Article
Digital health solutions for informational support for rare neuromuscular diseases: Results from an exploratory qualitative study in Australia
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Authors
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Franziska Hörner
- Chair of Healthcare Management and Health Services Research, University of Bayreuth, Bayreuth, Germany
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Katja C. Senn
- Chair of Healthcare Management and Health Services Research, University of Bayreuth, Bayreuth, Germany
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Deniz Senyel
- Chair of Healthcare Management and Health Services Research, University of Bayreuth, Bayreuth, Germany; Chair of Digital Health and Innovation, La Trobe University, Bundoora VIC, Australia
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Michael Burkard
- Chair of Healthcare Management and Health Services Research, University of Bayreuth, Bayreuth, Germany
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James Boyd
- Chair of Digital Health and Innovation, La Trobe University, Bundoora VIC, Australia
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Klaus Nagels
- Chair of Healthcare Management and Health Services Research, University of Bayreuth, Bayreuth, Germany
| Published: | October 2, 2023 |
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Outline
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Background: Most neuromuscular diseases (NMDs) are classified as rare. This rareness is associated with information gaps regarding correct diagnosis and appropriate disease management. Digital solutions can close the gap by providing platforms allowing collection, analysis, interpretation, and dissemination of relevant information to caregiving ecosystems. Despite the increasing awareness of digital health in National Action Plans for Rare Diseases and accelerated technology implementations during the COVID-19 pandemic, digital health solutions have not been sufficiently explored in the context of NMDs.
Objective: This study aimed to explore the digital health ecosystem for rare NMDs in Australia and to identify barriers and facilitators to the implementation of digital health solutions.
Methods: Twelve semi-structured interviews were conducted in this exploratory qualitative study of a German-Australian research collaboration. Snowball sampling was applied to recruit Australian experts in the field of rare NMDs. Interviews were conducted online and face-to-face in Melbourne in November/December 2022. All interviews were audio-recorded and transcribed verbatim. Data were analysed deductively and inductively using Kuckartz’s content analysis technique. The WHO Classification of Digital Health Interventions and the Consolidated Framework for Implementation Research (CFIR) guided the data collection and analysis.
Results: The results were classified into three main categories. Firstly, prioritised topics for future digital health solutions, this included results of our pre-study and newly suggested topics. Secondly, existing and desired digital health solutions, defined as the digital health ecosystem. Analysis revealed nine types of solutions: health records, registries, teleconsultations, on-demand information services, communication tools, tracking tools, exercise tools, decision support tools, and organisational tools. Thirdly, factors influencing the implementation of solutions according to the CFIR. All CFIR domains were covered. The most relevant domains were characteristics of innovation and characteristics of individuals. Engagement strategies were also highlighted.
Discussion: This study identified the unmet potential of digital health solutions for informational support for rare NMDs, considering the needs of patients, carers, and healthcare professionals. Existing and future digital health solutions can be improved by implementing a more user-centred approach. The implementation process plays an important role in the uptake and long-term use of digital health solutions in Australia. The variety of factors identified as influencing implementation underpin the need for appropriate implementation strategies.
Implication: This is the first study to provide an overview of existing and needed digital health solutions for NMDs and identified barriers and facilitators for their implementation from the view of patient organisations and clinicians in the Australian health system. A comparable study has not yet been conducted in Germany. The Australian results allow to better shape implementation of digital health for NMD care management in the German health setting.
