative backgrounds explored this model. The aim was to co-create an institutional compass to navigate the socio-ethical challenges of their professional practices.

Co-creating urban development

The concept of universal design has evolved over the last 50 years, and so it should as we learn more about how to be inclusive. However, many authors continue to base their writings on outdated notions of universal design. So it’s refreshing to find an article on co-creating urban development that advances our thinking about the concept.

Nordic countries embraced a universal design policy for urban development at the turn of the century and continue to learn from their experiences. Universal design thinking has evolved to using co-design and co-creation methods in design processes. This the point at which Emil Erdtman takes up the ideas and develops them further.

Universal design is three things:

  • an ethical principle for inclusion of diversity
  • a vision of an inclusive society
  • a unifying approach to policy and perspectives
Drawings of 12 different people indicating population diversity.

In Sweden universal design is a guiding principle for policies, procurement and living environments. While it is applied in local projects, little is known about local practice. Hence Erdtman’s research. His explains the differences between consultation, partnership and co-creation in the graphic below.

A graphic showing three hexagonal shapes. One shows arrows going one way to represent consultation. One has arrows pointing outwards to represent partnership negotiations. One has arrows pointing to the centre depicting equal contribution of co-creation.

Consultation is a one-way facilitation process, partnership is a negotiating process between competing interests, and co-creation is equal contribution for innovation.

Erdtman describes the projects in his study and the methods he used which included conversations about participants’ understanding of universal design. The conversations allowed for critical discussions rather than “battles about words”.

Discussions about terminology are detrimental to the pursuit of inclusive practice so it was good to see the focus stayed on the concept itself. Nevertheless, universal design was only connected to impairment despite the intersectional nature of the concept. A focus on impairment hides a more general user perspective as social beings in urban life.

Co-creation at the local level

Erdtman found that universal design practice shows diversity and inspired new methods. However, changing municipal practice takes time. A concept like universal design does not replace routines of planning, negotiation and rational management.

Co-creative ways of collaborating is about integrating experiences from a diversity of people, not thinking in separate tracks. It’s about equal participation and responsibility. It is not about commenting on ready-made proposals or delivering experiences as information. Limiting accessibility as just for people with disability risks leaving out invisible needs of others.

Universal design must be contextualised

Universal design transcends conventional categories and fosters continuous improvement. It enriches urban development by integrating diverse user experiences. It must be continuously contextualised, and developed differently depending on the locality.

Universal design should inspire innovation beyond group interests, regulations and human categorisation. Otherwise it will be just another rationalistic planning model.

A large and diverse group of small plastic cartoon characters placed around a dark greet star shape.

The title of the article is, Co-creating urban development: local Swedish projects guided by Universal design. It was published in Design-for-All India. You can also download a copy in a font that is easier to read than the original.

From the abstract

This chapter contributes to knowledge about the understanding, implementation and co-creation of universal design. Interviews and group discussions were conducted and participant observation was made in three urban development projects.

The understanding of universal design was multifaceted. It is an ethical principle for inclusion of diversity, a vision of an inclusive society, and a unifying of policy and perspectives. Participants emphasised flexibility, predictability and personalised support. They linked universal design to accessibility as a separate and target group with a focus on regulatory compliance.

In the local context universal design practice will be expressed in diverse ways. Collaboration between municipalities and local disability organisations is formal and established. Different conditions and expectations created tensions about roles and interpretation of disability experience.

Disability experience is information for facilitating processes and for negotiation outcomes. However, there were conditions for co-creation.

Universal design, diversity and low hanging fruit

In the same publication there is another interesting article titled, Universal design, visualising diversity and two low hanging fruits. Here is the abstract.

To plan, design and build with diversity in mind is a complex process. While goals such as inclusion, participation and social sustainability may be present in the vision for a future product, service or environment, studies show that the initial vision isn’t always realized in the end result. There are still far too many products, services and environments that are hard to access or use for parts of the population. In this text we focus on comparatively simple, lightweight, tools – “low hanging fruits”.

Such tools are already available, there are personas, context cards, but also checklists and guidelines. Inspired by the existing work, we have developed one deck of cards, intended to serve as thought support by visualizing population diversity. In order to obtain a similar effect in digital environments (egin digital twins and other 3D environments used in planning and development) we have also developed 3D models (vehicles, devices and humans) that can be put in the digital environment, and serve as a reminder to the users of the digital environment of population diversity.

Design skills in healthcare

Does the design of medical products impact on the safety of patients and health practitioners? The answer in many cases will be, yes. For patients it affects everyday medical items like respiratory equipment. But the real issues are for health practitioners. That’s why we need design skills in healthcare. Authors of a recent paper discuss some of the issues. They note that when design unwittingly excludes whole groups of users it becomes bad design. Medical products and services designed to best fit a Caucasian male body type means a poor fit for others.  The authors provide an excellent example of where a design is potentially dangerous. “In one example, the only green button on a defibrillator switched the device off, whereas the only red button was for shocking. In simulated A wall mounted defibrillator in bright orange.emergency situations, it was no surprise that some participants pushed the green button and inadvertently switched the device off when intending to shock.”  Co-design is considered the appropriate approach in healthcare services, products and building design. It enables stakeholders in healthcare sciences and delivery to provide input at the early stages of design. Although co-design is accepted as a good idea, design skills are yet to be emphasised and captured in co-design processes.  The title of the paper is, Design as a quality improvement strategy: The case for design expertise

From the abstract

Bad design in safety-critical environments like healthcare can lead to users being frustrated, excluded or injured. In contrast, good design makes it easier to use a service correctly. Design impacts on both the safety and efficiency of healthcare delivery, as well as the experience of patients and staff. Co-design as an improvement strategy has gained traction in the healthcare quality improvement literature. However, the role of design expertise and professional design is much less explored. Good design does not happen by accident: it takes specific design expertise.  We define design, show why poor design can be disastrous and illustrate the benefits of good design. We argue for the recognition of distinctive design expertise and describe some of its characteristics. Finally, we discuss how design could be better promoted in healthcare improvement.

Residential spaces for healthcare

An Introduction to Inclusive Healthcare Design By Kiwana T. McClungAn Introduction to Inclusive Healthcare Design is a book with more articles on healthcare design. It includes the built environment, allied health, social care, and urban studies.  One chapter, The Design of Residential Spaces for Healthcare, looks at homes and residential spaces for delivering healthcare. 

Stroke Toolkit co-designed

The Canadian Stroke Toolkit for Aquatic Rehabilitation and Recreation Therapy (STARRT) was devised using a co-design method. The STARRT website has a section on the process as well as using the toolkit. Briefly, the method has four parts:

    1. Scoping review focused on the implementation of the therapy
    2. Qualitative interviews with participants post-stroke and professionals
    3. Participatory design with design team and consumers for the toolkit
    4. Prototyping and dissemination of the toolkit.

Co-design in research: shifting the power

People with disability are often left out at the beginning of the research process when organisations want research done quickly. This reduces the level of power they have as members of the research team. To be effective, people with disability must be in decision-making positions before research proposals are developed.

People with disability are expected to be involved as researchers and decision-makers in research projects. But co-design methods require respect for the process from the outset.

A man in a blue check shirt is sitting in front of a laptop on a desk and is writing with his left hand in a notebook.

Researchers have to navigate tensions inherent within research institutions when involving people with disability from the beginning of the process. Improving the quality of the research is one of the aims of co-designing with people with disability. It also gives an opportunity to employ people who might not otherwise find a job.

A research team led by Flinders University use a case study to show how to engage with prospective co-designers. They looked at the different factors or conditions that enable or constrain co-design work, and how they relate to each other. The funding of commissioned work has an effect on the internal dynamics and relations within the team. They also found that authority and power can shift and change depending on how these components interact.

Clearly there is more to simply gathering a group of people with disability within a research team and thinking co-design will just happen. Factors such as institutional requirements, and authoritarian hierarchies can have a significant impact on co-design processes.

The title of the article is, Shifting power to people with disability in co-designed research.

People with and without disability need to work together to overcome resistance when co-design work is not treated with respect by people or systems.

Two pairs of women sit at a table with paper and pens. One of the pair looks to be explaining something to the other.

From the abstract

This paper explores tensions navigated by researchers and project leaders when involving people with disability as experts in co-design and in the core team.

Structural conditions of funding and institutional support were foundational to the co-design. These included accessible practices, core roles for people with disability and resolving ableist conditions.

Power shifts were easily undermined by institutionalised norms that disrespected the co-design contributions. The value of co-designing research was centre to articulating key issues, methodology and analysis.

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.

Co-create and trans-create

How do you co-design with people who have limited communication skills? After all, co-design methods are built on conversations. The first thing then, is to find a way to overcome this significant barrier. This means finding non-verbal methods to find out how they experience the world. 

Researchers developed a method called this “trans-create” because it was similar to translating one language to another. The used tangible artifacts rather than words, paper and pens.

Against a black background, blurred purple dots looking like digital lights. Some are brighter than others.

Instead of co-designing with children without disabilities for children with disabilities, we tried the opposite. We co-designed with children with disabilities for children without disabilities. We used music, rhythm, lighting, tangible artifacts and new programmable possibilities to facilitate communication and co-creation, as an alternative to verbal language.

Th title of the article is Trans-Create – Co-Design with Persons with Severe Disabilities.

From the abstract

Co-design methods are a challenge with persons with significantly different prerequisites for communication. It’s hard to know if what we design is good for them in the way they themselves define it. We present a new process called “trans-create” based on translating between cultures.

Using vision and sound and tangible artifacts we changed the distinction between designer and user and the design process and the user process.

Co-research with Experts with Disability

The following abstract is from a paper that requires institutional access for a free read.

The title of the paper is Inclusive Co-research with Experts with Disabilities.

Abstract

Existing co-research methods often limit participation and perpetuate exclusion of highly diverse populations. This chapter introduces an approach to co-design research that is inclusive and supports full participation of individuals with unique or diverse needs.

Co-research has moved from the “design for” perspective to the “design with” perspective, and more recently to the “design by” perspective. Design by means the population most impacted by the design is supported in creating the design.

Inclusive co-design is a mindset that is applied in three ways: appreciating, scaffolding, and keeping (the ASK approach). Appreciating involves recognition of co-researchers as experts in their lived experience.

Keeping gives ownership and builds capacity within the co-researchers and their communities in the research process and outcomes. We build on our own experience from over one hundred inclusive co-design research activities, to provide guidance and approaches to other researchers who want to engage in inclusive co-design research.

Co-designing social housing policy

Co-designing social housing policy is a relatively new concept in Australia, so it’s good to see tenants involved in policy development. New AHURI research tackles the issues amid the need for urgent reform of the housing sector. Tenant participation leads to benefits for all involved.

‘For policy co-design methods
to work well, there must be
respect and recognition of the
expertise of all participants
involved in the policy making
process…’

A new three storey housing development still has the chain link fencing around it. Social housing policy.

AHURI’s summary paper of the research acknowledges the role of champions within organisations who must lead the development of the design processes. Otherwise, they are not successful or sustainable. However, they require resources and support for these processes to succeed.

Attracting ‘representative’ tenants is difficult because those with the most complex challenges often cannot spare the time because they are in crisis. If participation programs are online or use written forms, only those who can read will be included.

What’s needed for successful co-design

Other important findings from the research include:

  1. A toolbox of participatory methods is needed for engagement across the diverse population who have varied needs for housing assistance.
An old wooden box with mental handles and clasp.

2. Recognition of expertise of frontline staff is an important but untapped source of potential policy expertise.

3. An ongoing commitment is necessary to resourcing, investing in, and training workforces, and building participant capability and supports for policy co-design. And an evaluation program to confirm what works well, under what conditions and for whom.

The title of the policy summary is, Including social housing tenant voice in policy leads to better outcomes.

The report’s executive summary, Social housing pathways by policy co-design: opportunities for tenant participation in system innovation in Australia has more. Or you can read the full report as well.

Transport infrastructure co-design toolkit

Public transport infrastructure in Queensland is undergoing significant design changes using co-design methods. The new Cross River Rail project embraced the concept of co-design to ensure new and upgraded infrastructure is fully accessible. The result is a transport infrastructure co-design toolkit as well as accessible trains and stations.

Co-design of large-scale public transport infrastructure spans several stages in the design process. Consequently, embedding a culture of co-design across the organisation is essential in the planning, development and implementation stages.

Image from the Toolkit

New train in a new tunnel with workers looking on. Cross River Rail Co-design toolkit.

The authority responsible for the project collaborated with the disability community and established strategic priorities to support ongoing infrastructure design.

Accessibility agenda

First there needs to be an accessibility agenda – finding out the diversity of accessibility challenges. That means establishing ways of working with the disability sector to drive decision making. However, there is a risk that some of these priorities disappear in pre-project activities such as feasibility studies and technical requirements. Some decisions made at these stages cannot be changed as they lock in key aspects of the design.

A culture of accessibility

An organisation-wide culture of accessibility is essential for the success of projects. Without this culture change the potential for “gaps” in the travel chain will arise for travellers. Sharing information across the different transport organisations and contractors and consultants is a must. By consolidating the knowledge base across the sector, it eventually gets easier to create inclusive public transport projects.

The title of the Toolkit is, Embedding Accessibility Co-design into the Delivery of Public Transport Infrastructure. The document is the result of research collaboration between the Hopkins Centre and the Cross River Rail Delivery Authority. The outcome has established a clear set of priorities for continued support of changes including those already underway. They key element is co-design with the disability community.

Toolkit contents

There are three parts to the document: Context and background, Outline of the co-design process, and Facilitating the co-design process. The appendices have extra detail and additional resources.

The Appendix on co-design mindsets appears to follow the theory of the once popular Myers-Briggs Type Indicator. Nevertheless it does indicate that different people think differently – a concept aligned with Universal Design for Learning. It means people should be given the opportunity to express their thoughts in different ways.

The video below gives an overview and showcases some of the innovations in design. For more about accessibility, visit the Cross River Rail website where there are more videos with transcripts.

Mapping the inclusive city

Statistics capture many important measurements which are reported as facts, but who chooses what to measure and how it is measured and counted? If the lives of some people are left out of the research questions their facts become invisible. So researchers in the Netherlands took up the issue of inclusive data collection. The project was about mapping the inclusive city by engaging people with disability as co-researchers.

Improving the relevance and quality of research beyond statistical approaches, requires the involvement of community members with ‘the problem’. Image from Heeron Loo’s website.

Two women and two men are talking outside a building in the sunshine.

The research team, including people with disability, explored issues of accessibility in urban spaces. The digital map-based tools worked well and provided insights into accessible locations. However, it is not known if these locations are welcoming and inclusive. The notion of inclusion within places mapped needs a new design thinking cycle for all researchers.

Mapping accessibility is a different endeavour to mapping inclusion, and this research team has opened up the potential to find ways to map inclusion. Accessibility is an essential first step. Getting around is one thing, feeling welcoming with a sense of belonging is another. Urban design features and the attitudes of fellow citizens have an important role to play.

The title of the article is, Mapping the inclusive city: Engaging people with disabilities as co-researchers in Groningen (the Netherlands).

Traditional social research methods are discouraging of involving people with (intellectual) disabilities. This is largely because of governance issues relating to ethics committees. However, participatory research methods with people with disability are more acceptable. The article outlines the participatory research method emphasising the equal participation of all parties involved in the process.

From the abstract

Given the lack of collaboration with people with disabilities in (spatial) decision-making processes, our aim was to develop and test a method that allowed for the involvement of people with disabilities in community development, and in particular in mapping accessibility and inclusivity in various places and spaces in the city of Groningen (the Netherlands).

In this project, we collaborated with an organization that provides housing and care for clients with acquired brain injury, deafness with complex problems and chronic neurological disorders. We describe our approach and experiences in participatory research, focusing on the opportunities and challenges in developing and implementing a data collection method that enabled us to involve people with a disability as co-researchers.

Accessibility at bus stops

A research paper from Chile takes a similar approach. Instead of conducting a physical access audit, the researchers asked people about their bus stop experiences. It is another way of finding out how well access standards promote inclusive environments. Getting to and from the bus stop and boarding and alighting the bus all have to work together.

The researchers conclude that legislation and standards are insufficient to overcome gaps in this part of the travel chain. Consequently, people with disability are not afforded equal conditions.

The title of the paper is, Perceptions of people with reduced mobility regarding universal accessibility at bus stops: A pilot study in Santiago, Chile. You will need institutional access for a free read of the whole paper.

An orange articulated bus approaches a bus stop on a main road.

From the conclusions

This research is part of an interdisciplinary work that seeks to study universal accessibility for people with mobility impairments from different perspectives. From Engineering, it is important to highlight the relation to the dimensions of the space used, while in Occupational Therapy, it is relevant to include the perceptions when participating in the occupation.

The results contribute to the lived experiences of people with disability. They reveal the barriers, challenges, and opportunities that influence successful participation in mobility in the community. In conclusion, there is a lack of regulations regarding the characteristics of spaces. The perceptions of people with mobility impairments must be brought into the design to guarantee the right to move in equal conditions.

Image from THE DEVOE L. MOORE CENTER BLOG

Engaging people with intellectual disability in research

People with intellectual disability continue to be excluded from research practices. This is often due to social and economic factors such as limited education opportunities and access to services. Exclusion is easily perpetuated when you add systemic bias to the list.

Ethics approval processes often view people with intellectual disability as “vulnerable”. This makes their inclusion more difficult for researchers.

Four people are seated at a table but their faces are obscured. One is writing on a notepad. A coffee mug and laptop are on the table. Including people with intellectual disability.

The design of research methods systemically excludes people with disability and other marginalised groups. Consequently, their voices are unheard in health, employment, education and independent living research.

According to an article from the US, approximately 75% of clinical trials have directly or indirectly excluded adults with intellectual disabilities. Just over 33% of the studies have excluded people based on cognitive impairment or diagnosis of intellectual disability.

New methods needed

In response to the ethics and research design challenges, researchers are finding new ways to adapt their methods. The article discusses three approaches:

1. Adapting research materials and processes into individualised and accessible formats.

2. Adopting inclusive research participation methods.

3. Community participation and co-researcher engagement.

Although inclusion strategies are making progress, researchers are lacking helpful guidance. Consequently, including people with intellectual disability in research in a meaningful way requires more work.

The title of the paper is, Inclusive Methods for Engaging People With Intellectual and Developmental Disabilities in Research Practices. This is a short paper and easy to read.

Overcoming ethics approvals

A paper on “Inclusion as Process” also tackles the issue of ethics approval underpinned by a universal design and UDL approach. The title of the paper is, How to Adopt an “Inclusion as Process” Approach and Navigate Ethical Challenges in Research.

Technology and wellbeing

A related article on co-designing with people with intellectual disabilities looks at developing technologies. Here is an excerpt from the abstract:

Involving people with intellectual disabilities on issues relating to their mental wellbeing is essential for developing relevant tools. This research explores the use of inclusive and participatory co-design techniques and principles.

Individuals with intellectual disabilities participated in a co-design process via a series of
workshops and focus groups. The workshops helped participants explore new technologies, including sensors and feedback mechanisms that can help monitor and potentially improve mental wellbeing. The co-design approach developed various interfaces suited to varying ages.

The title of the article is, In the hands of users with Intellectual Disabilities: Co-Designing Tangible User Interfaces for Mental Wellbeing.

People with intellectual disability and support workers

Abuse of people with intellectual disability focuses on extreme forms of violence at the expense of everyday indignities. Humiliation, degradation, and hurt have a negative effect on identity and makes it more difficult to recruit research participants.

An article by a group of Australian researchers recommends taking action to support both workers and people with disability for improved wellbeing. Here are the key points from their article:

  • Everyday harms are the little things that upset people, such as making unkind jokes about you, being ignored, or disrespected, are not treated as abuse
  • In our project, we called this misrecognition.
  • We looked at when misrecognition happened between young people with disability and their paid support workers.
  • Much of the time, people did not intend to cause harm, but the other person was still hurt by the things they did or said.
  • We can improve the way that people with disability and support workers work together if people understand how their actions affect other people.

The article is titled, Recasting ‘harm’ in support: Misrecognition between people with intellectual disability and paid workers.

Theatre, research and intellectual disability

This study aims to demonstrate how disability theatre contributes to inclusive research practice with people with intellectual disability. The title of the article is Disability Theatre as Critical Participatory Action Research (CPAR). Here is an excerpt from the abstract:

This article describes how self-advocates (individuals with intellectual disability), theatre artists, researchers, and a community living society create social justice disability theatre as critical participatory research. It demonstrates how disability theatre can contribute
to and advance inclusive research practice.

Disability justice-informed theatre as CPAR has direct relevance to people with intellectual disabilities. It also offers a platform where self-advocates’ diverse ways to communicate and be in the world are honoured. Mentorship generates opportunities for self-advocates to learn, practice, and develop research skills.

The theatre creation process (devising, developing, and refining scenes) is research in itself where tensions are recognized as sites of possibility. Future research should explore strategies, and protocols for power sharing and problem solving within disability theatre.