Discussion
The ROOT provides UK SLTs with a means of collecting and analysing outcomes data. Developing a digital solution meeting the requirements of SLTs working across a range of clinical groups, settings and with access to different information systems has been challenging. However, co-producing the ROOT with SLTs and using an Agile approach has been supportive in developing a user-friendly, intuitive tool that can assist SLTs with utilising their outcomes data.
The expanding outcomes data set is supporting the speech and language therapy profession to evaluate its overall impact within the local context. Table 2 highlights the range of clinical areas SLTs support, indicating dysphagia outcomes are most frequently collected. However, the data set will be skewed as individual sites contributed differing amounts of data (table 1) since caseload size was not controlled for, so this is not necessarily the most prevalent disorder encountered by SLTs.
The results show that positive, clinically significant improvement in one or more domains occurs in 77.1% of episodes of care (table 3) and is most often seen in four domains of the TOMs (26.5%). This is not surprising as speech and language therapy is a profession contributing to rehabilitation and enablement, which is broader than reducing the disorder alone23 24 and may reflect the holistic and personalised care provided by SLTs. Interventions include providing strategies to improve communication or swallowing, enhance participation socially, educationally and in employment, along with attending to the well-being of the individual and their family. As interventions will not always target all domains of the TOMs, it is not unexpected that there is rarely change in five domains (2.4%). Table 3 also indicates that 22.9% of individuals do not show positive change on the TOMs over an episode of care. Further inspection of the data would provide information on the types of individuals who do not make improvement, including individuals with progressive conditions, for whom maintenance of function or carefully managed decline is the expected outcome.
The ROOT is beginning to provide insight into the impact of speech and language therapy for individuals with different underlying medical conditions (figure 1) and receiving care from different sites (table 4). The data presented illustrates variation in outcomes between aetiology and service delivery. We recognise this is only descriptive and indicative, and requires further investigation in order to establish significance.
Figure 1 illustrates trends in the outcomes for individuals with stroke-related aphasia compared with non-stroke-related aphasia. Across all five domains of the TOMs, a higher proportion of individuals with stroke-related aphasia show improvement post-intervention. Speculation on the reasons for this include better and more immediate access to services (such as dedicated stroke units and rehabilitation teams) and possibly a lower level of complexity of needs (such as those experienced following traumatic brain injury, for instance, cognitive impairments). Only a few small studies have made comparisons between stroke and non-stroke aphasia25 26 and this data provides an opportunity to complement these studies with ‘real world’ data.
Outcomes for similar clinical groups can be compared through benchmarking, which ‘as a component of Quality Management, offers a continuous process by which an organisation can measure and compare its outcomes overtime with peer organisations and use the findings to inform management decision making’.27 Table 4 indicates some variation in outcomes between different sites for a given communication or swallowing diagnosis, reflected elsewhere in the literature.28 29 The ROOT total shows a clinically significant increase in every domain. Sites 1 and 2 are broadly in line with this average, while Site 3 achieves beyond this. Potentially, this is related to the service provision offered, different referral patterns or variation in the severity of impairment at therapy commencement. The reasons for this variation will need to be explored, which then could be considered by other services to support quality management.
This innovative and ambitious project has demonstrated the utility of ‘Big Data’30 and has equipped the profession with robust data to evidence its impact and use in national influencing. Outcomes data can be valuable in looking at ‘real world’ change across a range of contexts, without applying stringent participant criteria and should be used to complement and facilitate interpretation of the existing evidence base. Nonetheless, we acknowledge there are some methodological limitations. Outcomes are not compared with control groups, nor are variables controlled for within-groups, thus, isolating potential agents of change is limited in comparison to RCTs. Yet, the data is advantageous in other respects. For example, it contains information on individuals that tend to be excluded from RCTs.
While the ROOT has a notable volume of data, wider implementation of the ROOT would increase its validity. The main barrier to implementation has been delays in approval due to uncertainty around the new data protection legislation. To support prospective sites, an Information Governance Pack was developed31 summarising key information about the ROOT in relation to data processing, online security and risk mitigation. As more SLT services use the ROOT, we can be more confident in assumptions about the data being representative of the range of services provided by SLTs across different clinical groups and settings.
The data in the ROOT is already beginning to demonstrate its value and case studies are emerging which document use of the ROOT to highlight the impact of speech and language therapy to senior directors, commissioners/funders and evaluate where interventions are having most impact and identify areas for improvement.32–34 Future work should focus on application of the ROOT data to answer clinical uncertainties and for quality management. Furthermore, as the volume of data increases, it may provide insight into complex clinical questions currently unanswered by the traditional research methods.
This project illustrates that the implementation of a digital solution is about more than introducing new technology. This is part of a larger system change, and working collaboratively to identify what data to gather, how to gather it and make use of the information, along with consideration of the practicalities and minimising the barriers to implementation, is essential. We have shown that our profession can use digital innovation to collectively demonstrate the impact of speech and language therapy, with the potential to inform the way we deliver care and improve outcomes.