Abstract
This piece is provided in honor of the late Brooke Ellison, a brave advocate within the disability and paralysis community.
The integration of rehabilitation and assistive technologies (Rehab & A-T) has become pervasive in the lives of People With Disabilities (PWD), facilitating physical, emotional, and spiritual function and interaction within the world on a daily basis. Yet, all too often, the end-user is not included in the development process and assumptions are made about performance, satisfaction, preferences, and access. 1 Outcome measures have been developed and tested to evaluate user satisfaction such as the Quebec User Evaluation of Satisfaction with Assistive Technology (QUEST). This tool serves as a reliable and valid means of assessing A-T outcomes from a user’s perspective 2 ; however, these measures are often used post-production rather than earlier during the design phase. Here, we review the Rehab & A-T ecosystem, delve into the emergence of Co-Development principles, and reinforce the imperative of connecting end-user stakeholders throughout the A-T design and development testing, assessment, provision, fitting, training, and maintenance continuum.
The role of technology for PWD to navigate the world
There is an ableist perspective that PWD live within the medical model of disability, which defines disability as a biological or medical dysfunction, resulting from illness, injury, or other medical causes, which is in need of an intervention or normalization.3,4 An alternative view is the social model of disability, which defines disability based on systematic, environment, and attitudinal barriers. There have been efforts to merge these models through the development of the International Classification of Functioning, Disability and Health by the World Health Organization. 5 However, this model has not been widely adopted due mainly to awareness and influence on social policies. 6
Additionally, the social model of disability can be overlooked in the Rehab & A-T development process by not taking into consideration environmental barriers and other social determinants of health. Case examples of this exist in a variety of areas such as the initial rejection of the cochlear implant by the deaf community, 7 the limited use of screen readers by those with visual impairments hindered by website design, 8 and the over 50% abandonment rate of prosthetics for those living with upper limb amputation. 9 PWD live within both the medical and social models of disability. Technology must be designed to address both models. Traditional A-T development has focused on the medical model with a clinician identified as the expert; however PWD using these devices everyday will quickly surpass their knowledge level of use. PWD, on the other hand, use the technology predominantly within the social model. In this context, PWD apply A-T needed to help create and design access to desired activities to facilitate community interaction. 10 There is a need for a fundamental change in the design and provision of A-T to include users in the design process. 10
In addition, the interpretation of the “end-user” can be re-defined as a diverse spectrum of stakeholders, including not only PWD, but also family members, personal care attendants, providers, distributors, funders, and others. This necessitates a profound understanding of the intricate network of decision-makers or gatekeepers within the Rehab & A-T ecosystem. The ramifications of excluding end-users uncovers issues of addressing problems only secondary to the need, such as abandonment, additional expenses, absence of maintenance options, and ethical implications; each scenario necessitates the imperative of an inclusive approach. For instance, we cannot expect developers themselves to identify what portions of development are “highest priority”, “important” or have any “ethical implication”; members of the users’ personal community and the culture at large must be included or at least conferred for the best assurances of ethical adherence. 11
The rise of co-development principles
Co-Development principles are a paradigm shift from the traditional process of Rehab & A-T development. Essentially these principles assess the value proposition in the contexts of usability, adoptability, desirability, accessibility, affordability, and adjustability of potential solutions. Inclusive design approaches necessitate solutions to address core end-user needs that reduce or eliminate secondary problems. Put into practice, Rehab & A-T solutions go beyond a functioning piece of equipment, and become a reflection of the specific user, not unlike a unique style of fashion. Co-development principles meticulously consider the impact on end-users. 12
The principles in co-development are segmented into three key areas: Technology & Society, Knowledge & Power, and Individuals & Institutions. 13 Each of the three principle areas can be defined by their application in the design process. The area of Technology & Society refers to the application of the social context of technology, the recognition of socio-cultural, historical, and geographical factors, as well as the promotion of continuous improvement within the context of society. Knowledge & Power addresses the interrelationship of stakeholders to reduce power imbalances, build relational trust, and embrace the diversity of knowledge and discipline. The third area of co-development encompasses Individuals & Institutions to identify networks, harness multi-level collaboration, and create shared benefits. The application of all three areas can lead to a comprehensive co-development process.
Practical frameworks and tools have been developed around the world. The A-T chat model created in Australia used co-design methods to build a peer-led, online community of over 5000 users and facilitated engagement with concepts of risk, competency, scope of practice, and capability. 14 In Finland, a team created the Participatory Research Partnership (PaRe) model, which was co-developed in a multi-phase process including a literature review, workshops, and focus group discussions. 15 The implementation of engagement frameworks has its challenges including building organizational structures, measuring performance, overcoming bureaucracy, applying fair compensation, and education of the involved stakeholders.16,17 Tools exist for co-development in Rehab & A-T, such as those developed by the Patient-Centered Outcomes Research Institute (PCORI), 18 the National Health Council, 19 and the Integrated Knowledge Translation Guiding Principles 20 group. The key is implementation and participation. Many of the practical toolkits also provide examples of real-world applications.
Connecting end-user stakeholders: Gaps and opportunities
Gaps in the Rehab & A-T development process become apparent with the exclusion of stakeholder engagement. One major gap is the absence of standards to require multi-stakeholder involvement. Another is the lack of transparency of third-party funding organizations, which becomes a grave obstacle to access. In addition, there is an absence of Universal Design principles 21 for Rehab & A-T to build flexibility and personalization into various solutions. Fostering stakeholder engagement can open opportunities for knowledge dissemination, such as the co-development of an assessment and sizing module, fitting and operational instructions, training manuals, and maintenance instructions and intervals. One practical example of fostering stakeholder engagement is in the development of the ArthristisPower patient-powered research network. This smartphone application has over 17,000 users and is used to not only collect data but also to disseminate information. It was created using a multi-stakeholder model and is an iterative learning network.22,23 Another example of co-development in practice is the FDA-cleared Tidepool, an automated insulin dosing application24,25 that was developed through a multi-stakeholder model. With over 650,000 users, the system allows for patients, caregivers, and physicians to monitor insulin levels and provide dosing recommendations. These are just two examples of utility and optimization by connecting with end-user stakeholders.
There is also an opportunity to provide best practices including a toolkit for providers and developers to help drive inclusive design and co-development. This includes strategies for connecting with potential end-users, for example attending adaptive sports programs and communal events where PWD convene and interact. As practical use frameworks and toolkits are provided, they also need to evolve with the lessons learned from their utility. The multifaceted terrain of Rehab & A-T development promotes a comprehensive understanding of the considerations, principles, and stakeholder dynamics inherent to inclusive and universal design. Ultimately, the end product must enhance the efficacy and accessibility of Rehab & A-T to benefit the diverse array of end-users within society.
