Category: Co-design processes

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

Community driven design

Architectural competitions can bring design quality to cities. But the design competition process misses the opportunity to engage deeply with the public. And that means social value could be missing too. The process of community driven design competitions addresses unequal access to design decisions and cultivates social ties.

“Design has a role in building social capital. During a design competition, there are opportunities for placemaking and designing in social connectors.” Georgia Vitale

Image: 11th Street Bridge Park. Courtesy OMA + OLIN

An aerial view of 11th Bridge Street Park which spans a river. It was community driven design.

Community consultation takes many forms, some of which are perfunctory while others are more meaningful. That is, meaningful for the public – the users of places and spaces. The judges of architectural design competitions are other architects. So how does community consultation and engagement fit into this process?

Vitale’s article explores the drawbacks of limited or no meaningful public participation or interaction with users of the building or place or other stakeholders in design competitions. This is at a time for an increased need for social capital to be included in the planning and design process for more socially sustainable communities.

Social infrastructure, shared spaces and streets, and public transport are the outputs of design. However, community engagement with diverse community members helps create new connections. it also encourages people to become involved in the lives of their neighbours. That’s the social benefit of community driven design competitions.

Case Study

Vitale uses 11th Street Bridge Park DC as a case study. The goal is to knit together the two communities on either side of the river. And that’s without displacing people in the marginalised neighbourhoods on the eastern bank.

Bridging community and design: a new way forward is the title of the article in The Fifth Estate. See the original article for links to cited research and case study.

Older people: ageism influences digital design

Do stereotypes of older people affect how digital technology is designed? A team of researchers found that ageism influences digital design in negative ways. However, they found co-design partnerships overcame ageist attitudes and produced needed and used digital technologies.

Ageism can have a detrimental role in how digital technologies are designed. Participating with older people in the design process has the additional benefit of countering stereotypes. Image shows a group of older people on a desert camping expedition.

Of a group of older people having fun together on a camping tour.

Older people said the “ultimate partnership” in co-designing is to involve them from the beginning through to the end of the design process. Sharing control over design decisions was an important part of the process. They are more than informants – they are equals who have valuable contributions.

The researchers noted that although this vision of co-design is shared by designers, it is not always the case in practice.

Image shows older people working together on a workshop question.

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

Older people in the study also said that ageism emerges in implicit and explicit language about ageing. And ageist images can influence the design process. Consequently, the researchers say it is important to view the diversity of older people.

Co-design with older people

How and when to involve older people in digital design is also important. Understanding co-design with older people has the potential for avoiding insufficient prototyping, biases and errors in the design process.

The title of the article is, An “ultimate partnership”: Older persons’ perspectives on age-stereotypes and intergenerational interaction in co-designing digital technologies.

From the abstract

There is a gap between the ideal of involving older persons throughout the design process of digital technology, and actual practice.

Twenty-one older people participated in three focus groups. Participants experienced ageism in their daily lives and interactions with the designers during the design process. Negative images of ageing are potential influencing factor on design decisions. Nevertheless, positive experiences of inclusive design pointed out the importance of “partnership” in the design process.

The “ultimate partnership” in co-designing is to involve older people from the beginning, iteratively, in a participatory approach. Such processes were perceived as leading to successful design outcomes, which they would like to use, and reduced intergenerational tension.

Inclusive tourism with universal design

Research on the business opportunities in accessible and inclusive tourism is extensive. However, the intent of this research is largely staying on the shelf. A mix of attitudes towards people with disability and a sense of “not knowing where to start” are likely reasons. But you can get inclusive tourism with universal design by co-designing with tourism operators.

” Surprisingly, many cases did not meet the minimal requirements for “older people” and “people in a wheelchair.” … but this result did function as an eye-opener”.

A hotel receptionist is talking to a man and woman across a reception counter. Inclusive tourism.

A research group in Belgium has devised a method to uncover business opportunities through universal design. Collaborating with 17 accommodation providers they came up with a seven step process to integrate universal design into their business model. The process is also a way to increase knowledge and understanding of diverse guests and their experiences.

The research group documented their project in a conference paper. It begins by explaining inclusive tourism as a right, a business opportunity and a challenge. They devised a method to use the potential of universal design as a “business transformer”.

Co-designing the 7 steps

  • Step 1: We created a literature-based universal design screening based on mindset, management and infrastructure.
  • Step 2: We tested and updated the screening in each of the 17 accommodation providers.
  • Step 3: We analysed the data for each business which was given to them in a report.
  • Step 4: The results were further processed with the participant, who decided on priorities.
  • Step 5: An action plan was devised based on step 4.
  • Step 6: A concise checklist and a guide with relevant information (tools).
  • Step 7: A re-evaluation of the business to assess the actual improvement after interventions. Unfortunately the COVID pandemic impacted this research and the last step was not possible with the downturn in tourism.
Hotel bedroom with polished floors, orange and red pillows on a couch and textured wallpaper

The title of the paper is Inclusive Tourism: Co-developing a Methodology to Uncover Business Opportunities through Universal Design. Scroll past the first paper in the conference proceedings to get to this one.

From the abstract

We describe a 2-year project where the possibilities of universal design were explored. The purpose was to structurally uncover and address potential business opportunities.

The method was based on: inclusive customer journey, linking mindset, management and infrastructure, and diverse user needs. We collaborated with seventeen accommodation providers and developed a seven-step process. The process integrates universal design into their business model.

The Disabled Tourist: a book

Here is the overview from the publisher of The Disabled Tourist: Navigating an Ableist Tourism World. It’s an academic text by Brielle Gillovic, Alison McIntosh and Simon Darcy.

This book addresses a growing demand to hear the authentic voices and understand the lived tourist experiences of people with disability. The latest volume in The Tourist Experience series challenges what is arguably an exclusionary, marginalising, discriminatory, and ableist (tourism) world.

Front cover of The Disabled Tourist.

By drawing attention to the ‘dis/’ in ‘disabled’, the authors provoke the need to change binary thinking about people who live with disability so that they may be ‘able’ to assume the role of tourist.

They engage critical tourism and critical disability studies, and their respective theories, perspectives, and debates, around, for instance, models of disability that shape conceptualisations and worldviews, inclusive research and enabling language, and the ethics of care.

These are pivotal to dismantling normative structures to enable a more inclusive, equitable, and socially just tourist experience that promotes a more independent and dignified tourism world for people with disability.

Tourism and Disability: Book review

A woman in a yellow jacket is being assisted onto the tour bus by two men up a ramp.

Tourism and Disability is a new book addressing the existing  challenges and opportunities related to tourism for people with disability. The Booktopia review describes this as an underdeveloped and underestimated niche market. While there is a larger market for family group travel, there is also a market for disability-specific tourism products. 

The book examines the strategies, policies, and initiatives at regional, national, and international levels. The aim is to foster the development of accessible tourism.  It examines the different social, cultural, legal, and information/interactive barriers to inclusion. The book’s focus is on the distinctive travel demands of people with disability and how their needs differ from the preferences of travellers without disability. 

The various chapters provide a multidisciplinary approach to the topic covering management, economics, and statistical analysis. This makes it useful for academics and practitioners alike. 

The Title of the book is Tourism and Disability: An economic and managerial perspective. Published by SpringerLink you can purchase individual chapters online. The book is also available from other suppliers. The editors and most contributors are based in Europe where tourism is a key part of the European economy. 

Front cover of Tourism and Disability.

Who do we include in co-design?

Traffic light icon with Problem in red, Analysis in Yellow, and Solution in Green. Academics talk about “vulnerable groups” based on ethics approval language. But what they mean is, people who have difficulty participating because they have a disability, illness, or some other condition. Indeed, some ethics requirements are so protective of “vulnerable groups” that they make it difficult to include them from research projects. Consequently their voices are silenced. So how do we include them in co-design and when?

While co-design is the new buzz word, participatory design has been around in academia for many years. Involving communities in decision-making is now recognised as being responsive to community needs. That means going beyond a one-size-fits-all approach to design. 

Participatory design

Participatory design, or co-design, is about genuine inclusion. That is, not just informing the design, but being participants in the design process. However, involving people with complex needs poses some challenges. It’s easy to make assumptions about their capacity to participate and collaborate. However, this comes down to the way the participation process is designed. 

Participatory design and the inclusion of vulnerable groups is the topic of an article from Finland. They use three projects to compare how participatory design might work best. The first explored co-design activities with people with intellectual disabilities living in supported housing. The second focused on culturally diverse young people experiencing crisis situations. The third dealt with nursing students with learning disabilities adapting to work in the health sector.

Challenges and power dynamics

The article covers the challenges, the power dynamics and their methodology. Each of the three projects is documented in detail. The findings show some similarities between the projects, but when it came to users, there were different outcomes and processes. Participatory design became more challenging when there were more pronounced differences in power dynamics.

These three projects provide good information for involving vulnerable groups in participatory design processes. Questions of equality and genuine inclusion is about both the design activities and how the entire project is planned. 

The title of the article is, Whom do we include and when? participatory design with vulnerable groups

From the abstract

This article makes three contributions to participatory design (PD) research and practice with vulnerable groups:

    1. A framework for understanding stakeholder engagement over the course of a PD project.
    2. Approaches to making user engagement and PD activities more inclusive.
    3. An analysis of how the design and power dynamics of PD projects affect vulnerable groups’ participation.

A map of engagement evaluates stakeholder involvement from initial problem definition to design outcome. 

The first looks at codesign activities to support decision-making in the context of intellectual disabilities. The second looks at culturally diverse youth navigating crisis without adequate assistance from public services. The third examines nursing students adapting to work in the health sector without accommodations for learning disabilities.

Comparing the projects reveals patterns in project planning and execution, and in stakeholder relationships. The article analyses how users are defined, engaged and supported in PD; how proxies shape vulnerable groups’ involvement and PD projects as a whole; and opportunities for greater inclusion when the entire PD project is taken into account.

Co-design is not new

Scandinavians have a reputation for good looking and functional design. But there is a gap in the story of an evolving design culture across society. Designers began involving users in their design processes in the 1970s. So co-design is not new and is not a fad, but it is absent from design history.

Maria Görandsdotter says there are two probable reasons why user-centred design has been left out. One is that history has favoured aesthetics, meanings and impact of design rather than the design process. The other is that little has been written about the way design methods have evolved. It’s all been about Scandinavian design and not designing.

… the design methods movement sought to understand and describe ‘the new design methods that have appeared in response to a worldwide dissatisfaction with traditional procedures’.

A desk has highlighter pens in different colours, working papers and a smart phone.

Görandsdotter traces different histories in her book chapter including collaboration with experts in other fields. In 1971 the idea that only professional designers should design was challenged at an international conference on design participation. This is where the lines began to blur between designer and user.

There could be two reasons…

Görandsdotter presents two design histories to open up thinking about what design has been and what it might be in the future. Ergonomic user-centred design methods expanded the role of designers in relation to users. This was linked to Swedish disability legislation and research funding. Participatory design came about as a result of designers’ and users’ co-development of computer-based work tools. It expanded ideas of what design was, how how it happens, and with what kinds of materials. 

For anyone interested in design, and particularly collaborative design, this is an interesting read. It puts co-design into an historical context. In doing so, it shows it is not the latest fashion or fad in designing.

The title of the chapter is, Designing Together: On Histories of Scandinavian User-Centred Design. It is published in the open access book, Nordic Design Cultures in Transformation,1960-1980.

From the abstract

This chapter focuses on the emergence of user-centred and participatory Scandinavian design ideas and practices in 1970s Sweden. Many of the concepts and methods still highly present – supported as well as contested – in contemporary design stem from the turn towards collaborative designing through the late 1960s and early 1990s.

However, in Nordic design history, these radical changes in design practice have been more or less invisible. A shift in perspective is required to address this historical gap.

The two examples: The first highlights how ergonomic user-centred design methods expanded the role of designers and designing in relation to users. The second discusses the challenges of designers’ and users’ co-development expanded ideas of what design was, how and with whom designing took place, and with what kinds of materials.

Co-designing public buildings

An Australian article looks at co-design processes specifically for people with disability. The researchers explored stakeholder perceptions and experiences. The findings support participation of people with disability in architectural design processes.

The title of the article is, Co-design in the context of universal design: An Australian case study exploring the role of people with disabilities in the design of public buildings. You will need institutional access for a free read. Or, ask for a copy from the author, Valerie Watchorn on ResearchGate.

A graphic of a group of people including a wheelchair user.

From the abstract

This study aimed to explore stakeholder perceptions and experiences on co-design processes. Twenty six people with disability, advocates, and design professionals participated in workshops. Four major themes emerged: there are challenges to practicing co-design; co-design is inclusive, accessible, and genuine; co-design is planned and embedded in all design stages; and co-design delivers positive outcomes. 

Findings strongly support participation of people with disabilities in architectural design, highlight challenges and limitations to current practice, and provide insight into factors that optimise outcomes and the experiences of those involved.

Co-designing for the digital world

If you want to create something really useful for intended users, asking them to participate in the design process is a good way to go. And that means the design of anything – guides and toolkits included. From Ireland comes a toolkit for co-designing for the digital world where participants are people with intellectual disability.

A series of iterative workshops involving people with intellectual disability formed the foundation of an accessible design toolkit.

A collage of faces from around the world and pictures of smartphones. co-design for the digital world.

Co-design is important in the area of digital design and computer interaction. However, projects that claim to be user-centred often become technology led rather than user driven. A university in Ireland teamed up with a community service that supports people with intellectual disability. With the guidance of researchers, computer science students and community service users engaged in a co-creation process from which a toolkit was developed.

The collaboration highlighted the need for accessible design resources and training materials for both students and users. While there are many resources on co-design processes, and design thinking, few address people with intellectual disability. Those that do exist are not accessible or suitable for people with intellectual disability.

The toolkit is about co-designing with people with intellectual disability. Two overarching principles emerged. Use simple English with short sentences and simpler grammatical structures. Provide visual aids – icons and images – to overcome literacy limitations.

The paper explains the co-creation process in detail. The authors call the users co-designers, which is confusing because co-design usually means all participants including designers.

Understanding the complex process of consent to participate had to be resolved for the users. Another difficulty was encouraging participants speak up about design flaws or issues.

The title of the paper is, An Inclusive Co-Design Toolkit for the Creation of Accessible
Digital Tools.

From the abstract

Existing toolkits and resources to support co-design are not always accessible to designers and co-designers with disabilities. We present a study of a co-design process, where computer science students worked with service users with intellectual disabilities. The aim was to create digital applications together.

A series of co-design focus group sessions were conducted with service users previously involved in a co-design collaboration. The information from these sessions was used to devise an accessible design toolkit. This toolkit is intended to generate a sustainable resource to be reused in the student programme at TU Dublin but also in the wider community of inclusive design.

Editor’s comment: Most guides and toolkits are based on well-researched evidence, but the value of the evidence is sometimes lost in technicalities or too many words. A co-design process will seek out the key information that guideline users want and need.

Designing technology for all

one hand is holding a smart phone and the other is pointing at the screen.

It’s not just a matter of fairness. Technology is generally better for everyone if it’s designed for people with disability. People who are blind use the same smartphones as sighted people. They also use computers by using screen readers. But screen readers can’t improve the way websites are designed. A website that causes problems for a screen reader is likely to be more difficult for anyone. So designing for disability is designing technology for all. That’s universal design.

An article in The Conversation explains the issues in more detail. One of the issues for web designers is that prototyping software is not compatible with screen readers. Consequently they can’t get blind users to test their designs. It also means a blind designer wouldn’t be able to make mock-ups of their own.

The researchers said that accessibility is the hallmark of good technology. Many technologies that we take for granted were developed around disability. The article concludes that no matter how much empathy a designer has, it doesn’t replace the benefits of technology built by people who actually use it. 

The title of the article is, “Why getting more people with disabilities developing technology is good for everyone”.

See a screen reader in action in a previous post. 

Inclusive energy efficient home renovations

A case study from the Netherlands describes an inclusive process for designing energy-efficient home renovations. A neighbourhood of 280 apartments is the subject of the study. With a mix of homeowners, renters and social housing tenants, it was essential to involve residents in the renovation process.

Several tall apartment buildings situated next to a canal. Energy efficient home renovations.

Involving residents in major renovations is essential for bringing together the technical and social aspects of design.

The principles of civic and energy justice underpinned the approach to the project. Given that the resulting designs will largely be the same for every home, they need to be inclusive and considerate of ongoing energy costs for everyone. That means an inclusive design process is required.

Participatory action research

Expert stakeholders and six residents were interviewed and 50 residents were observed and interviewed during a tour of the demonstration apartment. Mutual learning was a key part of the iterative process involving prototypes.

Attention was paid to diversity, accessibility of research materials and interview materials were both verbal and visual. Technical design features were part of the results, but values emerged from the process. These values were health, sustainability, property value, cost of living and comfort.

The paper goes into more detail on the findings and the process. As part of the process, researchers developed a renovation guide to help residents understand what the proposed changes mean for them. They acknowledged time constraints which meant residents did not have time to experience the apartment. Rather, they only had time to view it.

Recommendations

Recommendations for improving the process include:

  • Location. Any sessions should be in the neighbourhood and in an accessible venue.
  • Time. Different meeting and interview times will suit different people.
  • Invitations. The guide acts as an invitation but might not work for everyone.
  • Language. Dutch is a second language for some people so a session in English might be necessary.
  • Other options. Apart from meetings, phone and email should be available. Not everyone feels comfortable in a group.

The lessons from the paper could be applied in housing situations such as social housing and co-housing. It also adds to the literature on inclusive design and co-design, and participatory action research.

The title of the article is, Values arising from participatory inclusive design in a complex process. There are diagrams to illustrate the complexity of designing an entire home and it’s technical systems, indoor climate, the lives and values of residents, and connection to systems and services.

From the abstract

This paper addresses inclusive design in a situation of complexity and how to improve it. The focus is on the inclusive design of a complex process and its tools, which is increasingly an issue in systemic design challenges. The current situation of climate change means we need to work on sustainability and inclusion at the same time.

The paper presents a case study of an energetic renovation process and the stakeholders’ activities and views in it. In a research-through-design process, the paper traces the possibilities to intervene in the process with communication tools to increase inclusivity of both process and outcomes.

Energy efficiency and universal design

Are energy efficiency and universal design incompatible? Potentially. Energy efficiency has an engineering approach and universal design has a sociological approach. This is what makes them incompatible according to researchers in Belgium. Energy efficiency is a measurable product whereas universal design is a process. So how can they both be addressed in home renovations?  This was the topic of a conference paper in 2016.

Thinking has moved on and we now talk about sustainability from both perspectives and the importance of having both. However, this paper brings the concepts into the same conversation and highlights areas of potential conflict. The paper has some interesting and explanatory graphs and comparisons that are worth a look especially for academics and theorists. 

Roof of a house covered in solar panels

The title of the paper is, Energy Efficiency and Universal Design in Home Renovations – A Comparative Review

Essential elements of co-design

Ayoung man with a black beard and hair is talking to someone across a table with coloured paper and pens. We need elements of co-design.Co-design in an academic context is part of participatory action research, or PAR. It’s used to understand, inform and change the design of policies, programs and services. But what are the essential elements of co-design?

As we know, community engagement or consultation is not the same as co-design. Including diverse stakeholder and user perspectives is essential for developing best practice.

Gabrielle Brand and her team have identified five core co-design principles in the field of health education. Briefly they are: inclusive, respectful, participative, iterative and outcomes focused. These principles apply in other fields too. 

Core co-design principles 

Inclusive: Involve key industry stakeholders and consumers from the initial proposal design. That includes the development and framing of learning focus to final educational outcome and delivery.

Respectful: Health care consumers are considered “experts by experience”. All input is equally valued in design, development and delivery of education.

Participative: The research process is open, responsive and empathetic in co-creating education. It generates new understandings of health and healthcare experiences.

Iterative: A cyclic, collaborative process that takes time. It embraces movement towards a shared education vision. It includes the risk of failure.

Outcomes focused: The focus is on achieving a shared educational outcome co-created during the co-design process.

Brand and her team used conversational interviews transcribed verbatim for analysis. An organic iterative approach to data analysis developed shared understandings. Artefacts were also used in the process for eliciting sensory triggers for participants and for developing vignettes. 

The article details part of a vignette to explain how it was used with learners. It’s based on a mother of an adult son with a psychosocial condition. Members of the research team benefited from knowing they had valuable and legitimate expertise on a research project. 

Title of the article is, A research approach for co-designing education with healthcare consumers. It has a mental health education focus, but the methods are applicable in other fields. 

One of the issues with co-design and PAR is passing ethics approval processes. When an ethics committee labels particular groups as ‘vulnerable’ they apply different approval criteria. However, including the voices of a broad range of people involves the participation of vulnerable groups. 

The end result of this kind of research is to “transform hierarchical health care relationships towards a more humanistic model of care”. 

From the abstract

Context: Community and consumer involvement in health professions education (HPE) is of growing interest among researchers and educators. It prepares health care graduates to effectively learn from, and collaborate with, people with lived experience of health issues. 

Approach: We describe the background to our work with health care consumers including the five core principles for successful co-design and how to apply them as a research approach in HPE.

We used arts and humanities-based teaching methodologies including engagement, meaning-making and translational education strategies. This illustrates how this research approach has been applied to reframe mental health education and practice in Australia. Furthermore, we share some reflective insights on the opportunities and challenges inherent in using a co-design research approach in HPE.

Conclusions: For the consumer voice to be embedded across HPE, there needs to be a collective commitment to curriculum redesign. This paper advances our understandings of the educational research potential of working with health care consumers to co-design rich and authentic learning experiences in HPE.

Co-design research approaches that partner with and legitimise health care consumers as experts by experience may better align education and health professional practice with consumers’ actual needs, an important first step in transforming hierarchical health care relationships towards more humanistic models of care.

Assoc Prof Gabrielle Brand is based at Monash University Peninsula Campus.

Health professional education research

Two New Zealand researchers in health science say it is time to apply universal design principles to health education research. They take the universal design principles that originated in architecture and translate them to universal design for research.

The researchers use the The three pillars of universal design for learning (UDL) as the means to crosswalk from architecture to research. The aim is to embrace and enact diversity in research design. This, of course, means engagement with people most often excluded from health education research. 

The title of the article is,  Designing for justice: How universal design theory could bolster health professional education research.

 

QDN’s Co-design principles

Front cover of QDN Co-design priniciples.Co-design is the new buzzword in the field of disability. But co-design isn’t only about disability inclusion. It’s a design process that seeks the best design for the intended users. Including people from a diversity of backgrounds, ages, levels of capability and experience is good practice. It’s how you do universal design. But what is it exactly and how does it work? 

The ultimate in co-design is to include users from design concept stage. The next best thing is to include users in testing the first prototype. Many design firms say budget and time constraints prevent them from implementing this highly iterative method. But how much does it cost to remedy poor design and lack of compliance? 

Co-design should not be confused with community consultation which seeks opinions about a design. User testing is not a form of co-design either. Co-design is where designers and users share the power of designing together. Co-design processes work for developing products, buildings, websites, services, policies and guidelines.

Queenslanders with Disability Network (QDN) have published their Co-Design Principles. This document obviously focuses on people with disability and the Queensland context. Regulation, legislation and policies such as the state disability plan fill most pages. 

 Five values underpin QDN’s co-design principles and processes:

      • Authentic Voice – We ensure those with limited or no voice are heard and valued
      • Collaborative Action – We learn from collective experiences, values, and wisdom 
      • Rights – We believe in a human rights approach 
      • Respect – We value human difference and diversity 
      • Resilience – We are here for the long term.

Co-design processes

A three page summary has the key points above and the co-design processes. 

The starting place – Craft the question that reflects intent/purpose and invites inquiry. 
Build the team – Get diversity and support inclusion
Discovery Phase – See the issue from different viewpoints, and perspectives. Hear from others including those who disagree
Pause and Reflect – Take time to pause and reflect on what you have learnt in the discovery phase and what you still don’t know before jumping to solutions
Sense-making – Look at the data, story, research, and evidence in their raw form and work together to make sense and meaning of what has been gathered
Generate options – Stage where sense-making starts to yield conclusions, ideas
and possibilities, and people get in the creative zone
Developing Prototypes – Generate as many ideas as possible and develop a working example of the policy, service, program, product, or scenario-based solution
Learning, reworking, and refining – Part of the learning cycle and reworks can produce ‘prototype’ – the solution for testing, piloting, or putting into action
Embed what works – Turn it into action and make it real. Keep people engaged and stay accountable.

The QDN website has more information about the organisation and their activities.

See other articles on co-design: The right to participate in co-design, and What does co-design mean? How does it work? 

Consulting people with disability

Front cover Consulting with persons with disabilities.
Full guidelines

Consulting people with disability just needs careful planning. Yes, of course it takes time, but all consultation takes time. But it is always worth it because it saves time in rectifications later. 

The United Nations Inclusion Strategy has guidelines for consulting persons with disabilities. The main guideline document is very detailed and links with the UN Convention Indicator 5. It covers representative organisations, when to consult, and how to do it. The Easy Read version is very helpful for everyone. 

 

Front cover of Easy Read Guide Consulting people with disability.
Easy Read version

The Easy Read version has the key information. It covers the importance of consulting, taking part in decisions, and working with representative organisations. There are links to the 2030 Sustainable Development Goals with the promise of “leave no one behind”. 

One key point in this version is that people with disability should be involved in decisions about everything – not just things to do with disability. 

 

Some days don’t have 24 hours

Lots of clock faces piled on top of each other showing different times. Week has seven days and every day has 24 hours. We all know that. But some people don’t have the same amount of time available within 24 hours as others. And it isn’t a case of poor time management. Time gets stolen. So what does it mean when I say, “some days don’t have 24 hours”?

Sheri Byrne-Haber pinpoints the issues in her article in Medium about the disability time thief. Sometimes it’s a few moments here and there, and sometimes it a regular chunk. 

This article shows why consulting with people with disability is not a matter of setting a date and time and sending out the invitation. The time of day and the place are really important considerations. 

The title of Byrne-Haber’s article is We don’t all have the same 24 hours. Anyone who thinks that we do lives in a monster privilege bubble.

 

What does Co-design mean? How does it work?

Two men look at a document. One is a doctor the other is a patient. The term co-design is being used more frequently, but what does co-design mean and how does it work? Well, that depends on the context. It could mean a design group working together. Nothing difficult about that concept. Or it could mean involving end users in the design process. This is where it gets more tricky and more questions arise.

At what point do you involve users? Which users do you involve? Will the users have the required knowledge and experience to contribute constructively? Will designers have the skills to be inclusive and listen to users? Participatory action research incorporates both designer and user learning. But these projects are necessarily long and usually have research funding attached. However, they usually produce knowledge and results useful in other settings. 

A related concept is co-design in quality improvement, for example, in a hospital setting. Both staff and patients have a role to play in advancing quality improvement. Differing levels of understanding between staff and patients can lead to tokenism. So how can we equalise knowledge so that everyone’s contribution is constructive? 

A research team in a Brisbane hospital grappled with this issue. Their research report is written in academic language and not easy to read. Nevertheless, they conclude that effective patient-staff partnerships require specific skills. Briefly, it means adapting to change, and generating new knowledge for continuous improvement.

A framework

The researches developed a framework that includes ten capabilities under three key headings. 

Diagram of the Co-design Framework.

 

    1. Personal attributes:
      • Dedicated to improving healthcare
      • Self-aware and reflective
      • Confident and flexible

2. Relationships and communication attributes:

      • Working and learning as a team
      • Collaborating and communicating
      • Advocating for everyone

3. Philosophies/Models:

      • Organisational systems & policy
      • Patient and public involvement best practice
      • Quality improvement principles.

These nine points are connected with the overarching theme of sharing power and leadership.

Title of the article is, “Co-produced capability framework for successful patient and staff partnerships in healthcare quality improvement: results of a scoping review”.

Other posts on co-design include The right to participate and co-design, and Co-design is another skill set.