‘Codesign’ and associated terms such as ‘coproduction’ or ‘patient engagement’, are increasingly common in the health research literature, due to an increased emphasis on the importance of ensuring ...that research related to service/systems development is meaningful to end-users. However, there continues to be a lack of clarity regarding the key principles and practices of codesign, and wide variation in the extent to which service users are meaningfully engaged in the process. These issues are particularly acute when end-users include populations who have significant health and healthcare disparities that are linked to a range of intersecting vulnerabilities (eg, poverty, language barriers, age, disability, minority status, stigmatised conditions). The purpose of this paper is to prompt critical reflection on the nature of codesign research with vulnerable populations, including key issues to consider in the initial planning phases, the implementation process, and final outputs. Risks and tensions will be identified in each phase of the process, followed by a tool to foster reflexivity in codesign processes to address these issues.
This editorial introduces a thematic issue of Social Inclusion focusing on disabled people and the intersectional nature of social inclusion. This thematic issue includes transnational and ...transdisciplinary studies and expressions of lived experiences facing disabled people, their families, and allies across the globe from a social, human rights, and/or disability justice perspective. The articles comprising this issue include an explicit recognition and discussion of intertwined and socially constructed identities, labels, power, and privilege as explicated by pioneering Black feminists who introduced the concept of intersectionality. Taken together, the articles within this issue identify and articulate the powerful ideological forces and subsequent policies and practices working against transformational action. As such, we are not calling for the inclusion of disabled people into society as it is today—wrought with social, economic, and environmental crises. Rather, we seek a transformation of the status quo whereby disabled people are respected as an inherent part of human diversity with gifts and worthiness untangled from a capitalist and colonial system of exploitation, extraction, and oppression. This means that achieving social justice and inclusion requires radically reordering our economic and political systems. This thematic issue illuminates the impacts and root causes of exclusion to foment critical thinking about the possibilities for social inclusion from the perspective of those who are marginalized by the status quo.
BackgroundCo-creation approaches, such as co-design and co-production, aspire to power-sharing and collaboration between service providers and service users, recognising the specific insights each ...group can provide to improve health and other public services. However, an intentional focus on equity-based approaches grounded in lived experience and epistemic justice is required considering entrenched structural inequities between service-users and service-providers in public and institutional spaces where co-creation happens.ObjectivesThis paper presents a Charter of tenets and principles to foster a new era of ‘Equity-based Co-Creation’ (EqCC).MethodsThe Charter is based on themes heard during an International Forum held in August 2022 in Ontario, Canada, where 48 lived experience experts and researchers were purposively invited to deliberate challenges and opportunities in advancing equity in the co-creation field.ResultsThe Charter’s seven tenets—honouring worldviews, acknowledging ongoing and historical harms, operationalising inclusivity, establishing safer and brave spaces, valuing lived experiences, ‘being with’ and fostering trust, and cultivating an EqCC heartset/mindset—aim to promote intentional inclusion of participants with intersecting social positions and differing historic oppressions. This means honouring and foregrounding lived experiences of service users and communities experiencing ongoing structural oppression and socio-political alienation—Black, Indigenous and people of colour; disabled, Mad and Deaf communities, women, 2S/LGBTQIA+ communities, people perceived to be mentally ill and other minoritised groups—to address epistemic injustice in co-creation methodologies and practice, thereby providing opportunities to begin to dismantle intersecting systems of oppression and structural violence.ConclusionsEach Charter tenet speaks to a multilayered, multidimensional process that is foundational to shifting paradigms about redesigning our health and social systems and changing our relational practices. Readers are encouraged to share their reactions to the Charter, their experiences implementing it in their own work, and to participate in a growing international EqCC community of practice.
Employment is a pathway to increased income and empowerment, and improved quality of life and well-being; but for people with disabilities, job opportunities are limited, and employment supports ...often inadequate. This exploratory study analyzes the role of the nonprofit sector as a site for inclusive employment. Using data gathered from documents and in-depth interviews with nonprofit organizational staff, this study identifies the benefits that can accrue—to individuals, organizations, and communities—when agencies in the nonprofit sector employ persons with disabilities. The presence of employees with disabilities in the workplace increased sensitivity and awareness among all workers, conferred value on disability through an explicit recognition of the particularity of varying lived embodiments, and clarified the notion of dependence.Avoir un emploi assure un revenu et une autonomisation accrus ainsi qu’une meilleure qualité de vie et un sentiment de mieux-être. Mais pour les personnes handicapées, les possibilités d’emploi sont limitées et le soutien à l’emploi est souvent inadéquat. Cette étude exploratoire analyse le rôle que joue le secteur à but non lucratif pour assurer un milieu de travail inclusif. Au moyen de données provenant de documents et d’entrevues en profondeur avec le personnel d’organismes à but non lucratif, cette étude identifie les avantages qui se présentent—pour les particuliers, les organisations et les communautés—quand les agences dans le secteur à but non lucratif emploient des personnes ayant des handicaps. À ce titre, la présence dans le milieu de travail d’employés handicapés augmente la conscientisation et la sensibilisation de tous les employés, accorde de la valeur aux handicaps par une reconnaissance explicite de ce que les personnes handicapées peuvent contribuer, et remet en cause la notion de dépendance.
...the uptake of codesign has contributed to what has been called a ‘Participatory Zeitgeist’, whereby codesign and coproduction have become the spirit of our contemporary times. 1 Despite growing ...attention and uptake of codesign approaches and the potential for positive impact, there continue to be significant gaps and inconsistencies in evaluation. Health Expectations has published much of this study, including a recent systematic review of evaluation in patient and public engagement in research and health system decision-making. 2 While the review found a growing number of published evaluation tools, it also found that many of these tools lacked an explicit conceptual framework that is needed to link empirical evaluation with a theoretical foundation. A DE approach is appropriate in circumstances where project/program team members, especially decision makers, are open to reflexive practice and critical thinking and are committed to actively engaging in an iterative evaluation process. 3 Unlike traditional approaches, DE positions evaluation as an internal team function within the context of the project/program and is integrated into the process of gathering and interpreting data, framing, and surfacing issues and testing model developments. Unlike traditional evaluation approaches that require specific and measurable goals to be achieved by a step-by-step process, our Hub follows a set of core principles that emphasize authentic engagement of diverse stakeholders, taking time to listen for understanding and moving forward when participants and communities are ready for system change. 1 DE provided a process for periodic reflection on these principles to gauge progress, harvest important lessons and systematically examine what was working and what was not.
The lack of availability of disability data has been identified as a major challenge hindering continuous disability equity monitoring. It is important to develop a platform that enables searching ...for disability data to expose systemic discrimination and social exclusion, which increase vulnerability to inequitable social conditions.
Our project aims to create an accessible and multilingual pilot disability website that structures and integrates data about people with disabilities and provides data for national and international disability advocacy communities. The platform will be endowed with a document upload function with hybrid (automated and manual) paragraph tagging, while the querying function will involve an intelligent natural language search in the supported languages.
We have designed and implemented a virtual community platform using Wikibase, Semantic Web, machine learning, and web programming tools to enable disability communities to upload and search for disability documents. The platform data model is based on an ontology we have designed following the United Nations Convention on the Rights of Persons with Disabilities (CRPD). The virtual community facilitates the uploading and sharing of validated information, and supports disability rights advocacy by enabling dissemination of knowledge.
Using health informatics and artificial intelligence techniques (namely Semantic Web, machine learning, and natural language processing techniques), we were able to develop a pilot virtual community that supports disability rights advocacy by facilitating uploading, sharing, and accessing disability data. The system consists of a website on top of a Wikibase (a Semantic Web-based datastore). The virtual community accepts 4 types of users: information producers, information consumers, validators, and administrators. The virtual community enables the uploading of documents, semiautomatic tagging of their paragraphs with meaningful keywords, and validation of the process before uploading the data to the disability Wikibase. Once uploaded, public users (information consumers) can perform a semantic search using an intelligent and multilingual search engine (QAnswer). Further enhancements of the platform are planned.
The platform ontology is flexible and can accommodate advocacy reports and disability policy and legislation from specific jurisdictions, which can be accessed in relation to the CRPD articles. The platform ontology can be expanded to fit international contexts. The virtual community supports information upload and search. Semiautomatic tagging and intelligent multilingual semantic search using natural language are enabled using artificial intelligence techniques, namely Semantic Web, machine learning, and natural language processing.
Purpose: To identify and synthesize research evidence on workplace accommodations used by employers to recruit, hire, retain, and promote persons with physical disabilities.
Method: A structured ...search of six electronic journal databases was undertaken to identify peer-reviewed literature on the topic published from January 1990 to March 2016. Articles describing or evaluating workplace disability accommodation policies and practices were given a full-text review. Topic experts were contacted to identify additional studies.
Results: Details on specific accommodations described in 117 articles were synthesized and organized into three groups comprised of a total of 12 categories. The majority of studies did not rigorously evaluate effectiveness or cost-effectiveness of the accommodations under study.
Conclusions: This evidence synthesis provides an overview of the peer-reviewed literature of value to occupational rehabilitation professionals and employers seeking guidance on workplace accommodation policies and practices for persons with physical disabilities. A wide range of accommodation options is available for addressing physical, social, and attitudinal barriers to successful employment. Besides physical/technological modifications, accommodations to enhance workplace flexibility and worker autonomy and strategies to promote workplace inclusion and integration are important. More comprehensive reporting and evaluations of the effectiveness of accommodations in research literature are needed to develop best practices for accommodating persons with disabilities.
Implications for rehabilitation
There is a substantial peer-reviewed literature that provides insights into the barriers for persons with physical disabilities and the workplace accommodation practices to address them, though rigorous evaluations of effectiveness and cost-effectiveness are uncommon.
Attitudinal and social barriers stemming from stereotypes, ignorance and lack of knowledge are as important as physical barriers to employment for persons with physical disabilities.
In addition to physical/technological modifications, accommodations to enhance workplace flexibility and autonomy of a worker, as well as strategies to promote workplace inclusion and integration may facilitate successful employment of persons with physical disabilities.
PurposeTo develop a framework for estimating the economic benefits of an accessible and inclusive society and implement it for the Canadian context. The framework measures the gap between the current ...situation in terms of accessibility and inclusiveness, and a counterfactual scenario of a fully accessible and inclusive society.Design/methodology/approachThe method consists of three steps. First, the conceptual framework was developed based on a literature review and expert knowledge. Second, the magnitudes for each domain of the framework was estimated for the reference year 2017 using data from various sources. Third, several sensitivity analyses were run using different assumptions and scenarios.FindingsIt was estimated that moving to a fully accessible and inclusive society would create a value of $337.7bn (with a range of $252.8–$422.7bn) for Canadian society in the reference year of 2017. This is a sizeable proportion of gross domestic product (17.6%, with a range of 13.1–22.0%) and is likely a conservative estimate of the potential benefits.Originality/valueUnderstanding the magnitude of the economic benefits of an accessible and inclusive society can be extremely useful for governments, disability advocates and industry leaders as it provides invaluable information on the benefits of efforts, such as legislation, policies, programs and practices, to improve accessibility and inclusion of persons with disabilities. Furthermore, the total economic benefits and the benefits per person with a disability can serve as inputs in economic evaluations and impact assessments.
Background:Co-design is an approach to engaging stakeholders in health and social system change that is rapidly gaining traction, yet there are also questions about the extent to which there is ...meaningful engagement of structurally vulnerable communities and whether co-design leads to lasting system change. The McMaster University Co-Design Hub with Vulnerable Populations Hub ('the Hub') is a three-year interdisciplinary project with the goal of facilitating partnerships, advancing methods of co-design with vulnerable populations, and mobilising knowledge. Aims and objectives:A developmental evaluation approach inspired by experience-based co-design was used to co-produce a theory of change to understand how the co-design process could be used to creatively co-design a co-design hub with structurally vulnerable populations. Methods:Twelve community stakeholders with experience participating in a co-design project were invited to participate in two online visioning events to co-develop the goals, priorities, and objectives of the Hub. Qualitative data were analysed using a thematic content analysis approach. Findings:A theory of change framework was co-developed that outlines a future vision for the Hub and strategies to achieve this, and a visual graphic is presented. Discussion and conclusions:Through critical reflection on the work of the Hub, we focus on the co-creative methods that were applied when co-designing the Hub's theory of change. Moreover, we illustrate how co-creative processes can be applied to embrace the complexity and vulnerability of all stakeholders and plan for system change with structurally vulnerable populations.
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