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Neuro rehab technology

Tackling the self-report shortfall



How new technology could revolutionise the way patients self-report their symptoms – improving outcomes and research capabilities in neuro-rehab and other fields.

‘Patient-centred’ has become a well-worn phrase in neuro-rehab in recent years. In fact, so often is it mentioned by care and therapy providers, that it is starting to mean different things to different people, running the risk of becoming meaningless.

Of course, in healthcare the patient should, indeed, be at the heart of everything. If self-report mechanisms are flawed, however, can we really say that this is the case?

A new platform is addressing this by changing how patients are able to self-report their symptoms, adopting a real-time approach and presenting new possibilities for rehab teams.

Self-reporting in neuro-rehab can be vitally important. Without it, multidisciplinary teams (MDTs) may struggle to accurately assess a patient’s pain levels or discover key aspects of their wellbeing. It can be particularly challenging in brain conditions, however; with behavioural changes, fatigue and memory problems among several factors that might affect an individual’s ability to relay how they are feeling.

With stroke diagnosis, for instance, studies have found that while self-reporting ‘may be a useful screening tool to identify potential stroke disease in prospective studies, it is not accurate enough on its own to confirm cases.’ (Woodfield et al, 2015).

Furthermore, a 2010 study into self-reported cognitive symptoms following mild traumatic brain injury in US veterans found that ‘self-reported cognitive functioning is significantly related to psychiatric symptoms and clinicians should appreciate this limitation’ (Spencer et al, 2010).

A new platform has been borne out of recognition of such challenges, harnessing digital tech to allow real- time and accurate self-reporting.

It could help to improve the way the progress of neuro-rehab patients is tracked and the ease at which vital neurological research can be carried out.

Tiyga, an acronym for Time Is Your Greatest Asset, is a cloud-based system that enables clinicians to capture patient diary data and monitor progress of symptoms over days, weeks and months – via an easy-to-use application.

So far it has successfully been used by the Arthritis Support Group (MSK) and the Pelvic Pain Support Network, amongst others.

The platform helps to bring patient knowledge to healthcare professionals in a timely way. The aim is for healthcare professionals to receive information in near-real time, allowing them to use their knowledge and experience to facilitate problem-solving.

The Tiyga dashboard allows each healthcare professional to create app accounts which are tailored to their patient. These can be configured remotely by clinicians so that their patients are able to report symptoms experienced at any time of day.

They also help to encourage conversations in a language that is relatable and understandable to a greater number of patients.

With all of the data managed in the UK, clinicians can customise the platform for each individual patient, who can then, in turn, report using a bespoke rating.

The option to add free text, explaining in their own words anything else that they consider to be relevant, allows the patient to feel in control and not controlled by a disease.

Neuro patients may have less energy or cognitive ability to navigate complex apps or forms, so Tiyga is specifically designed for ease of use, including for infrequent users of technology.

The patient needs only 20-30 seconds to report how they feel without having the burden of remembering all the details for the next consultation.

The reports are easily shared with members of an MDT, removing the need for the patient to repeat themselves.

As a result, clinicians are able to view a unique, visual diary pattern that helps them to establish timelines and summarise statistics over different time periods.

MDTs spend a high proportion of consultation time on discussing the history of a patient, and the process can be further extended depending on how well the patient recalls their experience or time since the last consultation.

Clinicians can only do their best with information given to them and cannot manage something they are unable to measure – or unaware of.

Real-time input can enhance health outcomes, especially in a neuro-rehab scenario where it isn’t simply a one-off situation involving taking a pill and reporting back at a later date with the results.

This remote connection to professionals with a full understanding of the best treatment options, gives more confidence, helps to reduce anxieties and enables the patient with pre-existing or newly emerging conditions, to respond to the challenges they face.

Experiences such as a migraine flare-up, for example, where there is a sudden and extremely distressing intensity at a certain period of time, may be easier to relay back to physicians accurately at a later date.

Similarly other symptoms that are subjective, such as fatigue or brain fog, may be more difficult to measure in a traditional way.

In these situations, where symptoms vary over time, self-reporting through the app helps to mitigate this obstacle and reduce the potential for recall error that could affect a number of neuro patients.

Katrina Delargy, managing director of Tiyga Health, tells NR Times: “There are a number of symptoms that normally rely on the patient telling the doctor how they have been since their previous appointment.

One of the problems in the neuro area is, if the disease affects somebody’s memory, then it is especially hard for them to remember clearly to give the doctor a clear picture of exactly what has happened.

“Remembering the exact detail is why potential recall error is something that would affect a number of neuro patients.

“This could be used by MDTs, or as a tool as part of clinical research in gathering the data needed from the patient cohort.”

It could also help to capture data from patients during periods when healthcare resources are most stretched such as during the winter, or under the ongoing challenges of COVID-19.

In the case of long Covid, where lingering symptoms such as brain fog and the deterioration of cognitive functioning can last over six months, CT scans may initially look normal or show only slight abnormalities.

Allowing patients’ real-time feedback on these symptoms that are not yet calibrated on medical devices, may help experts identify and explain patterns.

At a time where remote appointments are the norm, self-reporting is another digital tool helping rehab teams to better engage with their patients.

In assisting those who require help re-learning to walk or swallow, for example, real-time, remote feedback could prove invaluable.

While Tiyga may not be the definitive answer to every aspect of the self-report challenge neuro-rehab, it certainly shows lots of promise in delivering truly patient-centred care. NR Times will be monitoring its development in the coming months as healthcare’s digital revolution accelerates.

To find out more email katrina@tiygahealth.eu

The Greater Manchester Neuro Alliance (GMNA)

The GMNA is one of several organisations piloting the Tiyga platform. Here its chair, Deb Troops, explains why she believes it is a much-needed addition to the neuro-rehab professionals’ toolkit.

For us at the GMNA, one of the most exciting things about the platform is that, not only is it extremely clear in its approach to the patient or the client, it also offers the opportunity for the people supporting them to learn how to use it and understand what it’s actually for.

In terms of professional learning tools, it provides data that can be shared – and be part of their personal development.

In the past we have had lots of pieces of paper but nothing with a joined up approach. An app which enables us to share that data with clinicians, social workers and case managers, really does enable a person-centred approach.

When people go to a clinic appointment, instead of having to remember or turn up with diaries and loads of bits of paper, the clinician sitting opposite them can actually have a record that that person has shared with them for the last six or twelve months.

That’s really important because so many times a vulnerable person or someone with cognitive problems can turn up to a clinic appointment and they might sit and become agitated or frustrated if they were to forget things.

The app could change everything when it comes to patient care. Before they even sit down with a clinician or even if they are not well enough to attend, the clinician would know how a person was feeling and could change or recommend new medication.

If we could do that for people living with long-term health conditions like ME or brain injuries like Parkinson’s, imagine what a wealth of information we can share right across the board.

It puts the patient in control. I am really excited about the possibilities that this could present.

It absolutely puts the patient at the centre, so often the client is never asked for their input to MDT’s, clinical meetings and assessments. Why not? Because they are the people who experience what is happening on a daily basis.