Ethical challenges related to assistive product access for older adults and adults living with a disability: a scoping review protocol

The world’s demographic structure is changing dramatically due to population aging. The number of people who are 60 years old or older is projected to double to over 2 billion people between 2013 and 2050 [1]. The likelihood of having a disability and the severity of disability increases with age [2]. While estimates vary, up to one billion people in the world live with some form of disability and these numbers will continue to increase due to prolonged life spans [3]. In the years ahead, the use of assistive technology will become increasingly important as the prevalence of disability rises. Assistive technology is vital to people with disability in promoting self-management and independence, as well as helping them to perform daily tasks by compensating for physical, sensory, and cognitive impairments [4]. The United Nations Convention on the Rights of Persons with Disabilities also emphasizes the need for countries to ensure that persons with disabilities engage and participate fully in all areas of their daily lives and communities [5]. In defining societal obligations (article 4), the convention explicitly recognizes the important role that technology can play to address issues of basic human rights and fundamental freedoms.

Assistive technology encompasses a broad range of supports with varying terms and definitions used in the research literature, legislation, policy, and practice. A commonly cited definition of assistive technology (used in the Assistive Technology Act of 2004 in the USA) indicates that it is technology that can be used in both assistive technology devices and services [6]. In this case, an assistive technology device includes “any item, piece of equipment, or product system, whether acquired commercially, modified, or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities” and a service includes “any service that directly assists an individual with a disability in the selection, acquisition, or use of an assistive technology device” [6]. The International Organization for Standardization (ISO) in its classification of Assistive Products for Persons with Disability (ISO9999:2016) does not specify assistive technology services but includes “any product (including devices, equipment, instruments, and software), especially produced or generally available, used by or for persons with disability” [7]. The purposes of the included assistive products range from enabling participation; protecting, training, measuring, or substituting for body functions/structures and activities; to preventing impairments and limitations. ISO9999:2016 aimed to harmonize terms used in the World Health Organization (WHO)’s International Classification of Functioning, Disability and Health (ICF) [8]. The ICF includes Products and Technology as one group within its classification of Environmental Factors [9]. Assistive products and technology in the ICF are defined as “any product, instrument, equipment or technology adapted or specially designed for improving the functioning of a disabled person” and do not explicitly include purposes such as prevention of impairments and limitations. Classification is based on functions enabled by the products and technology and includes the following: personal use in daily life; personal indoor and outdoor mobility and transportation; communication; education; employment; culture, recreation, and sport; and practice of religion and spirituality.

In spite of the high need for and use of assistive technology, unmet needs exist for access and procurement [10]. Access is related to the fair and just distribution of resources to ensure individuals have equitable opportunities to obtain appropriate products/services based on their needs [11]. On the other hand, procurement refers to a transparent process that involves the effective delivery of quality product/service to an individual at the right time and place [12]. A review of the literature reveals that significant challenges exist in addressing the human rights of persons with assistive technology needs in relation to access and procurement, as significant disparities in the provision and access to assistive technology programs have been found in several countries [13‐15]. For instance, funding and services are highly fragmented with assistive technologies provided through both federal and provincial agencies, non-profit and charitable organizations, and private insurance providers [10]. Policies for access through governmental agencies are regionally defined, and access is often restricted according to age and physical and medical needs [16]. Funding for assistive technology related to cognitive disability and functional and participation needs is particularly difficult to access [17]. Fragmentation and variation in policies and services result in the failure of systems to provide for those who need assistance, to meet our societal obligations for equity of access to assistive technologies and opportunities, and to address economic concerns. Furthermore, despite the surge of research and development in technologies from other sectors, and many promising technologies (including tele-health, tele-homecare, and information and communication technologies that can support the needs of a growing population of users), policy related to access and procurement has lagged in responding to innovations and the growing demand from users [14, 18]. There is a clear urgency for a coordinated research, implementation, and policy response to assistive product access and procurement that is proactive, responsive, and sustainable to match technology advancement. There is also the need to examine the ethical concern of equity in the availability of new assistive products to address the need for the implementation of the human rights of persons with technology needs in our society, including people acquiring disability as they age, aging with a disability, and aging well.

We chose a scoping review as our approach because (to our knowledge) the ethical challenges related to assistive product access and procurement and the implications of these have not been comprehensively reviewed, and an important first step towards such a comprehensive assessment is to systematically map the key concepts, main sources, and types of evidence available to identify gaps in the research area. We will use established systematic and transparent approaches to conducting scoping reviews [19], which include five stages: (1) conducting broad searches to identify potentially relevant literature, (2) refining selection criteria, (3) reviewing search results, (4) mapping literature according to conceptual areas of interest, and (5) summarizing results. This protocol is not registered with PROSPERO, which does not provide registration of scoping review protocols.

Underlying our scoping review approach is an emphasis on systematically and transparently mapping the literature to better understand the ethical challenges related to assistive product access and procurement. We will disseminate our scoping review findings by summarizing the key implications and lessons learned about the ethical considerations for addressing barriers to assistive product access and procurement. Our scoping review will help inform future work towards developing ethical decision-making frameworks and models that are useful for policymakers, stakeholders, and researchers in addressing equitable access and procurement of assistive products.

One component of our knowledge translation plan is to disseminate the findings through at least one conference presentation and to submit at least one manuscript to an open-access, peer-reviewed journal. Another component of our knowledge translation activities is to utilize our scoping review findings to prepare a plain language brief (called a “citizen brief”) that will serve as key input for citizen panels that we plan to convene in Canada [22]. The panels will identify citizen values and preferences for (1) improving access to assistive products that enable health, participation, and well-being in ways that align with their values and (2) establishing a proactive, sustainable, and responsive approach to ensuring access to match the pace of rapidly advancing technologies. Findings from the citizen panels will be used to contribute to the development of a more detailed evidence brief that will be used to inform a stakeholder dialogue with key leaders and decision-makers (policymakers, stakeholders, and researchers) in Canada [23]. The evidence brief will mobilize the best available evidence from the scoping review findings to frame the factors contributing to the problem related to assistive product access and identify policy options to address the problem and implementation considerations to address these challenges. This approach on stakeholder engagement will help mobilize our scoping review findings to inform policy and practice in Canada.