Dr Veena Agarwal is a Senior Research Physiotherapist at University Hospital Southampton and part of the Research Leaders Programme (RLP).

She leads a team researching ways to improve care for people with neurodegenerative diseases.

Detecting invisible symptoms

Neurodegenerative diseases are conditions that gradually damage and destroy cells in the brain, spinal cord and nerves. They include Parkinson’s disease, motor neurone disease, Huntingdon’s disease and dementia.

These conditions often have physical symptoms, such as tremors, or problems with walking, balance and coordination. What poses more of a problem are the ‘invisible’ symptoms.

“Neurodegenerative diseases are challenging,” she explains, “because people often have mood, cognitive and behavioural symptoms. These are difficult to diagnose and monitor.

“I want to find digital markers for symptoms that are largely invisible. Yet if they deteriorate, they can have a much bigger impact on people’s quality of life.

“Increasing objectivity during assessment of such hidden symptoms can potentially improve and transform care.”

Could technology help?

Veena recently completed a PhD. She used wearable sensors to find digital markers of fatigue in people with Parkinson’s.

Participants completed fatigue diaries and wore wearable sensors. By comparing these, she showed that increased frequency of fatigue correlated with reduced movement intensity.

“Fatigue is extremely debilitating,” says Veena. “It’s an invisible symptom, and one of the top three symptoms that bother people with Parkinson’s. It’s a hidden symptom that was voted for by people with Parkinson’s as most in need of research.”

As a physiotherapist, she’s particularly interested in fatigue. This is because it affects people’s ability to use exercise to manage their condition.

“We encourage exercising as a treatment, but we know that fatigue is a significant deterrent,” she says. “If we understand fatigue better, we can optimise the exercises we prescribe.”

Veena now intends to use her RLP award to build on her PhD research. She will continue to investigate the potential benefits of wearable devices, sensors and apps for her patients.

This includes establishing a pathway to test new medical technologies. To do this, she will work closely with Professor Chris Kipps, Director of the Southampton Emerging Therapies and Technologies (SETT) Centre.

Supporting non-medical researchers

Veena has been working in neurodegenerative disease research for almost 14 years. She now feels it’s the right time to use her expertise and experience to support others like her.

“I’ve benefitted from being surrounded by excellent leaders who put their trust in you, mentor you and empower you,” she says. “I’m hoping I can build on my leadership skills, and foster research aspirations among other non-medics.”

She says that, in recent years, there has been a shift towards a wider range of professionals alongside doctors, taking the lead in research. She’s keen to encourage this, as they bring a different perspective and skillset.

“Research would benefit from harnessing these skills,” she says, “so I would like to encourage more non-medics, like nurses, midwives, allied health professionals to do research.”

Veena also intends to use her RLP to form new collaborations and partnerships, building on her current skillset to become a collaborative leader.

Improving future care

Veena’s overall aim is to benefit patients with neurodegenerative diseases through improved care at UHS.

During her RLP award, she intends to apply for future funding to extend her research beyond the three years. In particular, she plans to focus on trials and studies that could improve care for patients with Parkinson’s disease and Huntingdon’s disease.

She has a vision of a future where, instead of filling in a form during an appointment, patients could use technology to track their symptoms in their day-to-day lives.

Capturing and collating fatigue and movement data alongside other outcomes such as mood, sleep and medication data can help patients monitor their symptoms in the real world, identify potential triggers and improve self-management.

This could be done using a wearable device such as a smartwatch, or by completing questions in an app. It might even be possible to automatically generate data using sensors.

Using technology in this way would free up time during their appointment. It would also mean patients would no longer need to remember how their symptoms were months ago.

In addition, regular updates would provide multiple data points. This would make it possible to spot trends that could be useful for managing their condition.

Gathering group-level information could also help classify patients into sub-types, predict disease progression and treatment response. This is especially important for a variable, progressive and diverse condition such as Parkinson’s.

“In the future, patients could potentially have technology like a smartwatch or a digital platform,” says Veena.

“This device might be able to capture data on its own, or the patient could regularly update it.

“Their doctor would then have that data available when they next attend their appointment, to provide clinical insights and data trends which could help with shared decision making and deliver personalised care.”