What digital smell technology means to people living with Parkinson’s disease

7 November 2022

Researchers from UCL are developing scent-delivery devices which could provide ‘smell training’ to people living with Parkinson’s disease.

Parkinson’s disease is a neurodegenerative condition that affects around 145,000 people in the UK. The condition can cause a range of symptoms, ranging from body tremors to mental health problems. One of the earliest and common non-motor symptoms is scent impairment – or loss of smell. This can have an immeasurable impact on a person’s quality of life, as their enjoyment of food and drinks is limited.

“Scent impairment in Parkinson’s disease can occur up to four years prior to the onset of motor signs and symptoms and has a significant impact on quality of life for Parkinson’s disease patients. By leveraging our knowledge of human-computer interaction and pharmaceutical science, we have begun to assess the use of scent delivery devices as part of regular scent training to map changes in smell function over the course of Parkinson’s disease. We thank our wonderful focus group whom were critical in defining their current problems and end-user needs and to Parkinson’s UK for their help in facilitating access to these participants.” - Neel Desai

In recent years, there has been an increasing interest in developing digital technology for early diagnosis and treatment for improved outcomes for people with Parkinson's disease. However, up until now, this has largely focused on reducing the impact of motor symptoms. The sense of smell and solutions to monitor olfactory changes have been widely neglected.

In a pilot study published in Digital Health, the researchers did a focus group with people living with Parkinson’s disease to explore their opinions and feelings towards novel digital smell technologies for improved health and wellbeing in everyday life. A new scent-delivery device and associated mobile app, developed by OWidgets, a university spin-out, was presented and discussed with regards to participants' condition, but more notably with regards to regular smell training. Smell training is a type of smell care (‘physiotherapy for the nose’) that could not only counteract the natural decline of the sense of smell with age, but also enable self-monitoring of smell perception over time. Changes could be detected earlier, and if persistent, discussed with healthcare professionals.

This type of research falls into the field of human-computer interaction (HCI); the study of how computer technology influences human lives and focuses on user-centred design to make interactions as easy as possible. The scent-delivery device being developed would connect with a user-friendly app that allows people to track their smell perception and account for individual odour preferences.

“The multisensory world we live in is increasingly transformed through technological advances like novel multisensory devices and interfaces. Such multisensory technologies not only stimulate our eyes (think of screens) and ears (and audio systems), but also consider how and what we touch, smell and taste.

Multisensory interfaces, such as olfactory interfaces, can enrich our experiences and are often undervalued in the digital health domain.” - Professor Marianna Obrist

Through conducting a focus group with people living with Parkinson’s disease, the researchers wanted to understand whether this type of technology would be received positively by end-users, and how they would imagine its use. The pilot study was carried out by Professor Mine Orlu (UCL School of Pharmacy), Professor Marianna Obrist (UCL Department of Computer Science/UCLIC and IHE’s Deputy Director, Digital), Dr Emanuela Maggioni (UCL Department of Computer Science/UCLIC), and Neel Desai (UCL School of Pharmacy).

A key takeaway from this initial engagement with people living with Parkinson’s disease was that all participants felt a lack of support in the existing healthcare system. All participants expressed concerns about their loss of smell to healthcare professionals and felt they had been dismissed.

“I did feel the doctor dismissed it when I said I couldn't scent anything 10 years ago and didn't really explore or explain any other possibilities”.

The participants expressed the sentiment that they ‘would try to do anything that may bring some of the memories back’ and were open to doing scent training as often as possible to achieve this.

“Experiencing sensory dysfunctions (e.g., smell loss), even if only temporary, can have negative effects on a person’s health and wellbeing. This article emphasises the importance of developing novel olfactory interfaces in the context of Parkinson’s disease, where smell dysfunction is an early biomarker for the development of the disease. Collaborating across disciplines and applying a user-centered approach is key for digital innovation and more important long-term adoption and impact”. - Dr Emanuela Maggioni

The research was supported by EPSRC and the European Research Council – SmellHealth. The technology (device and app) has been developed into a proof-of-concept for digital smell training and will be further evaluated within the new EPSRC/NIHR I-smell project, led by Prof Obrist.

Prof Mine Orlu, who was key to initiating this collaboration, highlights that an “Interdisciplinary approach is instrumental in achieving better outcomes in healthcare. Blending our understanding in human computer interaction and pharmaceuticals sciences has inspired us to start exploring the potential of scent delivery devices in improving quality of life of patients with altered sense of smell. We are very grateful to participants of this focus group study for enabling us to better understand the importance of the needs of end-users of healthcare engineering technologies.”

The authors would like to thank Parkinson's UK for access to their Research Support Network and assistance in focus group invitation distribution to that network.

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What digital smell technology means to people living with Parkinson’s disease

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