Digital healthcare for the management of functional neurological disorders

25 - 26 November 2024 09:00 - 17:00 The Royal Society Free Watch online
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Scientists examines headset in modern Neurological Research Laboratory.

Discussion meeting organised by Dr Anirban Dutta and Dr Abhijit Das.

Functional neurological disorder (FND) is a disabling condition with significant healthcare costs. A survey revealed that 50% of UK health boards lack specific FND treatment agreements. Advances in FND understanding and digital healthcare technologies, such as non-invasive brain stimulation and virtual reality, offer new treatment avenues. This discussion meeting aims to unite experts and patient groups to develop digital healthcare solutions, enhancing FND management and accessibility.

Poster session

There will be posters displayed for the duration of the meeting. If you would like to present a poster, please submit your proposed title, abstract (up to 200 words), author list, and the name of the proposed presenter and institution to the Scientific Programmes team no later than Friday 25 October 2024. 

Programme

The programme, including the speaker biographies and abstracts, will be available soon.

Attending the meeting

This event is intended for researchers in relevant fields.

  • Free to attend
  • Both virtual and in-person attendance is available. Advance registration is essential. Please follow the link to register
  • Lunch is available on both days of the meeting for an optional £25 per day. There are plenty of places to eat nearby if you would prefer to purchase food offsite. Participants are welcome to bring their own lunch to the meeting

Enquiries: Scientific Programmes team.

Schedule

Chair

Professor Mark Edwards

Professor Mark Edwards, King's College London, UK

09:00-09:10 Welcome by the Royal Society and lead organisers
09:10-09:40 Keynote: FND: unmet needs in digital health

Jon will review the past present and future of FND as it relates to unmet needs and how digital forms of health might improve them. He will especially comment on diagnostic precision, assessment of comorbidity, outcome measurement, access to treatment, rehabilitation and novel treatment.

Professor John Stone, University of Edinburgh, UK

Professor John Stone, University of Edinburgh, UK

09:40-10:00 Fatigue in health and disease

Fatigue is a common experience, yet for many clinical populations fatigue is so prevalent and persistent that patients rate it as their worst or most debilitating symptom.  This is true for individuals with neurological injury or disease, and it is also true for individuals whose illness has not yet been fully explained by medical research such as individuals with Functional Neurological Disorders (FND).  However, despite its prevalence, fatigue remains poorly understood both because of imprecise definitions of fatigue and because of poor instruments to assess it. In this talk, Dr Wylie will discuss the work he has done to better understand cognitive fatigue in healthy individuals as well as in US Veterans with Gulf War Illness (which has many similarities to Chronic Fatigue Syndrome) and in individuals who have Post-Acute Sequelae of SARS CoV-2 infection (PASC, or ‘long COVID’).  This work has shown fatigue-related activation in a specific set of brain regions including the caudate nucleus of the basal ganglia, the thalamus, the ventro-medial prefrontal cortex, the insula and the dorso-lateral prefrontal cortex.  Furthermore, his work suggests that fatigue may be a signal the brain generates when the balance between effort and reward shifts such that the reward received for performing a given task no longer merits the effort required.

Glenn R Wylie, Rocco Ortensio Neuroimaging Center at Kessler Foundation, USA

Glenn R Wylie, Rocco Ortensio Neuroimaging Center at Kessler Foundation, USA

10:00-10:20 Unmet needs of patients with functional / dissociative seizures

As a group, patients with functional / dissociative seizures (FDS) are characterised by high levels of medical and psychiatric pathology often associated with disability and distress and markedly increased rates of premature death. This talk will explore the increasing gap between recognised needs and evidence-based interventions on the one hand and available diagnostic and treatment services on the other. It will highlight the urgent need for improvements and innovative solutions at a time (including a greater and more efficient use of technology) when resources for new service developments are limited.

Professor Markus Reuber, University of Sheffield, UK

Professor Markus Reuber, University of Sheffield, UK

10:20-10:40 Digital healthcare for the management of FND: unmet needs in physiotherapy

Digital healthcare and technology have the potential to enhance physiotherapy practice, improve the patient experience and outcomes from treatment. Digital healthcare may provide effective solutions to current challenges including developing and validating assessment tools and outcome measurement, enhancing interventions with technology such as virtual reality and biofeedback, and monitoring function to guide progression and predict setbacks. Digital healthcare may also prove to be useful where we lack effective treatments, for example treatment of functional sensory loss. One of the greatest challenges facing people with FND is an inability to access treatment and long waiting times for specialist services. Digital technology may provide solutions to improve the efficiency of treatment resources. However, we should embrace technology with caution. Digital healthcare may not suit all people and we risk excluding some vulnerable groups. There are risks associated with replacing tried and tested treatment will less effective novel approaches, especially if market pressures drive changes. To ensure continued progression of physiotherapy and rehabilitation, we must take an open minded yet considered approach to digital healthcare. Patients and service users should be involved in all stages of development, testing and implementation.

Dr Glenn Nielsen, St George's University of London, UK

Dr Glenn Nielsen, St George's University of London, UK

10:40-11:00 Break
11:00-11:20 Remote monitoring of functional neurological symptoms in everyday life: identifying antecedents and correlates

Remote monitoring technologies (RMT) might be optimal tools for tracking variations in, and identifying mechanisms underlying, functional neurological symptoms (FNS). Ecological momentary assessment (EMA), for example, can illuminate moment-to-moment changes in symptoms and related states, with high temporal resolution and ecological validity. Wearable devices can objectively capture physiological signals that might predict or correlate with alterations in FNS, with minimal patient burden. However, few studies have harnessed the potential of RMT in FND to date.
I present data from a pilot study examining the feasibility and acceptability of a novel RMT protocol, which aimed to identify antecedents and correlates of FNS in real-world settings. The study combined EMA with Fitbit Charge 5 wearables to monitor subjective FNS and other physical and mental states, as well as objective physiological variables of potential relevance (heartrate, electrodermal activity, sleep, physical activity). Multilevel models were generated to examine variables correlated with FNS severity in concurrent and time-lagged analyses.

EMA completion rates were high (≥80%). Across the week, FNS participants reported significantly elevated pain, arousal, fatigue, negative affect, dissociation, salient events, and sleep duration, relative to HC. The FNS sample also exhibited elevated objective sleep duration, sleep disturbance, and resting heartrate. FNS severity correlated significantly with affect, salient events, subjective arousal, pain, fatigue, and sleep disturbance, at the daily and/ or momentary level. Salient events and negative affect predicted momentary FNS severity in time-lagged analyses.
RMT are feasible and acceptable tools for investigating FNS in naturalistic settings. Larger-scale, longer-term RMT studies are needed in FND.

Dr Susannah Pick, King's College London, UK

Dr Susannah Pick, King's College London, UK

11:20-11:40 Social media and FND: powers and pitfalls

The growing presence of strong voices of individuals and groups of people with lived experience of FND on social media platforms represents a remarkable change in the landscape and social dynamics around these illnesses. Visibility and sharing of FND symptoms and stories can improve knowledge and support community-building but can also expose stigmatising beliefs and attitudes. As researchers and clinicians, the exponential growth and power of social media platforms may provide opportunities for new sorts of research and collaborations; but we must step carefully.

Dr Laura McWhirter, University of Edinburgh, UK

Dr Laura McWhirter, University of Edinburgh, UK

11:40-12:30 Discussion: Identify unmet needs in digital healthcare for individuals with functional neurological disorder

Chair

Professor Markus Reuber

Professor Markus Reuber, University of Sheffield, UK

Professor Selma Aybek

Professor Selma Aybek, Fribourg University, Switzerland

13:30-13:50 Psychotherapy via digital tools

Professor Alan Carson, University of Edinburgh

13:50-14:10 Suggestion/ hypnosis for FND in the digital age

Dr Quinton Deeley, King's College London

14:10-14:30 Unveiling the differences in the language used by professionals helping people with FND: a comparative topic and sentiment analysis

The rapid digitisation of healthcare, propelled by advancements in Artificial Intelligence (AI) and Machine Learning (ML), has revolutionised the management and analysis of Electronic Health Records (EHRs). Among the diverse techniques emerging from this technological frontier, Natural Language Processing (NLP) stands out for its ability to unveil hidden patterns, insights, and the nuanced dynamics of medical professional-patient interactions. Specifically, topic modelling and sentiment analysis provide powerful tools for deciphering the latent themes and emotional undertones in clinical documentation, offering unprecedented opportunities to understand and improve patient care. This is even more important in FND care, as FND patients often feel unheard and stigmatised by clinical professionals. We conducted an NLP-based and sentiment analysis of written records from neurologists, psychologists and other medical professionals supporting FNF patients.  The results indicated remarkable differences in the type of vocabulary used and in the ‘emotional tones’ conveyed by different types of professionals when writing to and about their FND patients. Our findings have direct clinical implications and offer insights into how to develop better care pathways for people with FND and how to improve clinical training for professionals working with FND patients. 

Dr Daniela Di Basilio, Lancaster University, UK

Dr Daniela Di Basilio, Lancaster University, UK

14:30-14:50 TBC

Professor Manoj Sivan

14:50-15:10 Imaging biomarkers in FND

This talk will start by summarising recent advances in the understanding of the pathophysiology of functional neurological disorders with a focus on biomarkers. Mechanisms will be discussed in light of neuroimaging findings, summarising older finding and new advanced imaging methods including classifiers and real-time functional MRI. A link on imaging findings to clinical variables and biological markers will also be addressed.

Professor Selma Aybek, Fribourg University, Switzerland

Professor Selma Aybek, Fribourg University, Switzerland

15:10-15:30 Break
15:30-15:50 Virtual reality for managing FND

Dr Tim Nicholson, King's College London

15:50-16:10 A minimalist intervention for a maximalist digital age: exploring the therapeutic potential of floatation-REST for FND

In an era where individuals, including those with functional neurological disorders (FND), experience near-constant exposure to digital signals, a minimalist approach through floatation-REST (Reduced Environmental Stimulation Therapy) offers a contrasting and potentially transformative avenue for FND treatment. Floatation-REST involves immersing individuals in a sensory-reduced environment, typically a specialised pool filled with a saturated Epsom salt solution, allowing them to float effortlessly. This non-pharmacologic approach effectively removes technological and external environmental inputs to the nervous system. Initial research from randomised controlled trials in psychiatric populations indicates that floatation-REST is safe and feasible for clinical integration. It significantly reduces anxiety levels, acutely enhances relaxation, serenity, and interoceptive awareness, attenuates autonomic arousal and pain, and improves mental clarity and well-being. Additionally, this intervention has been shown to reduce functional connectivity between default mode and somatomotor network hubs in healthy individuals and exert sustained improvements in visual body image in those with eating disorders, suggesting that changes in bodily consciousness play an important role in the induced effects. Given the substantial comorbidity of stress, anxiety, and depression with FND and emerging evidence of aberrant interoception in the disorder, floatation-REST would appear to hold promise for clinical benefit in FND. This talk will examine the potential therapeutic benefits of floatation-REST, emphasising its efficacy in reducing anxiety, enhancing relaxation and serenity, alleviating pain, and modulating aversive body representations in individuals with FND. The overall aim is to stimulate discussion on how this non-digital intervention can complement existing and emerging digital tools to achieve symptomatic improvement in individuals with FND.

Dr Sahib Khalsa, UCLA Geffen School of Medicine, USA

Dr Sahib Khalsa, UCLA Geffen School of Medicine, USA

16:10-16:50 Discussion: How to improve current and emerging digital healthcare applications in FND?
16:50-18:15 Poster session

Chair

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Professor John Terry, University of Birmingham, UK

Professor Christopher James

Professor Christopher James

09:00-09:20 Delivering patient care in FND

This talk will address some of the structural and illness-specific challenges of delivering effective healthcare for people with FND, and what the opportunities might be for digital technologies to improve healthcare process and outcomes.

Professor Mark Edwards, King's College London, UK

Professor Mark Edwards, King's College London, UK

09:20-09:40 Digital tools in solving rural mental health disparities

Professor Rohit Shankar, University of Plymouth

09:40-10:00 C-low threshold mechanoreceptors: a novel target for health-tech in an increasingly touch deprived world

Chronic stress is the cause of many adverse changes in the brain: increased release of glucocorticoids, widespread inflammation, changes in neuronal morphology such as myelination in prefrontal cortex (PFC) and hippocampus (HC), reduced levels of neurotrophic factors such as Fibroblast Growth Factor2, alterations in brain connectivity especially within PFC-amygdalo-HPC networks, and circulation disruption. Chronic stress has also been found to be an antecedent of cognitive impairment and dementia. 

Affiliative tactile interactions buffer social mammals against neurobiological and behavioural effects of stress, and with the recent COVID pandemic, where for the first time in human evolution affective touch interactions were significantly restricted, we saw the adverse consequences on people’s stress levels and subsequent mental and physical health. But what's the mechanism? Here a case is made for the role of a relatively recently discovered (in humans) population of cutaneous low threshold thermo-mechanosensitive c-fibres called c-low threshold mechanoreceptors (C-LTMR) as a neurobiological substrate responsible for regulating resilience to stress. These 1st order neurones are velocity tuned, preferentially encoding gentle, dynamic touch delivered at ~3 cm/sec, projecting centrally to dorsal posterior insular cortex and ACC. C-LTMRs are now being understood to provide a singular vital protective function, from the nurturing touch of the mother. Deprivation of nurturing touch causes life-long adverse neurodevelopmental consequences. There is now evidence of C-LTMRs putative role in dementia. By analogy with the vital role vitamins play in physical health, affective touch and its neuronal substrate the C-LTMRs, can be described as ‘Vitamin-T’ for the social brain.

Professor Francis McGlone, Manchester Metropolitan University, UK

Professor Francis McGlone, Manchester Metropolitan University, UK

10:00-10:20 Affordable digital tools for FND: an international perspective

Functional Neurological Disorder (FND) is often associated with significant morbidity. The estimated incidence is 4–10/100,000 and is more common in adults. In South Asian countries, the prevalence is as high as 31% and twice as common in women than in men. The economic burden of clinic-based care is high due to the involvement of multiple specialties and extensive investigations. Studies showed an excess annual cost associated with FND (range $4,964-$86,722 2021 US dollars), which consisted of both direct and large indirect costs. Studies showed promise that interventions, including the provision of a definitive diagnosis, could reduce this cost. The assessment and therapy may be stretched over longer periods and contribute to care costs. Hence, innovations for a definitive diagnosis and effective monitoring and management can reduce the care burden.

The digital tools appear promising in the detection of triggering factors, promoting positive behavioural changes, self-monitoring, and therapy and networking for online community support and teleconsultation. The limiting factors to access appropriate care appear to be affordability, access to devices, literacy, and privacy in lower resource settings. In lower and middle countries, patriarchal and collectivistic societies having access is a challenge. According to a telecommunications report, there are up to 50% of Indians, with internet access. The smartphone penetration in India, however, reached 71% in the financial year 2023. Thus, with rising mobile phone penetration, and reduced data charges, digital tools especially mobile applications hold a promise for effective management of FND symptoms in lower resource settings.

10:20-10:40 Improve patient communication: feedback from a multi-disciplinary service

The Rosa Burden Centre provides a 3 week multi-disciplinary programme for people with FND symptoms. We have reviewed symptoms-based outcome measures on admission and discharge, together with 3 and 6 month follow up. I will also present information about our novel FND Liaison Practitioner role.

Dr Elizabeth Mallam, Southmead Hospital, UK

Dr Elizabeth Mallam, Southmead Hospital, UK

10:40-11:00 Break
11:00-11:20 Applications of modular robotics in neurorehabilitation research

This talk will present an overview of the applications of robotics and immersive technologies in neuro-rehabilitation research. Robotics technology and virtual reality systems found multiple useful applications in neuro-rehabilitation research and clinical practice. Rehabilitation robotics and assistive technology enable clinicians to perform complex, monotonic and time-consuming physiotherapy tasks more easily supporting faster and more efficient patient recovery. The talk will specifically address the issue of rehabilitation technology accessibility, and design aspects that can improve its affordability and breadth of applications. To address the technology affordability, examples of modular robotic systems designed for the upper limb will be presented and the potential of at-home based tele-rehabilitation will be discussed.

Ildar Farkhatdinov, King's College London, UK

Ildar Farkhatdinov, King's College London, UK

11:20-11:40 Exoskeleton-mediated gait training in pediatric populations: moving from the clinic to the community

Children with neuromuscular disorders suffer from a combination of motor control deficits and lower limb weakness resulting in a range of gait impairments. Robotic exoskeletons offer a potential solution to improve mobility in these individuals; their modularity in design and implementation enable the ability to tailor devices to meet individual user needs. Initial cohort studies of these technologies, performed mostly in clinical settings, demonstrate their effectiveness as assistive devices to improve gait biomechanics. Their promise as therapeutic interventions to improve long term function is less clear. This talk will highlight key advances made by the Neurorobotics Research Group at the US National Institutes of Health to explore this application, including novel approaches to the use of exoskeletons to resist or challenge limb movement during walking as a form of gait training. The design of and initial results from a randomized crossover study to determine whether 12 weeks of this overground gait training delivered in the community setting is effective will also be presented. Finally, this presentation will consider the context of other relevant advances within the field and discuss future directions for improving functional recovery in children with neurologic disorders.

Dr Thomas C Bulea, National Institutes of Health Clinical Center, USA

Dr Thomas C Bulea, National Institutes of Health Clinical Center, USA

11:40-12:30 Discussion: Technologies to shift the emphasis of FND management to home and community settings

Chair

Professor Jon Stone

Professor John Stone, University of Edinburgh, UK

13:30-13:50 Dynamic network models for diagnosis and treatment of epilepsy and other seizure disorders

In this talk a mathematical framework for understanding transitions between apparently healthy brain states and seizure-like states is introduced. A dynamic network model consists of a mathematical model that describes how the dynamics within a node varies over time with nodes coupled together through directed or undirected graphs. The developed framework is used to describe mechanistic properties of the network that make seizures more (or less) likely. Algorithms are introduced from which properties of the mathematical model can be informed directly from clinical imaging data such as electroencephalography (EEG). In this context, nodes now represent brain regions (as reflected from channels of the EEG) and edges determined by functional connectivity. Those mechanistic properties that best explain transitions to seizure states are considered as candidate biomarkers from which a statistical classifier is developed and applied in a large cohort of clinically non-contributory EEG recordings from both people with epilepsy and other conditions. The potential for the approach to provide meaningful clinical decision support is discussed.

Professor John Terry, University of Birmingham, UK

Professor John Terry, University of Birmingham, UK

13:50-14:10 Taking BCI into the home: signal processing challenges

Making ‘real-world’ BCI, ie a wearable BCI system that can be used in the home, poses specific challenges in managing and extracting useable information from systems that by design are smaller and less intrusive and, usually, have fewer recording channels which are most probably scalp (EEG) based. This talk addresses the issues that arise when trying to extract meaningful information from single or few channel, noisy, recordings. The talk pays particular attention to data-driven methods to information extraction, specifically in blind source separation where information is extracted from recordings using particular criteria such as, for example, statistical independence, which is the case in Independent Component Analysis. This process is made more difficult due to the low-channel count and the limited spatial/ contextual information; the talk will address ways in which this can be addressed. Overall, it is possible to see that despite low channel counts and challenging recording environments it is possible to extract meaningful and useful information from noisy data using well-structured and powerful assumptions about the data and its acquisition.

Professor Christopher James

Professor Christopher James

14:10-14:30 Non-invasive wearable bioelectronic interfaces

Wearable devices, allowing the monitoring of a wide range of physiological parameters, are having a transformative impact on health and wellbeing applications. We are now able to collect longitudinal data in a way never previously possible. At the same time, current wearables have a wide range of open opportunities for making them even better, from improving accuracy, to improving comfort, to embedding real-time machine learning bases analyses. This talk will provide an overview of these different topics. It will start with a high-level overview and roadmap for future wearable hardware, with particular emphasis on advances being enabled by emerging flexible electronics. I will then present examples of our work on data science and machine learning applied to wearable data.

Professor Alex Casson, University of Manchester, UK

Professor Alex Casson, University of Manchester, UK

14:30-14:50 Learning embeddings of spatio-temporal neural activity

Emerging data-driven modelling methods are affording new opportunities for building bio-inspired models for neural activity. Of particular interest is understanding how neural pathways from input stimuli to behavioural responses function. Importantly, data-driven models are capable of framing neurosensory integration into a modern framework, allowing for an improved understanding of the role of network structure and function. Specifically, the encoding space of neural activity can be extracted from modern mathematical methods with a goal of improved scientific understanding.

J Nathan Kutz, University of Washington, USA

J Nathan Kutz, University of Washington, USA

14:50-15:10 Applying OPM/ MEG to study attention mechanisms in adults and children

When we read, we move our eyes every 250 milliseconds. This means there is very little time between eye movements to process the words we are fixate at, decide where to look next, and move our eyes. To better understand the brain mechanisms of the fast attentional mechanisms supporting natural reading, we combined MEG and eye-tracking recordings. Participants were asked to read sentences while their brain activity and eye movements were recorded. We found that parafoveal words being saccade goals are processed surprisingly fast at the semantic level. This previewing predicted individual reading speed. To investigate these mechanisms in children learning to read, we are adapting our OPM/MEG system such that it can be used for paediatric recordings. The aim is to gain insight into the reading mechanisms that need to be developed in children to support proficient reading.

Professor Ole Jensen, University of Birmingham, UK

Professor Ole Jensen, University of Birmingham, UK

15:10-15:30 Break
15:30-15:50 Transcranial electrical stimulation targeting limbic cortex increases the duration of human deep sleep

It is now widely recognised that physical and psychological well-being are dependent on good sleep. Sleep is marked by clearly identifiable physiological states that define stages of sleep, with different stages involved in different physiological and cognitive processes. An important sleep stage that may be involved in brain clearance of toxins and memory formation is slow-wave sleep (also known as deep sleep). We present evidence that slow-wave sleep can be enhanced through use of a portable, user-friendly device deployed in the home. This closed-loop transcranial electrical stimulation technology detects when a person is about to enter slow-wave sleep and injects low-level current to sustain and enhance this sleep stage. The ability to selectively enhance slow-wave sleep has significant implications for health.

Phan Luu, Brain Electrophysiology Laboratory, USA

Phan Luu, Brain Electrophysiology Laboratory, USA

15:50-16:40 Discussion: digital healthcare in FND: risks, challenges, and solutions

Discussion panel formed of Professor Siddhartha Bandyopdhyay, University of Birmingham, Professor Charles Phelps, University of Rochester, USA, and Professor Darius Lakdawalla, USC Price School of Public Policy, USA.

16:40-17:00 Panel discussion on future directions