Co-creating a new Charter for equitable and inclusive co-creation: insights from an international forum of academic and lived experience experts.

BACKGROUND: Co-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. OBJECTIVES: This paper presents a Charter of tenets and principles to foster a new era of 'Equity-based Co-Creation' (EqCC). METHODS: The 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. RESULTS: The 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. CONCLUSIONS: Each 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.

A Virtual Community for Disability Advocacy: Development of a Searchable Artificial Intelligence-Supported Platform.

BACKGROUND: 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. OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

The Potential of an Artificial Intelligence for Disability Advocacy: The WikiDisability Project.

Human rights monitoring for people with disabilities is in urgent need for disability data that is shared and available for local and international disability stakeholders (e.g., advocacy groups). Our aim is to use a Wikibase for editing, integrating, storing structured disability related data and to develop a Natural Language Processing (NLP) enabled multilingual search engine to tap into the wikibase data. In this paper, we explain the project first phase.

Are you really doing 'codesign'? Critical reflections when working with vulnerable populations.

'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.

Workplace accommodations for persons with physical disabilities: evidence synthesis of the peer-reviewed literature.

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.

Inclusive mosaic: promoting diversity in nursing through youth mentorship.

In this paper we describe the Inclusive Mosaic project, a community-university partnership in an outer-city community in a large Canadian metropolis aimed at promoting diversity in nursing. The project brought together nursing student mentors with middle school and high school youth from diverse backgrounds in a mentoring program aimed at increasing participants' interest in, and confidence in pursuing, higher education and a career in nursing or other health profession. The concepts of emancipatory education, self-efficacy, and possible selves provided the theoretical foundation. Project processes, activities, and outcomes are described, and a post-hoc evaluation encompassing the project's strengths, challenges, limitations, and successes is presented. Recommendations to inform future research and education are also provided.