Centre for Digital Transformation of Health - Research Publications

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    Fostering the use of Learning Health Systems through a fellowship program for interprofessional clinicians.
    Dushyanthen, S ; Perrier, M ; Chapman, W ; Layton, M ; Lyons, K (Wiley, 2022-10)
    Introduction: To address Australian workforce needs, we developed a Learning Healthcare System (LHS) Academy fellowship program for clinicians. In the Academy, fellows complete foundational coursework, an LHS project, and other professional development deliverables to foster their future as digital health champions within their organizations. In this paper, we describe the 11-month-long program, as well as our evaluation results from the first 2 months of the program. Methods: In the first week of the program, we sent all fellows an open-ended survey asking fellows to describe their digital health professional identities and what they expected to achieve from the fellowship program. At 2 months, we sent a follow-up open-ended survey that captured identical measures, their perceived barriers to participation in the program, perceived use of topics in the workplace and to their projects, and recommendations for program improvement. We analyzed the open text responses using qualitative content analysis, to identify categories of responses. Results: Overall, 2 months into the program, it was evident that participants were finding the teaching model engaging, useful, valuable, and applicable to their work and projects. Fellows perceived barriers to engagement in the program as balancing other commitments, lacking technical expertise, and having difficulty seeing themselves as leaders. Fellows expected that the program will allow them to implement new models of care, provide them with enough expertise to become leaders and champions in digital health, and become mentors for future generations. As far as changes in their professional identity, there was a notable increase in the number of fellows perceiving themselves as leaders. Conclusion: Fellowship programs are one promising means of developing the healthcare workforce in LHS capabilities. Future studies should describe and evaluate LHS programs, to provide insights and recommendations for other educators interested in implementing similar programs of work within their own institutions.
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    Toward clinical digital phenotyping: a timely opportunity to consider purpose, quality, and safety.
    Huckvale, K ; Venkatesh, S ; Christensen, H (Springer Science and Business Media LLC, 2019)
    The use of data generated passively by personal electronic devices, such as smartphones, to measure human function in health and disease has generated significant research interest. Particularly in psychiatry, objective, continuous quantitation using patients' own devices may result in clinically useful markers that can be used to refine diagnostic processes, tailor treatment choices, improve condition monitoring for actionable outcomes, such as early signs of relapse, and develop new intervention models. If a principal goal for digital phenotyping is clinical improvement, research needs to attend now to factors that will help or hinder future clinical adoption. We identify four opportunities for research directed toward this goal: exploring intermediate outcomes and underlying disease mechanisms; focusing on purposes that are likely to be used in clinical practice; anticipating quality and safety barriers to adoption; and exploring the potential for digital personalized medicine arising from the integration of digital phenotyping and digital interventions. Clinical relevance also means explicitly addressing consumer needs, preferences, and acceptability as the ultimate users of digital phenotyping interventions. There is a risk that, without such considerations, the potential benefits of digital phenotyping are delayed or not realized because approaches that are feasible for application in healthcare, and the evidence required to support clinical commissioning, are not developed. Practical steps to accelerate this research agenda include the further development of digital phenotyping technology platforms focusing on scalability and equity, establishing shared data repositories and common data standards, and fostering multidisciplinary collaborations between clinical stakeholders (including patients), computer scientists, and researchers.
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    Pharmacy Student Challenges and Strategies towards Initial COVID-19 Curriculum Changes
    Liu, L ; Caliph, S ; Simpson, C ; Khoo, RZ ; Neviles, G ; Muthumuni, S ; Lyons, KM (MDPI, 2021-10-01)
    Due to COVID-19, tertiary institutions were forced to deliver knowledge virtually, which proposed challenges for both institutions and students. In this study, we aimed to characterize pharmacy students' challenges and strategies during COVID-19 curriculum changes, therefore developing a comprehensive understanding of students' learning, wellbeing, and resilience in the ever-changing situation. Data were collected from student written reflections across four year levels at one school of pharmacy from March-May 2020. In addition, data were collected from written responses of second-year pharmacy students responding to prompted questions. The data were qualitatively analyzed inductively by five coders using NVivo 12. For each piece of data, two coders independently coded the data, calculated the inter-rater agreement, and resolved discrepancies. The most coded challenges were 'negative emotional response' and 'communication barrier during virtual learning'. The most coded strategies were 'using new technology' and 'time management'. This study allows researchers and education institutions to gain an overview of pharmacy students' experiences during COVID-19, therefore helping universities to provide students with necessary support and techniques on how to self-cope with COVID-19 as well as stressful events in the future.
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    Exploring health care graduates' conceptualisations of preparedness for practice: A longitudinal qualitative research study
    Ottrey, E ; Rees, CE ; Kemp, C ; Brock, TP ; Leech, M ; Lyons, K ; Monrouxe, L ; Morphet, J ; Palermo, C (WILEY, 2021-03-28)
    INTRODUCTION: Although preparedness for practice (P4P) has been variously described, little shared understanding exists about what P4P is across the health professions. How P4P is conceptualised matters, because this shapes how stakeholders think, talk about and act towards it. Further, multiple understandings can result in diverse expectations for graduate performance. This study therefore explores health care learners' solicited and unsolicited conceptualisations of P4P over their early graduate transition. METHODS: We conducted longitudinal qualitative research including individual and group entrance interviews (phase 1: n = 35), longitudinal audio-diaries (phase 2: n = 30), and individual and group exit interviews (phase 3: n = 22) with learners from four disciplines (dietetics, medicine, nursing and pharmacy). We employed framework analysis to interrogate data cross-sectionally and longitudinally. RESULTS: We found 13 conceptualisations of P4P (eg knowledge, confidence), broadly similar across the disciplines. We found some conceptualisations dominant in both solicited and unsolicited talk (eg skills), some dominant only in solicited talk (eg competence) and others dominant only in unsolicited talk (eg experience). Although most conceptualisations appeared relatively stable across time, some appeared to dominate at certain time points only (eg employability and skills in phases 1 and 2, and competence in phase 3). DISCUSSION: This novel study extends previous uniprofessional work by illustrating a broader array of conceptualisations, differences between professions, solicited versus unsolicited talk and longitudinal cohort patterns. We encourage health care educators to discuss these different P4P understandings in graduate transition interventions. Further research is needed to explore other stakeholders' conceptualisations, and over a duration beyond the early graduate transition.
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    Patient-Generated Health Photos and Videos Across Health and Well-being Contexts: Scoping Review
    Ploderer, B ; Aghdam, AR ; Burns, K (JMIR PUBLICATIONS, INC, 2022-04-12)
    BACKGROUND: Patient-generated health data are increasingly used to record health and well-being concerns and engage patients in clinical care. Patient-generated photographs and videos are accessible and meaningful to patients, making them especially relevant during the current COVID-19 pandemic. However, a systematic review of photos and videos used by patients across different areas of health and well-being is lacking. OBJECTIVE: This review aims to synthesize the existing literature on the health and well-being contexts in which patient-generated photos and videos are used, the value gained by patients and health professionals, and the challenges experienced. METHODS: Guided by a framework for scoping reviews, we searched eight health databases (CINAHL, Cochrane Library, Embase, PsycINFO, PubMed, MEDLINE, Scopus, and Web of Science) and one computing database (ACM), returning a total of 28,567 studies. After removing duplicates and screening based on the predefined inclusion criteria, we identified 110 relevant articles. Data were charted and articles were analyzed following an iterative thematic approach with the assistance of NVivo software (version 12; QSR International). RESULTS: Patient-generated photos and videos are used across a wide range of health care services (39/110, 35.5% articles), for example, to diagnose skin lesions, assess dietary intake, and reflect on personal experiences during therapy. In addition, patients use them to self-manage health and well-being concerns (33/110, 30%) and to share personal health experiences via social media (36/110, 32.7%). Photos and videos create significant value for health care (59/110, 53.6%), where images support diagnosis, explanation, and treatment (functional value). They also provide value directly to patients through enhanced self-determination (39/110, 35.4%), social (33/110, 30%), and emotional support (21/110, 19.1%). However, several challenges emerge when patients create, share, and examine photos and videos, such as limited accessibility (16/110, 14.5%), incomplete image sets (23/110, 20.9%), and misinformation through photos and videos shared on social media (17/110, 15.5%). CONCLUSIONS: This review shows that photos and videos engage patients in meaningful ways across different health care activities (eg, diagnosis, treatment, and self-care) for various health conditions. Although photos and videos require effort to capture and involve challenges when patients want to use them in health care, they also engage and empower patients, generating unique value. This review highlights areas for future research and strategies for addressing these challenges.
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    e-Mental Health Program Usage Patterns in Randomized Controlled Trials and in the General Public to Inform External Validity Considerations: Sample Groupings Using Cluster Analyses.
    Sanatkar, S ; Baldwin, P ; Huckvale, K ; Christensen, H ; Harvey, S (JMIR Publications Inc., 2021-03-11)
    BACKGROUND: Randomized controlled trials (RCTs) with vigorous study designs are vital for determining the efficacy of treatments. Despite the high internal validity attributed to RCTs, external validity concerns limit the generalizability of results to the general population. Bias can be introduced, for example, when study participants who self-select into a trial are more motivated to comply with study conditions than are other individuals. These external validity considerations extend to e-mental health (eMH) research, especially when eMH tools are designed for public access and provide minimal or no supervision. OBJECTIVE: Clustering techniques were employed to identify engagement profiles of RCT participants and community users of a self-guided eMH program. This exploratory approach inspected actual, not theorized, RCT participant and community user engagement patterns. Both samples had access to the eMH program over the same time period and received identical usage recommendations on the eMH program website. The aim of this study is to help gauge expectations of similarities and differences in usage behaviors of an eMH tool across evaluation and naturalistic contexts. METHODS: Australian adults signed up to myCompass, a self-guided online treatment program created to reduce mild to moderate symptoms of negative emotions. They did so either by being part of an RCT onboarding (160/231, 69.6% female) or by accessing the program freely on the internet (5563/8391, 66.30% female) between October 2011 and October 2012. During registration, RCT participants and community users provided basic demographic information. Usage metrics (number of logins, trackings, and learning activities) were recorded by the system. RESULTS: Samples at sign-up differed significantly in age (P=.003), with community users being on average 3 years older (mean 41.78, SD 13.64) than RCT participants (mean 38.79, SD 10.73). Furthermore, frequency of program use was higher for RCT participants on all usage metrics compared to community users through the first 49 days after registration (all P values <.001). Two-step cluster analyses revealed 3 user groups in the RCT sample (Nonstarters, 10-Timers, and 30+-Timers) and 2 user groups in the community samples (2-Timers and 20-Timers). Groups seemed comparable in patterns of use but differed in magnitude, with RCT participant usage groups showing more frequent engagement than community usage groups. Only the high-usage group among RCT participants approached myCompass usage recommendations. CONCLUSIONS: Findings suggested that external validity concerns of RCT designs may arise with regards to the predicted magnitude of eMH program use rather than overall usage styles. Following up RCT nonstarters may help provide unique insights into why individuals choose not to engage with an eMH program despite generally being willing to participate in an eMH evaluation study. Overestimating frequency of engagement with eMH tools may have theoretical implications and potentially impact economic considerations for plans to disseminate these tools to the general public.
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    Digital health at fifteen: more human (more needed).
    Huckvale, K ; Wang, CJ ; Majeed, A ; Car, J (Springer Science and Business Media LLC, 2019-03-18)
    There is growing appreciation that the success of digital health - whether digital tools, digital interventions or technology-based change strategies - is linked to the extent to which human factors are considered throughout design, development and implementation. A shift in focus to individuals as users and consumers of digital health highlights the capacity of the field to respond to secular developments, such as the adoption of person-centred care and consumer health technologies. We argue that this project is not only incomplete, but is fundamentally 'uncompletable' in the face of a highly dynamic landscape of both technological and human challenges. These challenges include the effects of consumerist, technology-supported care on care delivery, the rapid growth of digital users in low-income and middle-income countries and the impacts of machine learning. Digital health research will create most value by retaining a clear focus on the role of human factors in maximising health benefit, by helping health systems to anticipate and understand the person-centred effects of technology changes and by advocating strongly for the autonomy, rights and safety of consumers.
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    Smartphone apps for calculating insulin dose: a systematic assessment.
    Huckvale, K ; Adomaviciute, S ; Prieto, JT ; Leow, MK-S ; Car, J (Springer Science and Business Media LLC, 2015-05-06)
    BACKGROUND: Medical apps are widely available, increasingly used by patients and clinicians, and are being actively promoted for use in routine care. However, there is little systematic evidence exploring possible risks associated with apps intended for patient use. Because self-medication errors are a recognized source of avoidable harm, apps that affect medication use, such as dose calculators, deserve particular scrutiny. We explored the accuracy and clinical suitability of apps for calculating medication doses, focusing on insulin calculators for patients with diabetes as a representative use for a prevalent long-term condition. METHODS: We performed a systematic assessment of all English-language rapid/short-acting insulin dose calculators available for iOS and Android. RESULTS: Searches identified 46 calculators that performed simple mathematical operations using planned carbohydrate intake and measured blood glucose. While 59% (n = 27/46) of apps included a clinical disclaimer, only 30% (n = 14/46) documented the calculation formula. 91% (n = 42/46) lacked numeric input validation, 59% (n = 27/46) allowed calculation when one or more values were missing, 48% (n = 22/46) used ambiguous terminology, 9% (n = 4/46) did not use adequate numeric precision and 4% (n = 2/46) did not store parameters faithfully. 67% (n = 31/46) of apps carried a risk of inappropriate output dose recommendation that either violated basic clinical assumptions (48%, n = 22/46) or did not match a stated formula (14%, n = 3/21) or correctly update in response to changing user inputs (37%, n = 17/46). Only one app, for iOS, was issue-free according to our criteria. No significant differences were observed in issue prevalence by payment model or platform. CONCLUSIONS: The majority of insulin dose calculator apps provide no protection against, and may actively contribute to, incorrect or inappropriate dose recommendations that put current users at risk of both catastrophic overdose and more subtle harms resulting from suboptimal glucose control. Healthcare professionals should exercise substantial caution in recommending unregulated dose calculators to patients and address app safety as part of self-management education. The prevalence of errors attributable to incorrect interpretation of medical principles underlines the importance of clinical input during app design. Systemic issues affecting the safety and suitability of higher-risk apps may require coordinated surveillance and action at national and international levels involving regulators, health agencies and app stores.
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    The evolution of mobile apps for asthma: an updated systematic assessment of content and tools.
    Huckvale, K ; Morrison, C ; Ouyang, J ; Ghaghda, A ; Car, J (Springer Science and Business Media LLC, 2015-03-23)
    BACKGROUND: Interest in mobile apps that support long-term conditions such as asthma is matched by recognition of the importance of the quality and safety of apps intended for patient use. We assessed how changes over a 2-year period affected the clinical suitability of apps providing self-management information and tools for people with asthma by updating a review first performed in 2011. METHODS: Systematic content assessment of all apps for iOS and Android examining the comprehensiveness of asthma information, consistency with the evidence base for asthma self-management and adherence to best practice principles for trustworthy content, comparing the quality of apps available in 2011 to those released since. RESULTS: Between 2011 and 2013, numbers of asthma apps more than doubled from 93 to 191, despite withdrawal of 25% (n = 23/93) of existing apps. Newer apps were no more likely than those available in 2011 to include comprehensive information, such as the use of action plans, or offer guidance consistent with evidence; 13% (n = 19/147) of all apps, and 39% (n = 9/23) of those intended to manage acute asthma, recommended self-care procedures unsupported by evidence. Despite increases in the numbers of apps targeting specific skills, such as acute asthma management (n = 12 to 23) and inhaler technique (from n = 2 to 12), the proportion consistent with guidelines (17%, n = 4/23) and inhaler instructions (25%, n = 3/12), respectively, was low, and most apps provided only either basic information about asthma (50%, n = 75/147) or simple diary functions (24%, n = 36/147). CONCLUSIONS: In addition to persisting questions about clinical quality and safety, dynamic aspects of app turnover and feature evolution affect the suitability of asthma apps for use in routine care. The findings underline the need for coordinated quality assurance processes that can adapt to changing clinical and information governance-related risks, ensure compliance with the evidence base and reflect local variations in clinical practice. It is unclear if substantial clinical benefits can be realized from a landscape dominated by low quality generic information apps and tools that do not adhere to accepted medical practice.
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    Unaddressed privacy risks in accredited health and wellness apps: a cross-sectional systematic assessment.
    Huckvale, K ; Prieto, JT ; Tilney, M ; Benghozi, P-J ; Car, J (Springer Science and Business Media LLC, 2015-09-07)
    BACKGROUND: Poor information privacy practices have been identified in health apps. Medical app accreditation programs offer a mechanism for assuring the quality of apps; however, little is known about their ability to control information privacy risks. We aimed to assess the extent to which already-certified apps complied with data protection principles mandated by the largest national accreditation program. METHODS: Cross-sectional, systematic, 6-month assessment of 79 apps certified as clinically safe and trustworthy by the UK NHS Health Apps Library. Protocol-based testing was used to characterize personal information collection, local-device storage and information transmission. Observed information handling practices were compared against privacy policy commitments. RESULTS: The study revealed that 89% (n = 70/79) of apps transmitted information to online services. No app encrypted personal information stored locally. Furthermore, 66% (23/35) of apps sending identifying information over the Internet did not use encryption and 20% (7/35) did not have a privacy policy. Overall, 67% (53/79) of apps had some form of privacy policy. No app collected or transmitted information that a policy explicitly stated it would not; however, 78% (38/49) of information-transmitting apps with a policy did not describe the nature of personal information included in transmissions. Four apps sent both identifying and health information without encryption. Although the study was not designed to examine data handling after transmission to online services, security problems appeared to place users at risk of data theft in two cases. CONCLUSIONS: Systematic gaps in compliance with data protection principles in accredited health apps question whether certification programs relying substantially on developer disclosures can provide a trusted resource for patients and clinicians. Accreditation programs should, as a minimum, provide consistent and reliable warnings about possible threats and, ideally, require publishers to rectify vulnerabilities before apps are released.