Healing Right Way randomised control trial enhancing rehabilitation services for Aboriginal people with brain injury in Western Australia: translation principles and activities

Principled practice in knowledge translation and exchange research

Our approach to KTE is situated in the broad field of Implementation Science (cf. Beidas et al. 2022). It is so broad that it sometimes stymies efforts at enacting authentic knowledge exchange. Graham et al. (2006) identified 29 terms relating to the process of translating knowledge to action. By 2017 over 90 terms had been identified to describe the use of research knowledge (Jancey et al. 2017). A Google search in 2023 by the authors of this paper of the term ‘Implementation Science’ yielded 1,050,000,000 results and the term ‘knowledge exchange’ yielded 1,270,000,000 results. We live in a vast data ecosystem wherein the gap between what we know and what we do is far greater than the gap between what we know and what we don’t know: the ‘know do gap’ (Bammer et al. 2010). The following provides a brief summary of how we negotiated this vast ecosystem to enact knowledge exchange in a complex cultural setting. The sheer weight of information available to us in the so-called information age can be overwhelming, and authentic translation and exchange practices must be able to ‘cut through’ the noise. Authentic KTE will help to close this gap.

Broadly speaking Implementation Science is the process of ‘getting the research rubber on the road’ (Drew 2015). According to the World Health Organization (2016), Implementation Science is the trial of how new learning from research may be used, embedded or implemented in ‘real-life’ settings. ‘Implementation [science] is the constellation of processes intended to get an intervention into use within an organization’ (Damschroder et al. 2009, p. 3). It is important too, to recognise that Implementation Science is a constellation of social processes within a complex social, cultural, economic and political context enacted in equally complex geographical, organisational and individual settings (Damschroder et al. 2009).

It is important to note, however, that the team did not start Healing Right Way with an implementation plan, although it is evident from the implementation journey described below that many elements of authentic and culturally secure translation and knowledge exchange were embedded in the implementation practices of the trial team. The brief introduction to the principles and practices of knowledge translation below outlines some of the key issues and challenges and culminates with the set of principles that guided the KTE process (Beidas et al. 2022; Stensland et al. 2022). The trial team was committed to principled practice as outlined below.

It is self-evident that KTE is crucial to the successful implementation of new research findings (Beidas et al. 2022). Zhang et al. (2022) emphasises knowledge exchange as ‘knowledge bridging’ (p. 531). In clinical trials, knowledge exchange and implementation efforts pose particular challenges and have often suffered from poor implementation practices (Stensland et al. 2022). Damschroder et al. (2022a) also lamented that context often conspires against evidence-based innovations and that our efforts at knowledge exchange must grapple with both describing and analysing the context within which we are attempting to enact knowledge exchange activities. In planning for Healing Right Way we were concerned with the processes for ensuring that the learnings and outcomes from the trial were adopted and embedded in the everyday practice in complex health settings. In addition to the outcomes of the trial itself (which was in and of itself a knowledge exchange opportunity as suggested by Stensland et al. 2022), as noted above, the research process itself was a social, cultural, political and economic practice that offered opportunities (and threats) for more expansive knowledge exchange. McGrath (2012) said that in the field of health this is a ‘process concerned with ensuring that information gained from research is made readily available to policy makers, service providers, and consumers in a user-friendly way that maximises the practical application of the findings’ (p. 163). McGrath (2012) also went on to say that many researchers lose sight of the fact that research is not an end in itself but should make a contribution to better health outcomes.

A second important issue in research is that of confronting the troubling history of research practices that have ill served Aboriginal and Torres Strait Islander peoples and communities. There is a legacy of research practices that primarily served the interest of the research but delivered little if any dividend to the researched communities (Smith 1999; Fredericks 2008; Gray and Oprescu 2016). While much has been achieved to ameliorate these inappropriate practices, Indigenist scholars have noted that the ills of past practice may be revisited on the burgeoning field of knowledge translation and exchange (Ninomiya et al. 2017). Nevertheless it has not escaped the critique that knowledge exchange as a methodology has not fully embraced the complexities of implementation in cultural contexts (Ellison 2014). To guard against this potentiality, KTE should be ‘Indigenously led sharing of culturally relevant and useful health information and practices to improve Indigenous health status, policy, service and programs’ (Smylie, cited in Indigenous Peoples’ Health Research Centre 2005).

A third important point is to understand the distinction between first, second and third generation knowledge production (Graham et al. 2006). According to this conceptualisation, knowledge passes through a series of filters to make the knowledge more accessible. First generation knowledge is essentially ‘hard’ scientific knowledge generally produced in the primary research phase. Second generation knowledge involves a process of synthesising available knowledge on a given topic or area to distil the essentially relevant information and to make it more comprehensible, while third generation knowledge refers to the knowledge tools or products designed to ensure that ideas and practices are adopted and used (Graham et al. 2006; Thomson 2012). The KTE activities for this trial aimed to focus on second and third generation knowledge products, though again it is recognised that the research process itself was and is inherently translational.

A number of principles have been identified in the literature that guided the principled practice of KTE for this trial (summarised in Fig. 1). The work of the trial sat in the intercultural space (Dudgeon and Fielder 2006; Nakata 2007) and guarded against undertaking KTE activities that are monocultural, colonial or appropriating in favour of work that is authentically situated and viewed through the dual lens of whiteness and Aboriginal and Torres Strait Islander Terms of Reference (Indigenous Peoples’ Health Research Centre 2005, pp. 5–7; Drew et al. 2010; Dudgeon and Walker 2015; Smith 1999).

Fig. 1.

Principles of KTE recommended for use in trials within an Aboriginal and/or Torres Strait Islander context.

The trial team committed to wise and principled practice (Ninomiya et al. 2017) that was culturally safe, responsive and secure, decolonising, socially just and transformative (Smith 1999; Dudgeon and Walker 2015) and strengths based (Ciofalo et al. 2021; Kennedy et al. 2022). The technical principles for the production of second and third generation knowledge include a commitment to co-design, co-production and co-construction processes (Ellison 2014; Thackway et al. 2017), to produce knowledge products that are timely, accessible and relevant (Jancey et al. 2017), that engage multiple modalities including audio, visual, tactile and kinaesthetic, and are fit for purpose.

An overarching goal of knowledge exchange is to enhance the critical health literacy of key audiences. Critical health literacy includes not just fundamental and scientific health literacy but also, and importantly, civic health literacy (the capacity to interrogate, comprehend and respond to the ideological and motivational underpinnings of health policy and practice) and cultural health literacy (the capacity to appreciate the importance of cultural health knowledges and their intersection with the dominant cultural narratives in health policy and practice) (Zarcadoolas et al. 2005).

What did we want to translate from Healing Right Way?

A series of meetings and workshops were held with members of the KTE team in the first half of 2019. It was identified that the reporting of the statistical outcomes of the trial overall was a specific piece of knowledge that would be exchanged and complemented by the process evaluation results. The economic evaluation would also provide highly relevant knowledge to, for example, the trial’s audience of policy makers. It was identified that the knowledge that would emerge from these aspects of the trial would merge with and support the three translational and knowledge exchange components identified by the team. These included the research outcomes, insights and learnings relating to: (i) the role of Aboriginal Brain Injury Coordinators (ABICs), (ii) the cultural security training (CST) and (iii) the research process.

Who did we want to translate to?

The knowledge needs of different groups and individuals in the research process were diverse. Stakeholders in Healing Right Way ranged from the Aboriginal people with brain injury and their families to health service providers, advocacy groups and policy makers. It is important to identify not only the audiences for the KTE knowledge products, but also their specific needs and learning styles. The knowledge needs of a Senior Policy Advisor to the Minister are likely to be different to the needs of a community advocacy group or a health practitioner. The key questions the trial team asked are outlined in Fig. 2.

Fig. 2.

Key questions asked by the trial team surrounding translation audiences.

How would we facilitate knowledge translation in complex contexts and settings?

Earlier we identified Implementation Science as a constellation of social processes within a complex social, cultural, economic and political context enacted in equally complex geographical, organisational and individual settings (Damschroder et al. 2009). The Damschroder et al. (2009, 2022a, 2022b) Consolidated Framework for Implementation Research (CFIR) was used as the basis for the Healing Right Way Process Evaluation (see Skoss et al. 2021) and as such provided a strong basis for translation planning. The CFIR is one of the most cited frameworks for Implementation Science and knowledge exchange and the Damschroder et al. (2009) article is listed as one of the top five most accessed articles in Implementation Science (Damschroder et al. 2022b). The CFIR has five domains, each with a set of elements or constructs to guide thinking and planning for implementation research or practice. These are the Outer Setting (the broad trial context), the Inner Setting (the actual setting in which the intervention occurs), Intervention Characteristics (e.g. content, timing, mode), Individuals (roles and characteristics of people involved), and Implementation/Process (methods and strategies used to implement the intervention). In 2022, Damschroder and colleagues proposed an ‘Outcomes Addendum’ to the CFIR including implementation and innovation outcomes (Damschroder et al. 2022a). In essence, the framework provides a systematic process for undertaking an environmental scan of the barriers and enablers of KTE for each intended audience.

Measuring the success of the translation and knowledge exchange activities: impact and evaluation

Measuring the impact of KTE activities in complex landscapes is inevitably, and as evident in Healing Right Way, a complex task. The findings of the process evaluation are an important source of data relating to the process elements of the KTE activities. It is also very important to recognise what can reasonably be measured and, as part of this, to recognise the plausible causal pathways of KTE activities. It is unlikely that a causal link in this trial will be demonstrated between KTE activities and health outcomes. At best, the link will be indirect and mediated through the workforce. In Healing Right Way, KTE activities were designed to have an impact on workforce productivity, efficiency, skills development, knowledge and confidence to name a few. Almost all workforce policy and strategy documents make the inferential leap from this to more positive health outcomes.

Impact and evaluation measures included surveys of participants related to their hospital experience (N = 81 of total 108 at 12 weeks post injury and N = 66 at 26 weeks) and health professionals who participated in the cultural training workshops (surrounding their learnings and the usefulness of the training) (N = 201 of 250 total attendees). Interviews were conducted with the research management team (N = 4), ABICs (N = 6 of total 9) and other research staff assisting in recruitment and data collection (N = 15). Measures of rehabilitation service delivery related to occasions of service (allied health) were also undertaken (Skoss et al. 2021).

Stensland et al. (2022) offers a useful example of how the implementation outcomes of clinical trials such as acceptability, adoption, appropriateness, feasibility, fidelity, implementation cost penetration and sustainability can be assessed. Damschroder et al. (2022a) also drew a distinction between the anticipated outcomes such as ‘adoptability’, ‘implement ability’ and ‘sustainability’ and actual outcomes such as ‘adoption’, ‘implementations’ and ‘sustainment.’ These principles (elaborated upon in Fig. 3) were incorporated into both the trial’s main design and the process evaluation and were incorporated into translation planning.

Fig. 3.

Principles of implementation as outlined by Lengnick-Hall et al. (2022).

Knowledge translation and exchange … an ongoing journey

KTE was conceived of as an integral part of the trial engagement processes since inception. As such, there has been a systematic approach to knowledge sharing and exchange throughout the trial. The partnership nature of the trial in a way provided the ‘infrastructure’ and groundwork for translation in that, in principle, translation was a goal for all involved, and relevant translational relationships were already formed prior to the end of the trial when ultimate results of the trial became available.

The innovative and partnership components of this trial made it complex in that simply by undertaking the trial, effective transformation of services already took place during the trial (Stensland et al. 2022). For example, by meeting regularly with partners, their awareness of issues related to Aboriginal patients with brain injury and their families was potentially heightened (knowledge exchange). In discussing patients’ eligibility for the trial, some medical staff also started to re-think patients’ eligibility for rehabilitation and avoid possible stereotyping of some patients as being ineligible for rehabilitation due to past lack of attendance at appointments or complex medical histories. Assumptions that such patients would not be able to be followed up or that patients with several comorbidities may complicate research findings, when in fact such profiles were common and of great significance to the trial, had parallels with clinical practice. The trial also had the potential of raising the profile of brain injury in the partner Aboriginal Community Controlled Health Organisations which, until recent times (since the advent of the National Disability Insurance Scheme), had not considered rehabilitation, disability or allied health services relating to brain injury as part of primary care core business.

Tension exists within an RCT setting between necessary knowledge exchange/casual information giving/problem solving as part of the partnerships and as exemplified above, and undertaking activities that might contaminate the intervention effects of the trial (Stensland et al. 2022). The real-life context can sometimes have an effect as well as the specific trial intervention. Such impact is quite possible/probable and could be viewed as a potential translational impact, although of course not measured as part of the trial.

What were the key messages to exchange and translation from Healing Right Way?

A number of key messages (see Fig. 4) emerged as the research progressed and as part of the ongoing process evaluation. It was also clear that the translation and exchange of key messages would depend on the audiences identified.

Fig. 4.

Examples of key messages to be exchanged and translated.

Prior to the end of the trial

As noted above, a number of translational activities occurred during the trial that represented knowledge exchange in the area under focus. See Appendix 1 for a detailed list of activities that occurred during the trial life cycle that were opportunities for authentic knowledge exchange.

After completion of the intervention

Following completion of the trial interventions, the research team undertook a number of translation activities with a variety of audiences. These included face-to-face and online feedback sessions with the executive members of the country health services where the trial took place, ACCHOs involved, hospital-based investigators, clinicians and research staff in all regions involved; face-to-face and on-line meetings with an Aboriginal Health Leadership group comprising leaders of Aboriginal health policy and strategy across country and metropolitan Western Australia; and meetings with representatives of the Stroke Foundation and other brain injury organisations.

Ongoing liaison with policy makers aims to achieve sustainability of the Aboriginal Brain Injury Coordinator positions within the WA Department of Health, and partnering organisations that hosted the ABICs, which included an independent community nursing service and ACCHOs. Future endeavours include the embedding of the Cultural Security Training package within organisations such as the WA Department of Health and continued input into national clinical guidelines and dissemination of results through publications and conferences. A video or animation of key messages and findings of the Healing Right Way trial is to be developed, which will be shared on social media and online, with partner organisations being able to share and disseminate; this was a modality also requested by trial participants.

Impact and evaluation

Discussions regarding incorporation and modifications of the ABIC position and CST package into services with policy makers and managers are ongoing. Translational challenges include transfer/changes of senior staff who originally supported the project and the multiple management structures to engage with across multiple service responsibilities. While budget restrictions limit funding of new services, the economic evaluation will develop the future business case to enhance rehabilitation services for Aboriginal patients. A strategy is being developed to facilitate meetings with time-poor policy makers and bureaucrats, with the first level feedback to services being positive thus far.

While translation and knowledge exchange were perceived as inherent in the nature of this partnership trial from the outset, one of the trial’s limitations was the lack of initial budgetting for translation activities. Hence, the activities undertaken to date were funded within the existing budget and staffing for the RCT administrative management. We do not claim to be undertaking all of the additional recommendations above, given limited resources, but are endeavouring to undertake at least some. Since the planning of Healing Right Way, the funding climate has changed and it is now more usual for trials to include translation funding. This is strongly recommended in future projects from the outset of planning in order to accommodate the increasing need for, but complexity of measurement of, impact.