Prompt dementia assessment is a national priority, for the government, NHS and people with fears that they are in decline. Historically, this task has fallen to NHS memory clinics – where the increase in demand led to significant pressure and waiting times.
Dementia assessment has spread, as a role, to include many nonespecialist clinical staff including junior nurses, GPs and psychiatric nurses as services strive to meet demand.
A core component of this assessment is a cognitive assessment, one of the primary markers of dementia onset alongside a relevant history and observed change in functioning.
Beyond the clinical need is a very public drive to improve research in this area – with early identification of those with dementia being needed to support clinical trials.
The collection of data and support of such trials is an added demand on services – with success in this area being hampered by the demand and the primary task of diagnosing patients.
We (two NHS Clinical Psychologists) sought to identify the rate of error in NHS memory clinics, when assessing dementia-related cognitive impairment – to reduce any observed error with a digital tool alongside improving efficiency via technology, and to support the national endeavour to improve research in this area of obvious need.
Clinical Resourcing: to support the ability of none-specialist staff in being able to reliably assess cognitive impairment in those with suspected / re-assessed dementia, thus reducing the need to rely on specialist staff who are less available and more costly.
Time efficiency: to support the reduction in time and resource required to deliver a robust assessment of cognition and to return this to both paper and digital records, where appropriate.
Financial: to provide a tool that would have no license cost requirement for clinical teams – being a FREE tool.
Accuracy / Reliability: to improve the ability of all staff assessing patients to undertake a psychometric assessment of performance, with no psychometric experience or knowledge.
This is a key objective, with the reliability of assessment being central to a positive patient experience – as this is a terminal illness that requires accurate assessment. Flexible working: develop a system that is independent of location or internet connection at the point of patient contact, this being required to meet the Community base of many dementia assessment teams.
Research efficiency: effortlessly collect assessment data, for research, where consent was provided – removing any additional need for clinician / patient time to participate in dementia research.
We completed a large NHS audit which evidenced that 78% of assessments of cognition using the primary tool (ACE-III) were significantly error prone due to human error.
This was across a broad team of ‘specialists’. In 2014, we delivered ACEmobile (for clinicians) to the UK and Australia for FREE. This is an iPad App that took 2 years of R&D to develop – utilising the approach used by clinical trials methods and software usability research to design a digital tool that guides all clinicians through a robust assessment and both lifts the quality of assessment significantly but also introduces a raft of efficiency bonuses.
This App remains available, at no cost to the NHS or other health services. The project faced many obstacles, not least that we did not have experience in this area. We learned how to build and lead a development team, run usability research, lead engagement focus groups and all of the governance requirements to release.
In learning to deliver this project -one of the leads, Dr Newman, went on to deliver in other areas and is now an NHS Innovation Accelerator Fellow and lead for eHealth Innovations in the medical school and a number of NHS Trusts. We have had continuous positive feedback.
Teams frequently communicate that they are amazed this tool is free and we are often asked how much a year on year license would cost. The answer, it’s free.
ACEmobile is free (yes, we say this a lot). It is marketed via conferences, specialist press and through clinical networks. In fact, some of the evidence supporting its use was actively held back from public media for risk of sensationalist use.
The underlying tool (ACE-III) is already very well-known and so the market is well established. To support teams we developed a website that offers video training, a frequently asked questions section and a proposal template for their own data governance teams to review the App.
We know of many teams that now use this tool – beyond dementia, including head injury rehab, occupational health teams etc. This is in accord with the general use of ACE, which is the primary screening tool in dementia but also used in many other cognitive impairment assessment clinics.
Any successes are disseminated through specialist publications direct to clinical teams or via presentations to charity boards / research conferences. There are now over 1,100 clinical sites registered as users with 20+ new registrants per month. We regularly receive very positive feedback and have seen the App adopted into the protocols of large-scale projects such as the ongoing UCL 1946 cohort study (5,3562 participants).
We evidenced in a peer-reviewed study, using usability methodology, that none-specialist junior clinical staff could complete an assessment of cognition, as required in a dementia assessment, at a standard that is 85- 93% more accurate than the audited ‘average’ specialist clinician using the none-digital tool in specialist services (attached).
ACEmobile was shown to reduce the assessment time by an average of 20%. However, this does not include the additional time savings of the App providing multiple reporting methods (digital and paper).
Remains FREE, 4 years later. This is a zero cost - high return for health services that likely reduces costs for teams. ACEmobile supports offline use and provides both cloud-based storage, local storage and team sharing modes.
The App fully functions offline, providing a forced sync mode every 10 assessments to ensure data safety. It is therefore usable in all contexts. We have now (with consent) collected near 5,000 clinical assessments to support a raft of ongoing projects. This is effortless for the clinicians and patients as a means of engaging in dementia research.
The App is developed by a medical school and an NHS Trust, in partnership with an Australian research centre (holding the IP to the paper version of ACE). All of these parties actively supported the project with staff time, legal support, tech support and a positive agreement to host a free clinical tool.
The App is designed for clinicians and so clinician involvement was key. We ran repeated engagement studies, including 2 usability studies that utilised 100 clinician volunteers to use the App in early development stages and support our re-design. This underlies the key to the App’s design being so effective at reducing error.
The experience is almost totally unchanged for the patient, as this tool is to change clinician behaviour – not patient experience. We have received responses from numerous PPI panels we presented to – including charities and specialist conference workshops. Again, these steps underly the acceptability and value of the project.