Journal of Medical Internet Research最新文献

{"title":"Telemonitoring for Chronic Heart Failure: Narrative Review of the 20-Year Journey From Concept to Standard Care in Germany.","authors":"Sebastian Spethmann, Gerhard Hindricks, Kerstin Koehler, Stefan Stoerk, Christiane E Angermann, Michael Böhm, Birgit Assmus, Sebastian Winkler, Martin Möckel, Mirja Mittermaier, Monika Lelgemann, Daniel Reuter, Ralph Bosch, Alexander Albrecht, Stephan von Haehling, Thomas M Helms, Stefan Sack, Tarek Bekfani, Jan Wolfgang Gröschel, Magdalena Koehler, Christoph Melzer, Jan Wintrich, Bettina Zippel-Schultz, Georg Ertl, Claus Vogelmeier, Nikolaos Dagres, Jasmin Zernikow, Friedrich Koehler","doi":"10.2196/63391","DOIUrl":"https://doi.org/10.2196/63391","url":null,"abstract":"<p><strong>Background: </strong>Chronic heart failure (CHF) is a major cause of morbidity and mortality worldwide, placing a significant burden on health care systems. The concept of telemedicine for CHF was first introduced in the late 1990s, and since 2010, studies have demonstrated its potential to improve patient outcomes and reduce health care costs. Over the following decade, technological advancements and changes in health care policy led to the development of more sophisticated telemedicine solutions for CHF, including remote patient management through invasive or noninvasive telemonitoring devices, mobile apps, and virtual consultations. Years of public funding in Germany have generated evidence that remote patient management improves outcomes for patients with CHF, such as quality of life, and reduces hospital admissions. Based on these data, the Federal Joint Committee (Gemeinsamer Bundesausschuss; G-BA) decided, independently of the current European Society of Cardiology recommendations, to incorporate telemedicine as a standard digital intervention for high-risk patients with reduced left ventricular ejection fraction in Germany in 2020.</p><p><strong>Objective: </strong>This review aims to illustrate the journey from the initial concept through pioneering studies that led to telemedicine's integration into standard care, and to share current experiences that have positioned Germany as a leader in cardiovascular telemedicine.</p><p><strong>Methods: </strong>We review and discuss existing literature and evidence on the development and implementation of telemonitoring for CHF in Germany over the past 20 years. Relevant studies, reports, and guidelines were identified through a comprehensive search of electronic databases, including PubMed, Google Scholar, and specialized journals focused on CHF telemonitoring.</p><p><strong>Results: </strong>Pioneering studies, such as the TIM-HF2 (Telemedical Interventional Management in Heart Failure II) and IN-TIME (Influence of Home Monitoring on Mortality and Morbidity in Heart Failure Patients with Impaired Left Ventricular Function) trials, demonstrated the effectiveness of remote patient management applications for patients with CHF in Germany and their applicability to current practices involving both invasive and noninvasive methods. Collaborations between researchers and technology developers overcame barriers, leading to sustainable improvements in patient care. Ongoing research on artificial intelligence applications for prioritizing and interpreting individual health data will continue to transform digital health care.</p><p><strong>Conclusions: </strong>The establishment of telemedical care for patients with HF across Europe is likely to benefit from experiences in Germany, where significant improvements have been achieved in the care of patients with HF.</p>","PeriodicalId":16337,"journal":{"name":"Journal of Medical Internet Research","volume":"26 ","pages":"e63391"},"PeriodicalIF":5.8,"publicationDate":"2024-12-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142780302","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Investigating the Norwegian eHealth Governance Model: Document Study.","authors":"Line Helen Linstad, Hilde Bjørnå, Anne Moen, Truls Tunby Kristiansen, Anne Helen Hansen","doi":"10.2196/59717","DOIUrl":"https://doi.org/10.2196/59717","url":null,"abstract":"<p><strong>Background: </strong>Governments and policy makers struggle to achieve a balance between hierarchical steering and horizontal governance in systems characterized by fragmented decision authority and multiple interests. To realize its One Citizen-One Journal eHealth policy vision, the Norwegian government established a special eHealth board of stakeholders to create an inclusive governance model that aligned stakeholders' interests with the government's ambitions through coordination and consensus. Little empirical knowledge exists on how countries realize inclusive governance models.</p><p><strong>Objective: </strong>This study aims to investigate how the Norwegian inclusive eHealth governance model was developed as a tool to align the government's policy ambitions with stakeholders' concerns from January 2012 to December 2022.</p><p><strong>Methods: </strong>This document study used a thematic analysis based on a constructivist research approach. We included 16 policy documents and 175 consultation response documents issued between January 2012 and December 2022 related to the Norwegian One Citizen-One Journal policy implementation process. The themes were constructed deductively from a review of governance models and public governance theory and were applied as our analytical lens to each document. The findings were interpreted, analyzed, and synthesized.</p><p><strong>Results: </strong>The national policy implementation process progressed through 3 phases, with changes in stakeholder inclusion and perceived influence on the decision-making process characterizing transitions from phase to phase. Tension developed between 2 contrasting views regarding top-down government authority and stakeholders' autonomy. The view of the regional health trusts, municipalities, health care professional organizations, and industry actors contrasted with that of the patient organizations. Governmental insensitivity to participation, lack of transparency, and decreasing trust by stakeholder groups challenged the legitimacy of the inclusive governance model.</p><p><strong>Conclusions: </strong>We illustrated that Norway's One Citizen-One Journal policy trajectory was characterized by a process that unfolded across 3 distinct phases. The process was characterized by 2 contrasting stakeholder perspectives. Finally, it was shaped by diminishing trust in the inclusive governance model. The National eHealth Governance Board faced challenges in establishing legitimacy as a top-down inclusive governance model, primarily attributed to its addressing of participation, transparency, and trust dilemmas. Such dilemmas represent significant obstacles to inclusive governance models and require ongoing governmental vigilance and responsiveness from governmental entities.</p>","PeriodicalId":16337,"journal":{"name":"Journal of Medical Internet Research","volume":"26 ","pages":"e59717"},"PeriodicalIF":5.8,"publicationDate":"2024-12-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142780301","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Application of Chatbots to Help Patients Self-Manage Diabetes: Systematic Review and Meta-Analysis.","authors":"Yibo Wu, Jinzi Zhang, Pu Ge, Tingyu Duan, Junyu Zhou, Yiwei Wu, Yuening Zhang, Siyu Liu, Xinyi Liu, Erya Wan, Xinying Sun","doi":"10.2196/60380","DOIUrl":"10.2196/60380","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;The number of people with diabetes is on the rise globally. Self-management and health education of patients are the keys to control diabetes. With the development of digital therapies and artificial intelligence, chatbots have the potential to provide health-related information and improve accessibility and effectiveness in the field of patient self-management.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;This study systematically reviews the current research status and effectiveness of chatbots in the field of diabetes self-management to support the development of diabetes chatbots.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;A systematic review and meta-analysis of chatbots that can help patients with diabetes with self-management was conducted. PubMed and Web of Science databases were searched using keywords around diabetes, chatbots, conversational agents, virtual assistants, and more. The search period was from the date of creation of the databases to January 1, 2023. Research articles in English that fit the study topic were selected, and articles that did not fit the study topic or were not available in full text were excluded.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;In total, 25 studies were included in the review. In terms of study type, all articles could be classified as systematic design studies (n=8, 32%), pilot studies (n=8, 32%), and intervention studies (n=9, 36%). Many articles adopted a nonrandomized controlled trial design in intervention studies (n=6, 24%), and there was only 1 (4%) randomized controlled trial. In terms of research strategy, all articles can be divided into quantitative studies (n=10, 40%), mixed studies (n=6, 24%), and qualitative studies (n=1, 4%). The evaluation criteria for chatbot effectiveness can be divided into technical performance evaluation, user experience evaluation, and user health evaluation. Most chatbots (n=17, 68%) provided education and management focused on patient diet, exercise, glucose monitoring, medications, and complications, and only a few studies (n=2, 8%) provided education on mental health. The meta-analysis found that the chatbot intervention was effective in lowering blood glucose (mean difference 0.30, 95% CI 0.04-0.55; P=.02) and had no significant effect in reducing weight (mean difference 1.41, 95% CI -2.29 to 5.11; P=.46) compared with the baseline.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;Chatbots have potential for the development of self-management for people with diabetes. However, the evidence level of current research is low, and higher level research (such as randomized controlled trials) is needed to strengthen the evidence base. More use of mixed research in the research strategy is needed to fully use the strengths of both quantitative and qualitative research. Appropriate and innovative theoretical frameworks should be used in the research to provide theoretical support for the study. In addition, researchers should focus on the personalized and user-friendly intera","PeriodicalId":16337,"journal":{"name":"Journal of Medical Internet Research","volume":"26 ","pages":"e60380"},"PeriodicalIF":5.8,"publicationDate":"2024-12-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142769727","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Reflections From the Pandemic: Is Connectivism the Panacea for Clinicians?","authors":"Jennifer Benjamin, Tyson Pillow, Heather MacNeill, Ken Masters, Anoop Agrawal, Neil Mehta","doi":"10.2196/53344","DOIUrl":"https://doi.org/10.2196/53344","url":null,"abstract":"<p><p>The COVID-19 pandemic and the recent increased interest in generative artificial intelligence (GenAI) highlight the need for interprofessional communities' collaboration to find solutions to complex problems. A personal narrative experience of one of the authors compels us to reflect on current approaches to learning and knowledge acquisition and use solutions to the challenges posed by GenAI through social learning contexts using connectivism. We recognize the need for constructivism and experiential learning for knowledge acquisition to establish foundational understanding. We explore how connectivist approaches can enhance traditional constructivist paradigms amid rapidly changing learning environments and online communities. Learning in connectivism includes interacting with experts from other disciplines and creating nodes of accurate and accessible information while distinguishing between misinformation and accurate facts. Autonomy, connectedness, diversity, and openness are foundational for learners to thrive in this learning environment. Learning in this environment is not just acquiring new knowledge as individuals but being connected to networks of knowledge, enabling health professionals to stay current and up-to-date. Existing online communities with accessible GenAI solutions allow for the application of connectivist principles for learning and knowledge acquisition.</p>","PeriodicalId":16337,"journal":{"name":"Journal of Medical Internet Research","volume":"26 ","pages":"e53344"},"PeriodicalIF":5.8,"publicationDate":"2024-12-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142769785","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Predicting and Monitoring Symptoms in Patients Diagnosed With Depression Using Smartphone Data: Observational Study.","authors":"Arsi Ikäheimonen, Nguyen Luong, Ilya Baryshnikov, Richard Darst, Roope Heikkilä, Joel Holmen, Annasofia Martikkala, Kirsi Riihimäki, Outi Saleva, Erkki Isometsä, Talayeh Aledavood","doi":"10.2196/56874","DOIUrl":"10.2196/56874","url":null,"abstract":"<p><strong>Background: </strong>Clinical diagnostic assessments and the outcome monitoring of patients with depression rely predominantly on interviews by professionals and the use of self-report questionnaires. The ubiquity of smartphones and other personal consumer devices has prompted research into the potential of data collected via these devices to serve as digital behavioral markers for indicating the presence and monitoring of the outcome of depression.</p><p><strong>Objective: </strong>This paper explores the potential of using behavioral data collected with smartphones to detect and monitor depression symptoms in patients diagnosed with depression. Specifically, it investigates whether this data can accurately classify the presence of depression, as well as monitor the changes in depressive states over time.</p><p><strong>Methods: </strong>In a prospective cohort study, we collected smartphone behavioral data for up to 1 year. The study consists of observations from 164 participants, including healthy controls (n=31) and patients diagnosed with various depressive disorders: major depressive disorder (MDD; n=85), MDD with comorbid borderline personality disorder (n=27), and major depressive episodes with bipolar disorder (n=21). Data were labeled based on depression severity using 9-item Patient Health Questionnaire (PHQ-9) scores. We performed statistical analysis and used supervised machine learning on the data to classify the severity of depression and observe changes in the depression state over time.</p><p><strong>Results: </strong>Our correlation analysis revealed 32 behavioral markers associated with the changes in depressive state. Our analysis classified patients who are depressed with an accuracy of 82% (95% CI 80%-84%) and change in the presence of depression with an accuracy of 75% (95% CI 72%-76%). Notably, the most important smartphone features for classifying depression states were screen-off events, battery charge levels, communication patterns, app usage, and location data. Similarly, for predicting changes in depression state, the most important features were related to location, battery level, screen, and accelerometer data patterns.</p><p><strong>Conclusions: </strong>The use of smartphone digital behavioral markers to supplement clinical evaluations may aid in detecting the presence and changes in severity of symptoms of depression, particularly if combined with intermittent use of self-report of symptoms.</p>","PeriodicalId":16337,"journal":{"name":"Journal of Medical Internet Research","volume":"26 ","pages":"e56874"},"PeriodicalIF":5.8,"publicationDate":"2024-12-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142769578","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Correction: Comprehensive Symptom Prediction in Inpatients With Acute Psychiatric Disorders Using Wearable-Based Deep Learning Models: Development and Validation Study.","authors":"Minseok Hong, Ri-Ra Kang, Jeong Hun Yang, Sang Jin Rhee, Hyunju Lee, Yong-Gyom Kim, KangYoon Lee, HongGi Kim, Yu Sang Lee, Tak Youn, Se Hyun Kim, Yong Min Ahn","doi":"10.2196/69042","DOIUrl":"https://doi.org/10.2196/69042","url":null,"abstract":"<p><p>[This corrects the article DOI: 10.2196/65994.].</p>","PeriodicalId":16337,"journal":{"name":"Journal of Medical Internet Research","volume":"26 ","pages":"e69042"},"PeriodicalIF":5.8,"publicationDate":"2024-12-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142769520","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Challenges and Approaches to Recruitment for and Retention in a Dyad-Focused eHealth Intervention During COVID-19: Randomized Controlled Trial.","authors":"Chunxuan Ma, Rachel H Adler, Daria B Neidre, Ronald C Chen, Laurel L Northouse, Christine Rini, Xianming Tan, Lixin Song","doi":"10.2196/51877","DOIUrl":"10.2196/51877","url":null,"abstract":"<p><strong>Background: </strong>Family-based randomized controlled trials (RCTs) encounter recruitment and retention challenges. Cancer-focused RCTs typically recruit convenience samples from local cancer centers and hospitals.</p><p><strong>Objective: </strong>This study aimed to examine the recruitment and retention of a population-based, patient-partner dyad cohort in an RCT testing a dyadic eHealth intervention to improve the quality of life in patients with prostate cancer and their partners.</p><p><strong>Methods: </strong>In this 2-arm, parallel-group RCT, men who recently completed treatment for localized prostate cancer statewide were recruited through North Carolina Central Cancer Registry rapid case ascertainment between April 2018 and April 2021, coinciding with the COVID-19 pandemic. Patient-partner dyads underwent baseline assessments and were randomly assigned to either the intervention or control groups. Follow-up surveys were conducted at 4, 8, and 12 months after baseline. Descriptive and logistic regression analyses were used to achieve the study's aims.</p><p><strong>Results: </strong>Of the 3078 patients referred from rapid case ascertainment, 2899 were screened. A total of 357 partners were approached after obtaining the eligible patients' permission, 280 dyads completed baseline assessments and were randomized (dyad enrollment rate: 85.11%, 95% CI 81.3%-88.9%), and 221 dyads completed the 12-month follow-up (retention rate: 78.93%, 95% CI 74.2%-83.7%). Regarding the factors associated with retention, compared with White participants, people self-reporting as \"other races\" (including American Indian, Asian, and multiracial) were more likely to drop out of the study (odds ratio 2.78, 95% CI 1.10-7.04), and older participants were less likely to withdraw (odds ratio 0.96, 95% CI 0.92-0.99).</p><p><strong>Conclusions: </strong>Despite the negative impact of the pandemic, we successfully recruited enough patient-partner dyads to test our RCT hypotheses. Our recruitment and retention rates were equivalent to or higher than those in most dyadic intervention studies. A well-functioning research team and specific strategies (eg, eHealth intervention, internet phone, and online surveys) facilitated the recruitment and retention of patients with prostate cancer and their partners during the unprecedented pandemic.</p><p><strong>Trial registration: </strong>ClinicalTrials.gov NCT03489057; https://clinicaltrials.gov/study/NCT03489057.</p><p><strong>International registered report identifier (irrid): </strong>RR2-https://doi.org/10.1186/s13063-021-05948-5.</p>","PeriodicalId":16337,"journal":{"name":"Journal of Medical Internet Research","volume":"26 ","pages":"e51877"},"PeriodicalIF":5.8,"publicationDate":"2024-12-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142769588","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Patients' and Clinicians' Experiences Using a Real-Time Remote Monitoring System for Chemotherapy Symptom Management (ASyMS): Qualitative Study.","authors":"Lisa McCann, Liane Lewis, Olubukola Oduntan, Jenny Harris, Andrew Darley, Geir V Berg, Simone Lubowitzki, Katy Cheevers, Morven Miller, Jo Armes, Emma Ream, Patricia Fox, Eileen Patricia Furlong, Alexander Gaiger, Grigorios Kotronoulas, Elisabeth Patiraki, Stylianos Katsaragakis, Paul McCrone, Christine Miaskowski, Antonella Cardone, Dawn Orr, Adrian Flowerday, Simon Skene, Margaret Moore, Nicosha De Souza, Peter Donnan, Roma Maguire","doi":"10.2196/53834","DOIUrl":"10.2196/53834","url":null,"abstract":"<p><strong>Background: </strong>Patients receiving chemotherapy require ongoing symptom monitoring and management to optimize their outcomes. In recent years, digital remote monitoring interventions have emerged to provide enhanced cancer care delivery experiences to patients and clinicians. However, patient and clinician experiential evaluations of these technologies are rare. Therefore, we explored user experiences and perceptions of one such intervention-Advanced Symptom Management System (ASyMS)-after its scaled deployment in the context of the Electronic Symptom Management System Remote Technology (eSMART) trial. The eSMART trial was a large, multicenter randomized controlled trial to evaluate the efficacy of ASyMS in 12 clinical sites in 5 European countries.</p><p><strong>Objective: </strong>In this qualitative study, both patients' and clinicians' experiences of using ASyMS for up to 6 cycles of chemotherapy were explored to understand the impact of ASyMS on patients' experiences, clinical practice, and supportive care delivery.</p><p><strong>Methods: </strong>For this analysis, individual, semistructured, one-to-one interviews with 29 patients with breast, colorectal, and hematological cancers and 18 clinicians from Austria, Greece, Ireland, Norway, and the United Kingdom were conducted. Interviews focused on patients' and clinicians' experiences of using ASyMS, care organization and changes in practice following the introduction of ASyMS, perceived changes in care associated with the use of ASyMS, and its potential for future integration into routine chemotherapy care pathways.</p><p><strong>Results: </strong>Thematic analysis identified several themes that describe patients' and clinicians' experiences using ASyMS. One central orienting theme-ASyMS as a facilitator of change-was supported by 5 key themes associated with human and technology monitoring: reassurance, enhanced communications and relationships, knowing what is \"normal\" and what is to be expected, enhancing cancer care experiences, and informing future cancer care.</p><p><strong>Conclusions: </strong>This study is the first to evaluate both patients' and clinicians' experiences of using a digital health intervention to remotely monitor chemotherapy symptoms across 5 countries. Experiences with ASyMS were positive from both patients' and clinicians' perspectives, although some improvements to support the wider-scale rollout and sustained implementation were identified. Overall, this study demonstrates that real-time remote monitoring systems can help patients feel more reassured during their chemotherapy treatments and can help clinicians provide the right care, at the right time, and in the right place.</p><p><strong>Trial registration: </strong>ClinicalTrials.gov NCT02356081; https://clinicaltrials.gov/study/NCT02356081.</p><p><strong>International registered report identifier (irrid): </strong>RR2-10.1136/bmjopen-2016-015016.</p>","PeriodicalId":16337,"journal":{"name":"Journal of Medical Internet Research","volume":"26 ","pages":"e53834"},"PeriodicalIF":5.8,"publicationDate":"2024-12-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142769556","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Investigating the Best Practices for Engagement in Remote Participatory Design: Mixed Methods Analysis of 4 Remote Studies With Family Caregivers.","authors":"Anna Jolliff, Richard J Holden, Rupa Valdez, Ryan Coller, Himalaya Patel, Matthew Zuraw, Anna Linden, Aaron Ganci, Christian Elliott, Nicole E Werner","doi":"10.2196/60353","DOIUrl":"https://doi.org/10.2196/60353","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Digital health interventions are a promising method for delivering timely support to underresourced family caregivers. The uptake of digital health interventions among caregivers may be improved by engaging caregivers in participatory design (PD). In recent years, there has been a shift toward conducting PD remotely, which may enable participation by previously hard-to-reach groups. However, little is known regarding how best to facilitate engagement in remote PD among family caregivers.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;This study aims to (1) understand the context, quality, and outcomes of family caregivers' engagement experiences in remote PD and (2) learn which aspects of the observed PD approach facilitated engagement or need to be improved.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;We analyzed qualitative and quantitative data from evaluation and reflection surveys and interviews completed by research and community partners (family caregivers) across 4 remote PD studies. Studies focused on building digital health interventions for family caregivers. For each study, community partners met with research partners for 4 to 5 design sessions across 6 months. After each session, partners completed an evaluation survey. In 1 of the 4 studies, research and community partners completed a reflection survey and interview. Descriptive statistics were used to summarize quantitative evaluation and reflection survey data, while reflexive thematic analysis was used to understand qualitative data.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;In 62.9% (83/132) of evaluations across projects 1-3, participants described the session as \"very effective.\" In 74% (28/38) of evaluations for project 4, participants described feeling \"extremely satisfied\" with the session. Qualitative data relating to the engagement context identified that the identities of partners, the technological context of remote PD, and partners' understanding of the project and their role all influenced engagement. Within the domain of engagement quality, relationship-building and co-learning; satisfaction with prework, design activities, time allotted, and the final prototype; and inclusivity and the distribution of influence contributed to partners' experience of engagement. Outcomes of engagement included partners feeling an ongoing interest in the project after its conclusion, gratitude for participation, and a sense of meaning and self-esteem.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;These results indicate high satisfaction with remote PD processes and few losses specific to remote PD. The results also demonstrate specific ways in which processes can be changed to improve partner engagement and outcomes. Community partners should be involved from study inception in defining the problem to be solved, the approach used, and their roles within the project. Throughout the design process, online tools may be used to check partners' satisfaction with design processes and perceptions of inc","PeriodicalId":16337,"journal":{"name":"Journal of Medical Internet Research","volume":"26 ","pages":"e60353"},"PeriodicalIF":5.8,"publicationDate":"2024-12-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142769547","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Technology-Based Interventions for Substance Use Treatment Among People Who Identify as African American or Black, Hispanic or Latino, and American Indian or Alaska Native: Scoping Review.","authors":"Sarah K Moore, Jesse S Boggis, Phoebe R Gauthier, Chantal A Lambert-Harris, Emily G Hichborn, Kathleen D Bell, Elizabeth C Saunders, LaTrice Montgomery, Eilis I Murphy, Avery M Turner, Nico Agosti, Bethany M McLeman, Lisa A Marsch","doi":"10.2196/53685","DOIUrl":"https://doi.org/10.2196/53685","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;In the United States, racial and ethnic disparities in substance use treatment outcomes are persistent, especially among underrepresented minority (URM) populations. Technology-based interventions (TBIs) for substance use treatment show promise in reducing barriers to evidence-based treatment, yet no studies have described how TBIs may impact racial or ethnic health equity.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;This study explored whether TBIs in substance use treatment research promote health equity among people who identify as African American or Black, Hispanic or Latino, and American Indian or Alaska Native through their inclusion in research. We explored whether research that includes the aforementioned groups consciously considers race and/or ethnicity beyond including these populations as participants.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;We conducted a scoping review of 5 electronic databases to identify TBIs in substance use treatment studies published in English between January 2000 and March 2021. Studies were included if ≥50% of participants identified as African American or Black, Hispanic or Latino, or American Indian or Alaska Native when combined. Included studies were evaluated for conscious consideration of race and ethnicity in at least one manuscript section. Finally, we conducted a critical appraisal of each study's potential to facilitate insights into the impact of a TBI for members of specific URM groups.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;Of 6897 titles and abstracts screened and 1158 full-text articles assessed for eligibility, nearly half (532/1158, 45.9%) of the full-text articles were excluded due to the absence of data on race, ethnicity, or not meeting the aforementioned demographic eligibility criteria. Overall, 110 studies met the inclusion criteria. Study designs included 39.1% (43/110) randomized trials, and 35.5% (39/110) feasibility studies. In total, 47.3% (52/110) of studies used computer-based interventions, including electronic screening, brief interventions, and referrals to treatment, whereas 33.6% (37/110) used interactive voice response, ecological momentary assessment or interventions, or SMS text messaging via mobile phones. Studies focused on the following substances: alcohol or drugs (45/110, 40.9%), alcohol alone (26/110, 23.6%), opioids (8/110, 7.3%), cannabis (6/110, 5.5%), cocaine (4/110, 3.6%), and methamphetamines (3/110, 2.7%). Of the studies that consciously considered race or ethnicity (29/110, 26.4%), 6.4% (7/110) explicitly considered race or ethnicity in all manuscript sections. Overall, 28.2% (31/110) of the studies were critically appraised as having a high confidence in the interpretability of the findings for specific URM groups.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;While the prevalence of TBIs in substance use treatment has increased recently, studies that include and consciously consider URM groups are rare, especially for American Indian or Alaska Native and Hi","PeriodicalId":16337,"journal":{"name":"Journal of Medical Internet Research","volume":"26 ","pages":"e53685"},"PeriodicalIF":5.8,"publicationDate":"2024-12-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142769789","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}