Self-Management Systems for Patients and Clinicians in Parkinson's Disease Care: A Scoping Review.

Background: Digital self-management tools including mobile apps and wearables can enhance personalized care in Parkinson's disease, and incorporating patient and clinician feedback into their evaluation can empower users and nurture patient-clinician relationships, necessitating a review to assess the state of the art and refine their use. Objective: This review aimed to summarize the state of the art of self-management systems used in Parkinson's disease management, detailing the application of self-management techniques and the integration of clinicians. It also aimed to provide a concise synthesis on the acceptance and usability of these systems from the clinicians' standpoint, reflecting both patient engagement and clinician experience. Methods: The review was organized following the PRISMA extension for Scoping Reviews and PICOS frameworks. Studies were retrieved from PubMed, CINAHL, Scopus, ACM Digital Library, and IEEE Xplore. Data was collected using a predefined form and then analyzed descriptively. Results: Of the 15,231 studies retrieved, 33 were included. Five technology types were identified, with systems combining technologies being the most evaluated. Common self-management strategies included educational material and symptom journals. Only 11 studies gathered data from clinicians or reported evidence of clinician integration; out of those, six studies point out the importance of raw data availability, data visualization, and integrated data summaries. Conclusions: While self-management systems for Parkinson's disease are well-received by patients, the studies underscore the urgency for more research into their usability for clinicians and integration into daily medical workflows to enhance overall care quality.

Digital tools, such as smartphone applications and wearable devices, could help people with Parkinson's disease manage their symptoms by using data and technology to provide support that is personalized to them and by supporting communication between patients and healthcare providers. This review studies current literature on these digital self-management systems for people with Parkinson's disease. Of the 33 studies included in our review, we found that many of these systems combine different types of digital technologies (for example, a mobile app and a wearable sensor). The most common strategies to help support patients with self-management included in these digital tools were providing educational health content and symptom diaries. Only a few studies have considered healthcare providers' perspectives on these systems. Those that did highlighted a need for better access to patient data, improved data presentation, and summaries of key health insights. While patients find digital self-management tools favorable, further research is needed to ensure they meet healthcare providers' professional needs and can fit easily into daily clinical routines, ultimately improving care for individuals with Parkinson's disease.

Modifications to the National Early Warning Score: a scoping review protocol.

INTRODUCTION: The National Early Warning Score (NEWS/2) system was developed to enable the detection and early intervention of patients at risk of clinical deterioration. It has demonstrated good accuracy in identifying imminent critical outcomes but has limitations in its applicability to various patient types and its ability to predict upcoming deterioration beyond 24 hours. Various studies have attempted to improve its predictive accuracy and clinical utility by modifying or adding variables to the standard NEWS/2 system. The purpose of this scoping review is to identify modifications to the NEWS and NEWS2 systems (eg, the inclusion of additional patient demographic, physiological or other characteristics) and how those modifications influence predictive accuracy to provide an evidence base for subsequent improvement of the system. METHODS AND ANALYSIS: The review will be structured using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews and the Population, Intervention, Comparator, Outcome, and Study frameworks. Six databases (PubMed, ScienceDirect, Embase, CINAHL, Web of Science and Cochrane Library) will be searched in April 2024 for articles published in English. Article screening and data extraction will be conducted by two independent reviewers, with any conflicts resolved by discussion. The analysis will be descriptive to provide a summary of modifications identified and their influence on the predictive accuracy of NEWS/NEWS 2. ETHICS AND DISSEMINATION: Ethical approval is not required as data will be obtained from already published sources. Findings from this study will be disseminated via publication in a peer-reviewed journal.

Evaluation of health recommender systems: a scoping review protocol.

BACKGROUND: People increasingly rely on online health information for their health-related decision-making. Given the overwhelming amount of information available, the risk of misinformation is high. Health recommender systems, which recommend personalised health-related information or interventions using intelligent algorithms, have the potential to address this issue. Many such systems have been developed and evaluated individually, but there is a need to synthesise the evaluation findings to identify gaps and ensure that future recommender systems are designed to have a positive impact on health or target behaviours. OBJECTIVE: The purpose of this review is to provide an overview of the state of the literature evaluating health recommender systems and highlight lessons learnt, methodological considerations and gaps in current research. METHODS AND ANALYSIS: The review will follow the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews and the Population, Concept, and Context frameworks. Five databases (PubMED, ACM Digital Library Full-Text Collection, IEEE Xplore, Web of Science and ScienceDirect) will be searched for studies published in English that evaluate at least one health recommender system using search terms following the themes reflecting digital health, recommendation systems and evaluations of efficacy and impact. After using EndNote 21 for initial screening, two independent reviewers will screen the titles, abstracts and full texts of the references, and then extract data from included studies related to the recommender system characteristics, evaluation design and evaluation findings into a predetermined form. A descriptive analysis will be conducted to provide an overview of the literature; key themes and gaps in the literature will be discussed. ETHICS AND DISSEMINATION: Ethical approval is not required as data will be obtained from already published sources. Findings from this study will be disseminated via publication in a peer-reviewed journal.

Self-Management Systems for Patients and Clinicians in Parkinson Care: Protocol for an Integrated Scoping Review, Product Search, and Evaluation.

BACKGROUND: Parkinson disease (PD) poses emotional and financial challenges to patients, families, caregivers, and health care systems. Self-management systems show promise in empowering people with PD and enabling more control over their treatment. The collaborative nature of PD care requires communication between patients and health care professionals. While past reviews explored self-management systems in PD diagnosis and symptom management with a focus on patient portals, there is limited research addressing the interconnectivity of systems catering to the needs of both patients and clinicians. A system's acceptability and usability for clinicians are pivotal for enabling comprehensive data collection and supporting clinical decision-making, which can enhance patient care and treatment outcomes. OBJECTIVE: This review study aims to assess PD self-management systems that include a clinician portal and to determine which features enhance acceptability and usability for clinicians. The primary aim is to assess evidence of clinicians' acceptability and usability of self-management systems with a focus on the integration of systems into clinical workflows, data collection points, monitoring, clinical decision-making support, and extended education and training. METHODS: The review will entail 3 separate stages: a literature review following the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines, a product search, and an evaluation of the level of evidence for the identified products. For the first stage, 5 databases will be searched: PubMed, CINAHL, Scopus, ACM digital library, and IEEE Xplore. Studies eligible for inclusion will be qualitative, quantitative, and mixed methods studies examining patients' and clinician's perceptions of the acceptability and usability of digital health interventions, synthesized by a narrative qualitative analysis. A web search in the iOS Apple App Store and Android Google Play Store will identify currently available tools; the level of evidence for these will then be assessed using the Oxford Centre for Evidence-Based Medicine guidelines. RESULTS: Literature search and screening began soon after submission of the protocol, and the review is expected to be completed by end of September 2024. CONCLUSIONS: This review will examine currently available self-management systems in PD care, focusing on their acceptability and usability. This is significant because there is limited research addressing the integration of clinicians into these systems. The findings from this study may provide critical knowledge and insight to help inform future research and will contribute to the design of self-management systems that promote collaborative efforts in PD care. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/58845.

Development of a Mental Health Apps Recommender Platform.

INTRODUCTION: The aim of the paper is to establish the requirements and methodology for the development and implementation of a recommender system for mental health apps to support patients in self-managing their mental health while awaiting formal treatment. METHODS: The system was developed using an algorithm-based approach, including: (1) user needs assessment through literature review and interviews with various stakeholders, (2) software modelling and prototype creation, and (3) bench testing of the prototype with health experts and users. RESULTS: Based on initial exploration of users' requirements, relevant standards and regulations, a library of trusted mental health apps was compiled and a recommendation engine was built to generate accurate user profiles and deliver personalised health recommendations, which will be further tested to ensure quality. CONCLUSION: Developing a constructive mental health recommendation system requires the establishment of clear and comprehensive requirements, as well as a robust methodology adressing concerns related to data security, confidentiality, safety, and reliability. Subsequent research may compare various indicators of mental health outcomes at the start and end of patients' waiting period to gain more insights into how the recommender system could be further improved to enhance user experience and their overall well-being.

Accuracy and safety of an autonomous artificial intelligence clinical assistant conducting telemedicine follow-up assessment for cataract surgery.

Background: Artificial intelligence deployed to triage patients post-cataract surgery could help to identify and prioritise individuals who need clinical input and to expand clinical capacity. This study investigated the accuracy and safety of an autonomous telemedicine call (Dora, version R1) in detecting cataract surgery patients who need further management and compared its performance against ophthalmic specialists. Methods: 225 participants were recruited from two UK public teaching hospitals after routine cataract surgery between 17 September 2021 and 31 January 2022. Eligible patients received a call from Dora R1 to conduct a follow-up assessment approximately 3 weeks post cataract surgery, which was supervised in real-time by an ophthalmologist. The primary analysis compared decisions made independently by Dora R1 and the supervising ophthalmologist about the clinical significance of five symptoms and whether the patient required further review. Secondary analyses used mixed methods to examine Dora R1's usability and acceptability and to assess cost impact compared to standard care. This study is registered with ClinicalTrials.gov (NCT05213390) and ISRCTN (16038063). Findings: 202 patients were included in the analysis, with data collection completed on 23 March 2022. Dora R1 demonstrated an overall outcome sensitivity of 94% and specificity of 86% and showed moderate to strong agreement (kappa: 0.758-0.970) with clinicians in all parameters. Safety was validated by assessing subsequent outcomes: 11 of the 117 patients (9%) recommended for discharge by Dora R1 had unexpected management changes, but all were also recommended for discharge by the supervising clinician. Four patients were recommended for discharge by Dora R1 but not the clinician; none required further review on callback. Acceptability, from interviews with 20 participants, was generally good in routine circumstances but patients were concerned about the lack of a 'human element' in cases with complications. Feasibility was demonstrated by the high proportion of calls completed autonomously (195/202, 96.5%). Staff cost benefits for Dora R1 compared to standard care were £35.18 per patient. Interpretation: The composite of mixed methods analysis provides preliminary evidence for the safety, acceptability, feasibility, and cost benefits for clinical adoption of an artificial intelligence conversational agent, Dora R1, to conduct follow-up assessment post-cataract surgery. Further evaluation in real-world implementation should be conducted to provide additional evidence around safety and effectiveness in a larger sample from a more diverse set of Trusts. Funding: This manuscript is independent research funded by the National Institute for Health Research and NHSX (Artificial Intelligence in Health and Care Award, AI_AWARD01852).

Impact of Responsible AI on the Occurrence and Resolution of Ethical Issues: Protocol for a Scoping Review.

BACKGROUND: Responsible artificial intelligence (RAI) emphasizes the use of ethical frameworks implementing accountability, responsibility, and transparency to address concerns in the deployment and use of artificial intelligence (AI) technologies, including privacy, autonomy, self-determination, bias, and transparency. Standards are under development to guide the support and implementation of AI given these considerations. OBJECTIVE: The purpose of this review is to provide an overview of current research evidence and knowledge gaps regarding the implementation of RAI principles and the occurrence and resolution of ethical issues within AI systems. METHODS: A scoping review following Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) guidelines was proposed. PubMed, ERIC, Scopus, IEEE Xplore, EBSCO, Web of Science, ACM Digital Library, and ProQuest (Arts and Humanities) will be systematically searched for articles published since 2013 that examine RAI principles and ethical concerns within AI. Eligibility assessment will be conducted independently and coded data will be analyzed along themes and stratified across discipline-specific literature. RESULTS: The results will be included in the full scoping review, which is expected to start in June 2024 and completed for the submission of publication by the end of 2024. CONCLUSIONS: This scoping review will summarize the state of evidence and provide an overview of its impact, as well as strengths, weaknesses, and gaps in research implementing RAI principles. The review may also reveal discipline-specific concerns, priorities, and proposed solutions to the concerns. It will thereby identify priority areas that should be the focus of future regulatory options available, connecting theoretical aspects of ethical requirements for principles with practical solutions. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/52349.

The conceptualisation and measurement of engagement in digital health.

Digital tools are an increasingly important component of healthcare, but their potential impact is commonly limited by a lack of user engagement. Digital health evaluations of engagement are often restricted to system usage metrics, which cannot capture a full understanding of how and why users engage with an intervention. This study aimed to examine how theory-based, multifaceted measures of engagement with digital health interventions capture different components of engagement (affective, cognitive, behavioural, micro, and macro) and to consider areas that are unclear or missing in their measurement. We identified and compared two recently developed measures that met these criteria (the Digital Behaviour Change Intervention Engagement Scale and the TWente Engagement with Ehealth Technologies Scale). Despite having similar theoretical bases and being relatively strongly correlated, there are key differences in how these scales aim to capture engagement. We discuss the implications of our analysis for how affective, cognitive, and behavioural components of engagement can be conceptualised and whether there is value in distinguishing between them. We conclude with recommendations for the circumstances in which each scale may be most useful and for how future measure development could supplement existing scales.

Barriers and facilitators to parents' engagement with and perceived impact of a childhood obesity app: A mixed-methods study.

Childhood obesity is a growing global health concern. Although mobile health apps have the potential to deliver behavioural interventions, their impact is commonly limited by a lack of sufficient engagement. The purpose of this study was to explore barriers and facilitators to engagement with a family-focused app and its perceived impact on motivation, self-efficacy, and behaviour. Parents with at least one child under 18 and healthcare professionals working with children were recruited; all participants were allocated to use the NoObesity app over a 6-month period. The mixed-methods design was based on the Non-adoption, Abandonment, Scale-Up, Spread, and Sustainability and Reach, Effectiveness, Adoption, Implementation, and Maintenance frameworks. Qualitative and quantitative data were gathered through semi-structured interviews, questionnaires, and app use data (logins and in-app self-reported data). 35 parents were included in the final analysis; quantitative results were analysed descriptively and thematic analysis was conducted on the qualitative data. Key barriers to engagement were boredom, forgetting, and usability issues and key barriers to potential impact on behaviours were accessibility, lack of motivation, and family characteristics. Novelty, gamification features, reminders, goal setting, progress monitoring and feedback, and suggestions for healthy foods and activities were key facilitators to engagement with the app and behaviours. A key observation was that intervention strategies could help address many motivation and capability barriers, but there was a gap in strategies addressing opportunity barriers. Without incorporating strategies that successfully mitigate barriers in all three determinants of behaviour, an intervention is unlikely to be successful. We highlight key recommendations for developers to consider when designing the features and implementation of digital health interventions. Trial Registration: ClinicalTrials.gov (NCT05261555).

Incorporating usability evaluation into iterative development of an online platform to support research participation in Parkinson's disease: a mixed methods protocol.

INTRODUCTION: Many people with Parkinson's (PwP) are not given the opportunity or do not have adequate access to participate in clinical research. To address this, we have codeveloped with users an online platform that connects PwP to clinical studies in their local area. It enables site staff to communicate with potential participants and aims to increase the participation of the Parkinson's community in research. This protocol outlines the mixed methods study protocol for the usability testing of the platform. METHODS AND ANALYSIS: We will seek user input to finalise the platform's design, which will then be deployed in a limited launch for beta testing. The beta version will be used as a recruitment tool for up to three studies with multiple UK sites. Usability data will be collected from the three intended user groups: PwP, care partners acting on their behalf and site study coordinators. Usability questionnaires and website analytics will be used to capture user experience quantitatively, and a purposive sample of users will be invited to provide further feedback via semistructured interviews. Quantitative data will be analysed using descriptive statistics, and a thematic analysis undertaken for interview data. Data from this study will inform future platform iterations. ETHICS AND DISSEMINATION: Ethical approval was obtained from the University of Plymouth (3291; 3 May 2022). We will share our findings via a 'Latest News' section within the platform, presentations, conference meetings and national PwP networks.

Potential associations between behavior change techniques and engagement with mobile health apps: a systematic review.

Introduction: Lack of engagement is a common challenge for digital health interventions. To achieve their potential, it is necessary to understand how best to support users' engagement with interventions and target health behaviors. The aim of this systematic review was to identify the behavioral theories and behavior change techniques being incorporated into mobile health apps and how they are associated with the different components of engagement. Methods: The review was structured using the PRISMA and PICOS frameworks and searched six databases in July 2022: PubMed, Embase, CINAHL, APA PsycArticles, ScienceDirect, and Web of Science. Risk of bias was evaluated using the Cochrane Collaboration Risk of Bias 2 and the Mixed Methods Appraisal Tools. Analysis: A descriptive analysis provided an overview of study and app characteristics and evidence for potential associations between Behavior Change Techniques (BCTs) and engagement was examined. Results: The final analysis included 28 studies. Six BCTs were repeatedly associated with user engagement: goal setting, self-monitoring of behavior, feedback on behavior, prompts/cues, rewards, and social support. There was insufficient data reported to examine associations with specific components of engagement, but the analysis indicated that the different components were being captured by various measures. Conclusion: This review provides further evidence supporting the use of common BCTs in mobile health apps. To enable developers to leverage BCTs and other app features to optimize engagement in specific contexts and individual characteristics, we need a better understanding of how BCTs are associated with different components of engagement. Systematic review registration: https://www.crd.york.ac.uk/prospero/, identifier CRD42022312596.

At home EEG monitoring technologies for people with epilepsy and intellectual disabilities: A scoping review.

BACKGROUND: Conducting electroencephalography in people with intellectual disabilities (PwID) can be challenging, but the high proportion of PwID who experience seizures make it an essential part of their care. To reduce hospital-based monitoring, interventions are being developed to enable high-quality EEG data to be collected at home. This scoping review aims to summarise the current state of remote EEG monitoring research, potential benefits and limitations of the interventions, and inclusion of PwID in this research. METHODS: The review was structured using the PRISMA extension for Scoping Reviews and the PICOS framework. Studies that evaluated a remote EEG monitoring intervention in adults with epilepsy were retrieved from the PubMed, MEDLINE, Embase, CINAHL, Web of Science, and ClinicalTrials.gov databases. A descriptive analysis provided an overview of the study and intervention characteristics, key results, strengths, and limitations. RESULTS: 34,127 studies were retrieved and 23 were included. Five types of remote EEG monitoring were identified. Common benefits included producing useful results of comparable quality to inpatient monitoring and patient experience. A common limitation was the challenge of capturing all seizures with a small number of localised electrodes. No randomised controlled trials were included, few studies reported sensitivity and specificity, and only three considered PwID. CONCLUSIONS: Overall, the studies demonstrated the feasibility of remote EEG interventions for out-of-hospital monitoring and their potential to improve data collection and quality of care for patients. Further research is needed on the effectiveness, benefits, and limitations of remote EEG monitoring compared to in-patient monitoring, especially for PwID.

Artificial Intelligence Applications for Assessment, Monitoring, and Management of Parkinson Disease Symptoms: Protocol for a Systematic Review.

BACKGROUND: Parkinson disease (PD) is the second most prevalent neurodegenerative disease, with around 10 million people with PD worldwide. Current assessments of PD symptoms are conducted by questionnaires and clinician assessments and have many limitations, including unreliable reporting of symptoms, little autonomy for patients over their disease management, and standard clinical review intervals regardless of disease status or clinical need. To address these limitations, digital technologies including wearable sensors, smartphone apps, and artificial intelligence (AI) methods have been implemented for this population. Many reviews have explored the use of AI in the diagnosis of PD and management of specific symptoms; however, there is limited research on the application of AI to the monitoring and management of the range of PD symptoms. A comprehensive review of the application of AI methods is necessary to address the gap of high-quality reviews and highlight the developments of the use of AI within PD care. OBJECTIVE: The purpose of this protocol is to guide a systematic review to identify and summarize the current applications of AI applied to the assessment, monitoring, and management of PD symptoms. METHODS: This review protocol was structured using the PRISMA-P (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols) and the Population, Intervention, Comparator, Outcome, and Study (PICOS) frameworks. The following 5 databases will be systematically searched: PubMed, IEEE Xplore, Institute for Scientific Information's Web of Science, Scopus, and the Cochrane Library. Title and abstract screening, full-text review, and data extraction will be conducted by 2 independent reviewers. Data will be extracted into a predetermined form, and any disagreements in screening or extraction will be discussed. Risk of bias will be assessed using the Cochrane Collaboration Risk of Bias 2 tool for randomized trials and the Mixed Methods Appraisal Tool for nonrandomized trials. RESULTS: As of April 2023, this systematic review has not yet been started. It is expected to begin in May 2023, with the aim to complete by September 2023. CONCLUSIONS: The systematic review subsequently conducted as a product of this protocol will provide an overview of the AI methods being used for the assessment, monitoring, and management of PD symptoms. This will identify areas for further research in which AI methods can be applied to the assessment or management of PD symptoms and could support the future implementation of AI-based tools for the effective management of PD. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/46581.

Impact of digital technologies on self-efficacy in people with Parkinson's: a scoping review protocol.

INTRODUCTION: Parkinson's disease (PD) is the second most common neurological disease globally, for which currently no one definitive cause or cure exists. Estimates suggest that 145 000 people with Parkinson's (PwP) live in the UK. PD presents with motor and non-motor symptoms fluctuating significantly in and between individuals continually throughout the day. PD adversely affects activities of daily living, quality of life and well-being. Self-efficacy is an important belief to improve for PwP as it enables the individual to develop confidence in their ability to exert control over their own motivation, behaviour and social environment. This scoping review aims to identify digital technologies which have been shown to positively impact on promoting self-efficacy in PwP. METHODS AND ANALYSES: Six bibliographic databases MEDLINE, PsycINFO, Web of Science, CINAHL, EMBASE and IEEE Xplore will be searched from the date of their inception to the May 2023. The primary outcome will be to identify interventions which are associated with a change in self-efficacy in PwP to enable positive and negative outcomes, as well as safety to be evaluated. The secondary outcomes of this review will focus on the intervention's proposed mechanisms for success, particularly looking at the impact they had on positive behaviour change(s) or modification(s) on study participants. ETHICS AND DISSEMINATION: This scoping review will not require ethical approval as it will use data collected from previously published primary studies. The findings of this review will be published in peer-reviewed journals and widely disseminated.

The Impact of a Digital Artificial Intelligence System on the Monitoring and Self-management of Nonmotor Symptoms in People With Parkinson Disease: Proposal for a Phase 1 Implementation Study.

BACKGROUND: Nonmotor symptoms of Parkinson disease are a major factor of disease burden but are often underreported in clinical appointments. A digital tool has been developed to support the monitoring and management of nonmotor symptoms. OBJECTIVE: The aim of this study is to establish evidence of the impact of the system on patient confidence, knowledge, and skills for self-management of nonmotor symptoms, symptom burden, and quality of life of people with Parkinson and their care partners. It will also evaluate the usability, acceptability, and potential for adoption of the system for people with Parkinson, care partners, and health care professionals. METHODS: A mixed methods implementation and feasibility study based on the nonadoption, abandonment, scale-up, spread, and sustainability framework will be conducted with 60 person with Parkinson-care partner dyads and their associated health care professionals. Participants will be recruited from outpatient clinics at the University Hospitals Plymouth NHS Trust Parkinson service. The primary outcome, patient activation, will be measured over the 12-month intervention period; secondary outcomes include the system's impact on health and well-being outcomes, safety, usability, acceptability, engagement, and costs. Semistructured interviews with a subset of participants will gather a more in-depth understanding of user perspectives and experiences with the system. Repeated measures analysis of variance will analyze change over time and thematic analysis will be conducted on qualitative data. The study was peer reviewed by the Parkinson's UK Non-Drug Approaches grant board and is pending ethical approval. RESULTS: The study won funding in August 2021; data collection is expected to begin in December 2022. CONCLUSIONS: The study's success criteria will be affirming evidence regarding the system's feasibility, usability and acceptability, no serious safety risks identified, and an observed positive impact on patient activation. Results will be disseminated in academic peer-reviewed journals and in platforms and formats that are accessible to the general public, guided by patient and public collaborators. TRIAL REGISTRATION: ClinicalTrials.gov NCT05414071; https://clinicaltrials.gov/ct2/show/NCT05414071. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/40317.

Self-management Interventions for People With Parkinson Disease: Scoping Review.

BACKGROUND: Parkinson disease can impose substantial distress and costs on patients, their families and caregivers, and health care systems. To address these burdens for families and health care systems, there is a need to better support patient self-management. To achieve this, an overview of the current state of the literature on self-management is needed to identify what is being done, how well it is working, and what might be missing. OBJECTIVE: The aim of this scoping review was to provide an overview of the current body of research on self-management interventions for people with Parkinson disease and identify any knowledge gaps. METHODS: The PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) and Population, Intervention, Comparator, Outcome, and Study type frameworks were used to structure the methodology of the review. Due to time and resource constraints, 1 reviewer systematically searched 4 databases (PubMed, Ovid, Scopus, and Web of Science) for the evaluations of self-management interventions for Parkinson disease published in English. The references were screened using the EndNote X9 citation management software, titles and abstracts were manually reviewed, and studies were selected for inclusion based on the eligibility criteria. Data were extracted into a pre-established form and synthesized in a descriptive analysis. RESULTS: There was variation among the studies on study design, sample size, intervention type, and outcomes measured. The randomized controlled trials had the strongest evidence of effectiveness: 5 out of 8 randomized controlled trials found a significant difference between groups favoring the intervention on their primary outcome, and the remaining 3 had significant effects on at least some of the secondary outcomes. The 2 interventions included in the review that targeted mental health outcomes both found significant changes over time, and the 3 algorithms evaluated performed well. The remaining studies examined patient perceptions, acceptability, and cost-effectiveness and found generally positive results. CONCLUSIONS: This scoping review identified a wide variety of interventions designed to support various aspects of self-management for people with Parkinson disease. The studies all generally reported positive results, and although the strength of the evidence varied, it suggests that self-management interventions are promising for improving the care and outcomes of people with Parkinson disease. However, the research tended to focus on the motor aspects of Parkinson disease, with few nonmotor or holistic interventions, and there was a lack of evaluation of cost-effectiveness. This research will be important to providing self-management interventions that meet the varied and diverse needs of people with Parkinson disease and determining which interventions are worth promoting for widespread adoption.

Humanizing Health and Social Care Support for People With Intellectual and Developmental Disabilities: Protocol for a Scoping Review.

BACKGROUND: Health care is shifting toward a more person-centered model; however, people with intellectual and developmental disabilities can still experience difficulties in accessing equitable health care. Given these difficulties, it is important to consider how humanizing principles, such as empathy and respect, can be best incorporated into health and social care practices for people with intellectual and developmental disabilities to ensure that they are receiving equitable treatment and support. OBJECTIVE: The purpose of our scoping review is to provide an overview of the current research landscape and knowledge gaps regarding the development and implementation of interventions based on humanizing principles that aim to improve health and social care practices for people with intellectual and developmental disabilities. METHODS: The PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) and PICOS (Population, Intervention, Comparator, Outcome, and Study) frameworks will be used to structure the review. A total of 6 databases (PubMed, MEDLINE, Embase, CINAHL, PsycINFO, and Web of Science) will be searched for English articles published in the previous 10 years that describe or evaluate health and social care practice interventions underpinned by the humanizing principles of empathy, compassion, dignity, and respect. Two reviewers will screen and select references based on the eligibility criteria and extract the data into a predetermined form. A descriptive analysis will be conducted to summarize the results and provide an overview of interventions in the following three main care areas: health care, social care, and informal social support. RESULTS: The results will be included in the scoping review, which is expected to begin in October 2022 and be completed and submitted for publication by January 2023. CONCLUSIONS: Our scoping review will summarize the state of the field of interventions that are using humanizing principles to improve health and social care for adults with intellectual and developmental disabilities. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/31720.

A Scoping Review of Digital Twins in the Context of the Covid-19 Pandemic.

Background: Digital Twins (DTs), virtual copies of physical entities, are a promising tool to help manage and predict outbreaks of Covid-19. By providing a detailed model of each patient, DTs can be used to determine what method of care will be most effective for that individual. The improvement in patient experience and care delivery will help to reduce demand on healthcare services and to improve hospital management. Objectives: The aim of this study is to address 2 research questions: (1) How effective are DTs in predicting and managing infectious diseases such as Covid-19? and (2) What are the prospects and challenges associated with the use of DTs in healthcare? Methods: The review was structured according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) framework. Titles and abstracts of references in PubMed, IEEE Xplore, Scopus, ScienceDirect and Google Scholar were searched using selected keywords (relating to digital twins, healthcare and Covid-19). The papers were screened in accordance with the inclusion and exclusion criteria so that all papers published in English relating to the use of digital twins in healthcare were included. A narrative synthesis was used to analyse the included papers. Results: Eighteen papers met the inclusion criteria and were included in the review. None of the included papers examined the use of DTs in the context of Covid-19, or infectious disease outbreaks in general. Academic research about the applications, opportunities and challenges of DT technology in healthcare in general was found to be in early stages. Conclusions: The review identifies a need for further research into the use of DTs in healthcare, particularly in the context of infectious disease outbreaks. Based on frameworks identified during the review, this paper presents a preliminary conceptual framework for the use of DTs for hospital management during the Covid-19 outbreak to address this research gap.

Life Course Digital Twins-Intelligent Monitoring for Early and Continuous Intervention and Prevention (LifeTIME): Proposal for a Retrospective Cohort Study.

BACKGROUND: Multimorbidity, which is associated with significant negative outcomes for individuals and health care systems, is increasing in the United Kingdom. However, there is a lack of knowledge about the risk factors (including health, behavior, and environment) for multimorbidity over time. An interdisciplinary approach is essential, as data science, artificial intelligence, and engineering concepts (digital twins) can identify key risk factors throughout the life course, potentially enabling personalized simulation of life-course risk for the development of multimorbidity. Predicting the risk of developing clusters of health conditions before they occur would add clinical value by enabling targeted early preventive interventions, advancing personalized care to improve outcomes, and reducing the burden on health care systems. OBJECTIVE: This study aims to identify key risk factors that predict multimorbidity throughout the life course by developing an intelligent agent using digital twins so that early interventions can be delivered to improve health outcomes. The objectives of this study are to identify key predictors of lifetime risk of multimorbidity, create a series of simulated computational digital twins that predict risk levels for specific clusters of factors, and test the feasibility of the system. METHODS: This study will use machine learning to develop digital twins by identifying key risk factors throughout the life course that predict the risk of later multimorbidity. The first stage of the development will be the training of a base predictive model. Data from the National Child Development Study, the North West London Integrated Care Record, the Clinical Practice Research Datalink, and Cerner's Real World Data will be split into subsets for training and validation, which will be done following the k-fold cross-validation procedure and assessed with the Prediction Model Risk of Bias Assessment Tool (PROBAST). In addition, 2 data sets-the Early-Life Data Cross-linkage in Research study and the Children and Young People's Health Partnership randomized controlled trial-will be used to develop a series of digital twin personas that simulate clusters of factors to predict different risk levels of developing multimorbidity. RESULTS: The expected results are a validated model, a series of digital twin personas, and a proof-of-concept assessment. CONCLUSIONS: Digital twins could provide an individualized early warning system that predicts the risk of future health conditions and recommends the most effective intervention to minimize that risk. These insights could significantly improve an individual's quality of life and healthy life expectancy and reduce population-level health burdens. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/35738.

The Role of Health Kiosks: Scoping Review.

BACKGROUND: Health kiosks are publicly accessible computing devices that provide access to services, including health information provision, clinical measurement collection, patient self-check-in, telemonitoring, and teleconsultation. Although the increase in internet access and ownership of smart personal devices could make kiosks redundant, recent reports have predicted that the market will continue to grow. OBJECTIVE: We seek to clarify the current and future roles of health kiosks by investigating the settings, roles, and clinical domains in which kiosks are used; whether usability evaluations of health kiosks are being reported, and if so, what methods are being used; and what the barriers and facilitators are for the deployment of kiosks. METHODS: We conducted a scoping review using a bibliographic search of Google Scholar, PubMed, and Web of Science databases for studies and other publications between January 2009 and June 2020. Eligible papers described the implementation as primary studies, systematic reviews, or news and feature articles. Additional reports were obtained by manual searching and querying the key informants. For each article, we abstracted settings, purposes, health domains, whether the kiosk was opportunistic or integrated with a clinical pathway, and whether the kiosk included usability testing. We then summarized the data in frequency tables. RESULTS: A total of 141 articles were included, of which 134 (95%) were primary studies, and 7 (5%) were reviews. Approximately 47% (63/134) of the primary studies described kiosks in secondary care settings. Other settings included community (32/134, 23.9%), primary care (24/134, 17.9%), and pharmacies (8/134, 6%). The most common roles of the health kiosks were providing health information (47/134, 35.1%), taking clinical measurements (28/134, 20.9%), screening (17/134, 12.7%), telehealth (11/134, 8.2%), and patient registration (8/134, 6.0%). The 5 most frequent health domains were multiple conditions (33/134, 24.6%), HIV (10/134, 7.5%), hypertension (10/134, 7.5%), pediatric injuries (7/134, 5.2%), health and well-being (6/134, 4.5%), and drug monitoring (6/134, 4.5%). Kiosks were integrated into the clinical pathway in 70.1% (94/134) of studies, opportunistic kiosks accounted for 23.9% (32/134) of studies, and in 6% (8/134) of studies, kiosks were used in both. Usability evaluations of kiosks were reported in 20.1% (27/134) of papers. Barriers (e.g., use of expensive proprietary software) and enablers (e.g., handling of on-demand consultations) of deploying health kiosks were identified. CONCLUSIONS: Health kiosks still play a vital role in the health care system, including collecting clinical measurements and providing access to web-based health services and information to those with little or no digital literacy skills and others without personal internet access. We identified research gaps, such as training needs for teleconsultations and scant reporting on usability evaluation methods.