Inclusive research: Making more impact through accessibility and collaboration

Abstract

In health, the value of research evidence in informing practice, service decisions and funding is well established and an embedded part of everyday practice (e.g., Bennett & Bennett, 2000). However, there are concerns about the state of health research for these purposes. The timeframes for embedding robust research findings into practice are slow (often cited at 17 years) and even with focused efforts in implementation science, practice is often lagging behind research (Juckett et al., 2019). In addition, there can be gaps or quality concerns within published research about particular practice areas, populations and settings. More broadly, some areas of research are also noting a replicability crisis where earlier findings are unable to be replicated in subsequent studies, bringing the validity of original findings into question. The challenge of research waste, where expensive research may be unpublished, unread or unable to be used in practice is also challenging researchers to focus on and disseminate useful, prioritised, needed and high-quality research (Chalmers et al., 2014). These research challenges should raise concerns for occupational therapists, health services and consumers of health services, and has led to proposed changes in the way research needs to be conducted and applied (Korbmacher et al., 2023).

We believe an important tool to begin to address many of these concerns is inclusive research. We are a team of researchers who contribute to allied health research and have either or both living experience of disability/health conditions and health or technology qualifications. By inclusive research we mean research which is conducted in partnership with interest holders in the research, particularly living experience experts/consumers, families, communities, clinicians, managers and policy makers. In addition, we contend research should use inclusive ways of defining and engaging with participants to collect data. Finally, dissemination and implementation of findings should be planned for and enacted within the partnered research, ensuring the research is usable and used.

Partnering with interest holders, particularly those with living experience, has many benefits for the planning and conduct of research. These partnerships can allow for meaningful prioritisation of research areas, inclusive design and planning of projects and consideration of implementation requirements. It can allow for troubleshooting research challenges (e.g., recruitment, communication about the study, online approaches to engagement, outcome measurement and design of implementation strategies) (Liddle et al., 2022). It can also support research dissemination, ensuring that those people who will use, or should know about the research, can engage with the information in an accessible format (e.g., easy-read, audio and visual formats). Importantly, these partnerships need to be adequately resourced, supported and inclusive in their approaches. The engagement needs to be genuine, involving a diverse group of partners and occur throughout the research and dissemination process, rather than occurring in a token or one-off way. Having formal programs and roles to support ongoing partnerships and relationship building, organisational recognition of their value, and an open collaborative approach that involves capacity-building and up-skilling up all involved can improve the success of these engagements (e.g., Liddle et al., 2022). Members of this team have begun involvement in research as a participant, and developed experience, becoming advocates, investigators and paid research assistants. This team also has experience of applying for grants and conducting grants created from ideas raised by people with living experience, (including grants led by people with living experience). As the relationships needed for partnered research take time and resources, we would encourage researchers who do not have existing connections with living experience experts, to consider beginning this process, including making contacts through formal advocacy and consumer and community involvement organisations (e.g., Dementia Australia, Health Consumers Queensland). Occupational therapy is showing increasing uptake of this way of researching but will need to continue to grow skills and practices in this area (e.g., Aplin & Liddle, 2022; Cox et al., 2020).

To enable valid and meaningful findings and a usable evidence base, we also must ensure that all research is conducted inclusively. This means designing and conducting projects that are accessible and acceptable to the diverse range of people that the work is relevant to. We need to critically reflect on research and outcome measurement design and offer inclusive ways of working. This may include challenging traditionally restrictive inclusion and exclusion criteria and ensuring that there are multiple ways of participating in research that are genuinely accessible and acceptable. Partnering with stakeholders can support this process. In health research, we have a long history of excluding people who are affected by the research, with fairly common exclusions being cognitive impairment, communication changes, comorbidities and requiring language translation. Given the nature of health practice, this risks the evidence base being developed without considering key people who will be affected by the findings (O'Connor et al., 2022). We can begin to address this exclusion by developing inclusive consent and assent processes and research participation/data collection approaches. Allied health professionals in partnership with living experience experts are well placed to develop these (e.g., Campbell et al., 2023). Communication access can be supported through the application of simple principles, such as including images, increasing font size and white space and bolding of key words, and the use of multiple modalities including audio and video (Finch et al., 2024; Hinckley & El-Khouri, 2023; Rose et al., 2003). Technology can also be harnessed to share research outcomes in formats that are accessible and customisable. One such example is the co-designed aphasia research library (https://www.aphasialibrary.org/).

We would recommend in designing research, participants are offered their choice from multiple potential ways of engaging. This may include offering the options of having support people involved; online or in person options; synchronous or asynchronous participation; and written or spoken ways of engaging (e.g., Worthy et al., 2023). Moving away from rigid protocols where all people must participate in exactly the same way will support more diverse and genuine participation (e.g., Burton et al., 2024). If participants are able to choose accessible and acceptable ways of participating, this is likely to support ethical research practices, recruit truly representative samples and reduce participant burden. While it may be less neat to explain the range of ways in which data were collected, it is likely to support the quality of what is learned. It should also be noted, that many research participation strategies, developed to ensure people living with dementia or aphasia can participate in research, can be helpful and well-received by participants without these conditions. Offering, for example, appointment reminders, brief preparatory information in different formats, scaffolding preparation for sessions, choosing times or ways of engaging that are optimal for function, online (and asynchronous/in your own time) options and the option to have support people attend have been appreciated by many participants. Studies deploying these and other flexible and inclusive strategies have engaged with participants that are often difficult to engage in research including people from rural and remote areas, people with multiple demanding roles (professional, caregiving etc.) and people with disabilities (Liddle, 2019). This undoubtedly enriches research and findings. In addition, enabling inclusive participation in research is likely to lead to finding and practice that is more effective and considers needs related to cognition and communication.

Health research, including occupational therapy research requires attention to ensure its broad relevance and true impact. Applying inclusive methods, developed in partnership with living experience experts, is one way of beginning to address this.

The authors declare no conflicts of interest.