This blog is part of the ‘Highlights from Glasgow’ collection of articles, where you can read about the content of some of the talks and posters presented at the 29th International Symposium on ALS/MND.
Where to start on a subject as wide and varied as technology and MND?
Indeed, this problem is not just limited to a simple blog post, it is a challenge for us as an MND charity faced with a proliferation of potentially beneficial technological developments in smartphones, wheelchairs, and exoskeletons to name but a few.
Fortunately, there is a fundamental question that can help us make sense of it all and it is a question that stems from our Association values – What does this mean for people with MND? I’ll be trying to answer this question as part of my summary of technology talks from our 29th International Symposium.
Much of the content that was presented related to the use of technology in clinical trials, so let’s start by considering clinical trials and what we want from them:
- We want them to be efficient and report results quickly – this means they will be cheaper, so we can do more of them and secure a cure or effective treatment for MND more quickly.
- We also want the trials to be reliable and give accurate results whilst allowing as much patient participation as possible.
- Above all, we want trials to translate into tangible change such as clinical developments that improve quality of life or the introduction of an effective treatment for MND.
Trial results and reliability was the theme of the first talk of the Technology and ALS/MND session presented by Richard Alan Smith, Director of the Centre for Neurological Study in San Diego. He outlined how computer-based testing of speech gives objective trial results, demonstrating outcomes missed by traditional clinical assessments.
Ruben van Eijk of the University Medical Centre Utrecht also presented on trial reliability as well as patient participation. Often the success of clinical trials is based upon a questionnaire (such as the ALS functional rating scale; ALSFRS) and this is a rather subjective way of measuring the effectiveness of different treatments.
His trial of a hip worn accelerometer has signs of being a reliable data-driven method for tracking disease progression. This method involves sensors which detect motion, the kind common in fitness trackers. His trial captured information on physical activity over a seven-day period and importantly, as people wore the tracker at home, it removed much of the ‘trial burden’ of attending hospitals or clinics to be assessed. This should mean more patients are willing to sign up for studies using this method and potentially it makes it easier to include those in more advanced stages of disease progression. All of this means richer and more reliable trial data whilst lowering the barrier to patient involvement in trials.
A similar theme was presented by Jeremy Shefner of the Barrow Neurological Institute who presented on the reliability of patients and their carers to undertake their own clinical tests in the home and report back using a smartphone app. Their focus was on testing information exchange with health professionals. The trial showed some interesting findings; firstly, that patients and their carers can reliably provide accurate data relating to speech, strength and respiratory function using equipment provided by the clinic and used in the home. Additionally, people with MND valued the fact that they had a direct involvement in their own health assessment saying they felt more aware of their symptoms and progression and therefore more in control.
Having demonstrated data reliability, the Institute’s conclusion was that much more frequent measurements are feasible which should make a trial quicker, provide more data and therefore robust results.
This point was also made by Andrew Geronimo of the Penn State College of Medicine who presented a study on remote testing of respiratory function with a video chat between patient and healthcare professional. With more frequent measures of lung function, non-invasive ventilation, which is effective in prolonging survival. can be introduced at the right time improving a patient’s quality of life and reducing the risk of emergency hospitalisation due to respiratory decline between infrequent clinic appointments.
Finally, we heard from Phillipa Rewaj of the University of Edinburgh who gave an update on the Speak:Unique voicebank pilot. This was a great way to wrap up the session as it is a tangible example of technology about to translate into a clinical service.
The Speak:Unique pilot, which was part-funded by the MND Association, is different to other voice banking technologies in that the recording time is much shorter than the norm (less than 1 hour of recording is required) and it has the ability to ‘repair’ voices by merging similar voices from volunteers. This is particularly beneficial for people with MND whose voice may have already started to deteriorate by the time they record their voice. Large numbers of Scottish healthy voice donors of different ages, gender and accents have been recorded. These are then combined with the patient voice hence the benefit of a reduced recording time and the ‘voice repair’ element if voice deterioration has already started.
The next steps for Speak:Unique are to expand the voice bank of healthy voices into accents from the rest of the UK, and to work towards the introduction of a clinical service.
So, there’s the whistle-stop tour of technology talks at our 29th annual Symposium. Perhaps we should go back to our touchstone – after all, it is easy to get excited about new technology. But this isn’t tech for the sake of it, all the results had realistic potential to make a tangible and beneficial difference from speeding up clinical trials to improving rates of patient participation, increasing the scope of inclusion for those in different stages of disease progression and perhaps best of all is an example of activity that is set to cross over into a clinical service.
Find out more about the topics discussed in Glasgow on our Periodic table of Symposium at www.mndassociation.org/symplive.
Yet again more brilliant updates. Thanks so much.