Esther V Hobson1,2, Wendy O Baird2, Rebecca Partridge3, Cindy L Cooper2,4, Susan Mawson2,5, Ann Quinn6, Pamela J Shaw1, Theresa Walsh1, Daniel Wolstenholme5, Christopher J Mcdermott1. 1. a Sheffield Institute for Translational Neuroscience , University of Sheffield (SITraN) , Sheffield , UK. 2. b School of Health and Related Research , University of Sheffield (ScHARR) , Sheffield , UK. 3. c Lab4Living , Sheffield Hallam University , Sheffield , UK. 4. d Clinical Trials Research Unit, School of Health and Related Research , University of Sheffield , Sheffield , UK. 5. e NIHR CLAHRC Yorkshire and Humber , Sheffield , UK , and. 6. f Sheffield Motor Neurone Disease Research Advisory Group , Sheffield , UK.
Abstract
OBJECTIVES: Attendance at a specialist multidisciplinary motor neurone disease (MND) clinic is associated with improved survival and may also improve quality of life and reduce hospital admissions. However, patients struggle to travel to clinic and may experience difficulties between clinic visits that may not be addressed in a timely manner. We wanted to explore how we could improve access to specialist MND care. METHODS: We adopted an iterative, user-centered co-design approach, collaborating with those with experience of providing and receiving MND care including patients, carers, clinicians, and technology developers. We explored the unmet needs of those living with MND, how they might be met through service redesign and through the use of digital technologies. We developed a new digital solution and performed initial testing with potential users including clinicians, patients, and carers. RESULTS: We used these findings to develop a telehealth system (TiM) using an Android app into which patients and carers answer a series of questions about their condition on a weekly basis. The questions aim to capture all the physical, emotional, and social difficulties associated with MND. This information is immediately uploaded to the internet for review by the MND team. The data undergoes analysis in order to alert clinicians to any changes in a patient or carer's condition. CONCLUSIONS: We describe the benefits of developing a novel digitally enabled service underpinned by participatory design. Future trials must evaluate the feasibility and acceptability of the TiM system within a clinical environment.
OBJECTIVES: Attendance at a specialist multidisciplinary motor neurone disease (MND) clinic is associated with improved survival and may also improve quality of life and reduce hospital admissions. However, patients struggle to travel to clinic and may experience difficulties between clinic visits that may not be addressed in a timely manner. We wanted to explore how we could improve access to specialist MND care. METHODS: We adopted an iterative, user-centered co-design approach, collaborating with those with experience of providing and receiving MND care including patients, carers, clinicians, and technology developers. We explored the unmet needs of those living with MND, how they might be met through service redesign and through the use of digital technologies. We developed a new digital solution and performed initial testing with potential users including clinicians, patients, and carers. RESULTS: We used these findings to develop a telehealth system (TiM) using an Android app into which patients and carers answer a series of questions about their condition on a weekly basis. The questions aim to capture all the physical, emotional, and social difficulties associated with MND. This information is immediately uploaded to the internet for review by the MND team. The data undergoes analysis in order to alert clinicians to any changes in a patient or carer's condition. CONCLUSIONS: We describe the benefits of developing a novel digitally enabled service underpinned by participatory design. Future trials must evaluate the feasibility and acceptability of the TiM system within a clinical environment.
Authors: Esther V Hobson; Wendy O Baird; Mike Bradburn; Cindy Cooper; Susan Mawson; Ann Quinn; Pamela J Shaw; Theresa Walsh; Christopher J McDermott Journal: BMJ Open Date: 2019-10-22 Impact factor: 2.692
Authors: Pieter Vandekerckhove; Marleen de Mul; Wichor M Bramer; Antoinette A de Bont Journal: J Med Internet Res Date: 2020-04-27 Impact factor: 5.428