@Article{info:doi/10.2196/59956,
author="Pierce, H. Joni
and Weir, Charlene
and Taft, Teresa
and Richards II, William
and McFarland, M. Mary
and Kawamoto, Kensaku
and Del Fiol, Guilherme
and Butler, M. Jorie",
title="Shared Decision-Making Tools Implemented in the Electronic Health Record: Scoping Review",
journal="J Med Internet Res",
year="2025",
month="Feb",
day="21",
volume="27",
pages="e59956",
keywords="shared decision-making",
keywords="patient engagement",
keywords="decision support",
keywords="electronic health records",
abstract="Background: Patient-centered care promotes the involvement of patients in decision-making related to their health care. The adoption and implementation of shared decision-making (SDM) into routine care are constrained by several obstacles, including technical and time constraints, clinician and patient attitudes and perceptions, and processes that exist outside the standardized clinical workflow. Objective: We aimed to understand the integration and implementation characteristics of reported SDM interventions integrated into an electronic health record (EHR) system. Methods: We conducted a scoping review using the methodological framework by Arksey and O'Malley with guidance from the Joanna Briggs Institute. Eligibility criteria included original research and reviews focusing on SDM situations in a real-world clinical setting and EHR integration of SDM tools and processes. We excluded retrospective studies, conference abstracts, simulation studies, user design studies, opinion pieces, and editorials. To identify eligible studies, we searched the following databases on January 11, 2021: MEDLINE, Embase, CINAHL Complete, Cochrane Library including CENTRAL, PsycINFO, Scopus, and Web of Science Core Collection. We systematically categorized descriptive data and key findings in a tabular format using predetermined data charting forms. Results were summarized using tables and associated narratives related to the review questions. Results: Of the 2153 studies, 18 (0.84\%) were included in the final review. There was a high degree of variation across studies, including SDM definitions, standardized measures, technical integration, and implementation strategies. SDM tools that targeted established health care processes promoted their use. Integrating SDM templates and tools into an EHR appeared to improve the targeted outcomes of most (17/18, 94\%) studies. Most SDM interventions were designed for clinicians. Patient-specific goals and values were included in 56\% (10/18) of studies. The 2 most common study outcome measures were SDM-related measures and SDM tool use. Conclusions: Understanding how to integrate SDM tools directly into a clinician's workflow within the EHR is a logical approach to promoting SDM into routine clinical practice. This review contributes to the literature by illuminating features of SDM tools that have been integrated into an EHR system. Standardization of SDM tools and processes, including the use of patient decision aids, is needed for consistency across SDM studies. The implementation approaches for SDM applications showed varying levels of planning and effort to promote SDM intervention awareness. Targeting accepted and established clinical processes may enhance the adoption and use of SDM tools. Future studies designed as randomized controlled trials are needed to expand the quality of the evidence base. This includes the study of integration methods into EHR systems as well as implementation methods and strategies deployed to operationalize the uptake of the SDM-integrated tools. Emphasizing patients' goals and values is another key area for future studies. ",
doi="10.2196/59956",
url="https://www.jmir.org/2025/1/e59956"
}


@Article{info:doi/10.2196/62931,
author="Moumjid, Nora
and Gotte, Constance
and Hommey, Sophie
and Poupon Bourdy, St{\'e}phanie
and Haesebaert, Julie
and Durieu, Isabelle
and Reynaud, Quitterie",
title="Mixed Comparative Evaluation of a Training Program Dedicated to Cystic Fibrosis Reference Centers: Protocol for the Pilot Implementation of Shared Decision-Making in the Treatment of Diabetes in Adult Patients With Cystic Fibrosis",
journal="JMIR Res Protoc",
year="2025",
month="Jan",
day="28",
volume="14",
pages="e62931",
keywords="shared decision-making",
keywords="implementation",
keywords="training",
keywords="decision aid",
keywords="cystic fibrosis",
abstract="Background: Diabetes affects half of the patients with cystic fibrosis who are aged 30 years and older. Diabetes progresses asymptomatically over a long period of time. Two treatment options are possible: start insulin as soon as cystic fibrosis diagnosis is made with the additional constraints of cystic fibrosis or wait while monitoring the patient's clinical condition and start insulin when diabetes symptoms develop and therefore later. This situation is particularly well suited to shared decision-making (SDM) between the physician (health care team) and patient/relatives. Objective: The aim of this study was to perform qualitative and quantitative analyses for evaluating the outcomes and experience of SDM implementation between the physician/health care team trained for SDM and patients/their relatives for cystic fibrosis--related diabetes. Methods: A quasi-experimental with a comparison study will be developed. Three cystic fibrosis reference centers (CFRCs) will be trained in SDM by using a web-based training, including a validated decision aid and coaching for physicians and the medical team. Two control CFRCs will maintain their usual practices. A qualitative analysis through observation of consultations, individual semistructured interviews with patients, and focus groups in CFRCs will be conducted based on a thematic content analysis. Questionnaires related to decision-making and experience of decision-making with and without SDM implementation will be administered to patients and physicians. Results: Forty patients will be included (8 patients in each center), that is, 60 consultation observations (2 consultations per patient in the intervention groups given the modalities of the SDM process) will be conducted in 2025. Eight focus groups will be conducted in the 5 centers (2 groups in each intervention CFRC and 1 group in each control CFRC). This qualitative corpus plus responses to the patient and physician questionnaires will make it possible to know whether the practice of SDM in CFRCs is increased by an implementation strategy and to analyze the experience of patients and their relatives regarding decision-making modalities. Analysis of the outcomes and experience of the implementation of SDM are of importance to identify the facilitators and barriers to SDM from patients' and CFRCs' point of views. Conclusions: Our study will give us keys to adapt, improve, and disseminate SDM more widely in the context of cystic fibrosis therapy. SDM could thus be used in routine clinical practice in CFRCs at the national level. Trial Registration: ClinicalTrials.gov NCT04891159; https://clinicaltrials.gov/study/NCT04891159?id=NCT04891159 International Registered Report Identifier (IRRID): PRR1-10.2196/62931 ",
doi="10.2196/62931",
url="https://www.researchprotocols.org/2025/1/e62931"
}


@Article{info:doi/10.2196/57614,
author="Romm, Lie Kristin
and Skoge, Mari
and Barrett, Ann Elizabeth
and Berentzen, Lars-Christian
and Bergsager, Dagfinn
and Fugelli, P{\aa}l
and Bjella, Thomas
and Gardsjord, Strand Erlend
and Kling, Kristine
and Kruse, Hembre Sindre
and Kv{\ae}rner, Jorunn Kari
and Melle, Ingrid
and Mork, Erlend
and Ihler, Myhre Henrik
and Rognli, Borger Eline
and Simonsen, Carmen
and V{\ae}rnes, Gunnar Tor
and Aminoff, Ragnhild Sofie",
title="A Mobile Health Intervention to Support Collaborative Decision-Making in Mental Health Care: Development and Usability",
journal="JMIR Form Res",
year="2025",
month="Jan",
day="17",
volume="9",
pages="e57614",
keywords="eHealth",
keywords="shared decision-making",
keywords="user involvement",
keywords="user-centered design",
keywords="mental disorder",
keywords="mobile technology",
keywords="illness course",
keywords="recovery",
keywords="mobile apps",
keywords="mHealth",
abstract="Background: Shared decision-making between clinicians and service users is crucial in mental health care. One significant barrier to achieving this goal is the lack of user-centered services. Integrating digital tools into mental health services holds promise for addressing some of these challenges. However, the implementation of digital tools, such as mobile apps, remains limited, and attrition rates for mental health apps are typically high. Design thinking can support the development of tools tailored to the needs of service users and clinicians. Objective: This study aims to develop and beta test a digital tool designed for individuals with severe mental disorders or substance use disorders to facilitate shared decision-making on treatment goals and strategies within mental health services. Methods: We used a user-centered design approach to develop iTandem, an app facilitating collaborative treatment between service users and clinicians. Through qualitative interviews and workshops, we engaged 6 service users with severe mental disorders or substance use disorders, 6 clinicians, and 1 relative to identify and design relevant app modules. A beta test of iTandem was conducted to refine the app and plan for a pilot trial in a clinical setting. After 6 weeks of app use, 5 clinicians and 4 service users were interviewed to provide feedback on the concept, implementation, and technical issues. Safety and ethical considerations were thoroughly discussed and addressed. Results: To avoid overload for the service users, we applied a pragmatic take on module content and size. Thus, iTandem includes the following 8 modules, primarily based on the needs of service users and clinicians: Sleep (sleep diary), Medication (intake and side effects), Recovery (measures, including well-being and personal recovery, and exercises, including good things and personal strengths), Mood (mood diary and report of daily feelings), Psychosis (level of positive symptoms and their consequences and level of negative symptoms), Activity (goal setting and progress), Substance use (weekly use, potential triggers or strategies used to abstain), and Feedback on therapy (of individual sessions and overall rating of the past week). For the beta testing, service users and clinicians collaborated in choosing 2-3 modules in iTandem to work with during treatment sessions. The testing showed that the app was well received by service users, and that facilitation for implementation is crucial. Conclusions: iTandem and similar apps have the potential to enhance treatment outcomes by facilitating shared decision-making and tailoring treatment to the needs of service users. However, successful implementation requires thorough testing, iterative development, and evaluations of both utility and treatment effects. There is a critical need to focus on how technology integrates into clinical settings---from development to implementation---and to conduct further research on early health technology assessments to guide these processes. ",
doi="10.2196/57614",
url="https://formative.jmir.org/2025/1/e57614"
}


@Article{info:doi/10.2196/50060,
author="Ramos-Garc{\'i}a, Vanesa
and Rivero-Santana, Amado
and Pe{\~n}ate-Castro, Wenceslao
and {\'A}lvarez-P{\'e}rez, Yolanda
and Duarte-D{\'i}az, Andrea
and Torres-Casta{\~n}o, Alezandra
and Trujillo-Mart{\'i}n, Mar Mar{\'i}a del
and Gonz{\'a}lez-Gonz{\'a}lez, Isabel Ana
and Serrano-Aguilar, Pedro
and Perestelo-P{\'e}rez, Lilisbeth",
title="A Brief Web-Based Person-Centered Care Group Training Program for the Management of Generalized Anxiety Disorder: Feasibility Randomized Controlled Trial in Spain",
journal="JMIR Med Educ",
year="2025",
month="Jan",
day="16",
volume="11",
pages="e50060",
keywords="person-centered care",
keywords="primary care",
keywords="shared decision-making",
keywords="anxiety disorder",
keywords="training program",
keywords="SDM",
abstract="Background: Shared decision-making (SDM) is a crucial aspect of patient-centered care. While several SDM training programs for health care professionals have been developed, evaluation of their effectiveness is scarce, especially in mental health disorders such as generalized anxiety disorder. Objective: This study aims to assess the feasibility and impact of a brief training program on the attitudes toward SDM among primary care professionals who attend to patients with generalized anxiety disorder. Methods: A feasibility randomized controlled trial was conducted. Health care professionals recruited in primary care centers were randomized to an intervention group (training program) or a control group (waiting list). The intervention consisted of 2 web-based sessions applied by 2 psychologists (VR and YA), based on the integrated elements of the patient-centered care model and including group dynamics and video viewing. The outcome variable was the Leeds Attitudes Towards Concordance scale, second version (LATCon II), assessed at baseline and after the second session (3 months). After the randomized controlled trial phase, the control group also received the intervention and was assessed again. Results: Among 28 randomized participants, 5 withdrew before the baseline assessment. The intervention significantly increased their scores compared with the control group in the total scale (b=0.57; P=.018) and 2 subscales: communication or empathy (b=0.74; P=.036) and shared control (ie, patient participation in decisions: b=0.68; P=.040). The control group also showed significant pre-post changes after receiving the intervention. Conclusions: For a future effectiveness trial, it is necessary to improve the recruitment and retention strategies. The program produced a significant improvement in participants' attitude toward the SDM model, but due to this study's limitations, mainly the small sample size, more research is warranted. ",
doi="10.2196/50060",
url="https://mededu.jmir.org/2025/1/e50060"
}


@Article{info:doi/10.2196/65122,
author="Hendrie, A. Gilly
and Baird, L. Danielle
and James-Martin, Genevieve
and Brindal, Emily
and Brooker, G. Paige",
title="Weight Loss Patterns and Outcomes Over 12 Months on a Commercial Weight Management Program (CSIRO Total Wellbeing Diet Online): Large-Community Cohort Evaluation Study",
journal="J Med Internet Res",
year="2025",
month="Jan",
day="15",
volume="27",
pages="e65122",
keywords="obesity",
keywords="obesity management",
keywords="weight loss",
keywords="internet-based intervention, weight management",
abstract="Background: A greater understanding of the effectiveness of digital self-management programs and their ability to support longer-term weight loss is needed. Objective: This study aimed to explore the total weight loss and patterns of weight loss of CSIRO (Commonwealth Scientific and Industrial Research Organisation) Total Wellbeing Diet Online members during their first 12 months of membership and examine the patterns of platform use associated with greater weight loss. Methods: Participants were Australian adults who joined the program between October 2014 and June 2022 and were classified as longer-term members, meaning they completed at least 12 weeks of the program, had baseline and 12-week weight data, and had a paid membership of ?1 year (N=24,035). Weight loss and percentage of starting body weight loss were calculated at 3, 6, 9, and 12 months using 3 statistical approaches: (1) multiple imputations method, (2) all available data, and (3) complete data only. Among members with complete data (6602/24,035, 27.5\%), patterns of weight loss and gain were examined, and how this related to total weight loss and platform use was explored. Results: Members were mostly female (19,972/24,035, 83.09\%), aged 31 to 50 years (9986/24,035, 41.5\%) or 51 to 70 years (12,033/24,035, 50.06\%), and most members were classified as overweight or obese (23,050/24,035, 95.9\%). Using multiple imputations, the average estimated weight loss was 5.9 (SE 0.0245) kg at 12 weeks, 6.7 (SE 0.0348) kg at 6 months, 6.2 (SE 0.0400) kg at 9 months, and 5.5 (SE 0.0421) kg at 12 months. At 12 months, more than half the members (12,573/24,035, 52.3\%) were at least 5\% below their starting body weight and 1 in 4 (5865/24,035, 24.4\%) were at least 10\% below their starting body weight. In the subsample with complete data, the average weight loss at 12 months was 7.8 kg. The most common (961/6602, 14.56\% members) weight loss pattern over the first 12 months was 6 months of weight loss, followed by 6 months of weight maintenance. This group had an average weight loss of 10.6 kg at 12 months (11.9\% of their starting body weight). In a subgroup of participants who consistently lost weight over the 12-month period (284/6602, 4.3\% of the sample), weight loss reached up to 22.3 kg (21.7\% of their starting body weight). Weekly platform use was positively associated with total weight loss (r=0.287; P<.001). Members who used the platform >30 times per week (approximately >4 times/d) were more likely to lose weight in the first 6 months of the program. Conclusions: This commercial weight loss program was shown to be effective, with 1 in 2 members achieving clinically significant results after 1 year. Greater engagement with the platform was associated with consecutive periods of weight loss and greater weight loss success overall. ",
doi="10.2196/65122",
url="https://www.jmir.org/2025/1/e65122"
}


@Article{info:doi/10.2196/60443,
author="van den Broek-Altenburg, M. Eline
and Atherly, J. Adam",
title="The Paradigm Shift From Patient to Health Consumer: 20 Years of Value Assessment in Health",
journal="J Med Internet Res",
year="2025",
month="Jan",
day="10",
volume="27",
pages="e60443",
keywords="value assessment",
keywords="cost-effectiveness",
keywords="quality-adjusted life-years",
keywords="QALY",
keywords="health consumer",
keywords="health technology",
keywords="value based",
keywords="digital health",
keywords="patient centered",
keywords="preferences",
keywords="health economics",
doi="10.2196/60443",
url="https://www.jmir.org/2025/1/e60443",
url="http://www.ncbi.nlm.nih.gov/pubmed/39793021"
}


@Article{info:doi/10.2196/57528,
author="Davis, Alexis
and Martin, Joshua
and Cooks, Eric
and Vilaro, Melissa
and Wilson-Howard, Danyell
and Tang, Kevin
and Raup Krieger, Janice",
title="From English to ``Englishes'': A Process Perspective on Enhancing the Linguistic Responsiveness of Culturally Tailored Cancer Prevention Interventions",
journal="J Particip Med",
year="2024",
month="Dec",
day="19",
volume="16",
pages="e57528",
keywords="behavior change",
keywords="community-engaged research",
keywords="cancer screening",
keywords="colorectal cancers",
keywords="communication",
keywords="communication accommodation",
keywords="linguistics",
doi="10.2196/57528",
url="https://jopm.jmir.org/2024/1/e57528"
}


@Article{info:doi/10.2196/64439,
author="Pathak, Yuvraj
and Muhlestein, David",
title="Public Awareness and Use of Price Transparency: Report From a National Survey",
journal="Interact J Med Res",
year="2024",
month="Dec",
day="12",
volume="13",
pages="e64439",
keywords="price transparency",
keywords="consumer choice",
keywords="survey",
keywords="questionnaire",
keywords="finance",
keywords="cost",
keywords="economics",
keywords="price",
keywords="pricing",
keywords="consumer",
keywords="transparent",
keywords="Medicare",
keywords="Medicaid",
keywords="insurance",
doi="10.2196/64439",
url="https://www.i-jmr.org/2024/1/e64439"
}


@Article{info:doi/10.2196/57312,
author="Harakeh, Zeena
and de Hoogh, Iris
and Krijger-Dijkema, Anne-Margreeth
and Berb{\'e}e, Susanne
and Kalkman, Gino
and van Empelen, Pepijn
and Otten, Wilma",
title="A 360{\textdegree} Approach to Personalize Lifestyle Treatment in Primary Care for People With Type 2 Diabetes: Feasibility Study",
journal="JMIR Form Res",
year="2024",
month="Dec",
day="4",
volume="8",
pages="e57312",
keywords="type 2 diabetes",
keywords="diagnostic tool",
keywords="holistic approach",
keywords="personalized treatment",
keywords="shared decision-making",
keywords="health professionals",
keywords="intervention",
keywords="feasibility study",
keywords="primary care",
abstract="Background: Given the multifactorial nature of type 2 diabetes (T2D), health care for this condition would benefit from a holistic approach and multidisciplinary consultation. To address this, we developed the web-based 360-degree (360{\textdegree}) diagnostic tool, which assesses 4 key domains: ``body'' (physical health parameters), ``thinking and feeling'' (eg, mental health and stress), ``behavior'' (lifestyle factors), and ``environment'' (eg, work and housing conditions). Objective: This work examines the acceptability, implementation, and potential effects of the 360{\textdegree} diagnostic tool and subsequent tailored treatment (360{\textdegree} approach) in a 6-month intervention and feasibility study conducted in standard primary health care settings in the Netherlands. Methods: A single-group design with baseline, 3-month, and 6-month follow-ups was used. A total of 15 people with T2D and their health care providers from 2 practices participated in a 6-month intervention, which included the 360{\textdegree} diagnosis, tailored treatment, and both individual and group consultations. The 360{\textdegree} diagnosis involved clinical measurements for the ``body'' domain and self-reports for the ``thinking and feeling,'' ``behavior,'' and ``environment'' domains. After multidisciplinary consultations involving the general practitioner, pharmacist, nurse practitioner (NP), and dietitian, the NP and dietitian provided tailored advice, lifestyle treatment, and ongoing support. At the end of the intervention, face-to-face semistructured interviews were conducted with health care professionals (n=6) and participants (n=13) to assess the acceptability and implementation of the 360{\textdegree} approach in primary health care. Additionally, data from 14 participants on the ``thinking and feeling'' and ``behavior'' domains at baseline, 3 months, and 6 months were analyzed to assess changes over time. Results: The semistructured interviews revealed that both participants with T2D and health care professionals were generally positive about various aspects of the 360{\textdegree} approach, including onboarding, data collection with the 360{\textdegree} diagnosis, consultations and advice from the NP and dietitian, the visual representation of parameters in the profile wheel, counseling during the intervention (including professional collaboration), and the group meetings. The interviews also identified factors that promoted or hindered the implementation of the 360{\textdegree} approach. Promoting factors included (1) the care, attention, support, and experience of professionals; (2) the multidisciplinary team; (3) social support; and (4) the experience of positive health effects. Hindering factors included (1) too much information, (2) survey-related issues, and (3) time-consuming counseling. In terms of effects over time, improvements were observed at 3 months in mental health, diabetes-related problems, and fast-food consumption. At 6 months, there was a reduction in perceived stress and fast-food consumption. Additionally, fruit intake decreased at both 3 and 6 months. Conclusions: Our findings suggest that the 360{\textdegree} approach is acceptable to both people with T2D and health care professionals, implementable, and potentially effective in fostering positive health changes. Overall, it appears feasible to implement the 360{\textdegree} approach in standard primary health care. Trial Registration: Netherlands Trial Register NL-7509/NL-OMON45788; https://onderzoekmetmensen.nl/nl/trial/45788 ",
doi="10.2196/57312",
url="https://formative.jmir.org/2024/1/e57312"
}


@Article{info:doi/10.2196/64593,
author="Oliveira, Almeida Juliana
and Eskandar, Karine
and Kar, Emre
and de Oliveira, Ribeiro Fl{\'a}via
and Filho, Silva Agnaldo Lopes da",
title="Understanding AI's Role in Endometriosis Patient Education and Evaluating Its Information and Accuracy: Systematic Review",
journal="JMIR AI",
year="2024",
month="Oct",
day="30",
volume="3",
pages="e64593",
keywords="endometriosis",
keywords="gynecology",
keywords="machine learning",
keywords="artificial intelligence",
keywords="large language models",
keywords="natural language processing",
keywords="patient-generated health data",
keywords="health knowledge",
keywords="information seeking",
keywords="patient education",
abstract="Background: Endometriosis is a chronic gynecological condition that affects a significant portion of women of reproductive age, leading to debilitating symptoms such as chronic pelvic pain and infertility. Despite advancements in diagnosis and management, patient education remains a critical challenge. With the rapid growth of digital platforms, artificial intelligence (AI) has emerged as a potential tool to enhance patient education and access to information. Objective: This systematic review aims to explore the role of AI in facilitating education and improving information accessibility for individuals with endometriosis. Methods: This review followed the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines to ensure rigorous and transparent reporting. We conducted a comprehensive search of PubMed; Embase; the Regional Online Information System for Scientific Journals of Latin America, the Caribbean, Spain and Portugal (LATINDEX); Latin American and Caribbean Literature in Health Sciences (LILACS); Institute of Electrical and Electronics Engineers (IEEE) Xplore, and the Cochrane Central Register of Controlled Trials using the terms ``endometriosis'' and ``artificial intelligence.'' Studies were selected based on their focus on AI applications in patient education or information dissemination regarding endometriosis. We included studies that evaluated AI-driven tools for assessing patient knowledge and addressed frequently asked questions related to endometriosis. Data extraction and quality assessment were conducted independently by 2 authors, with discrepancies resolved through consensus. Results: Out of 400 initial search results, 11 studies met the inclusion criteria and were fully reviewed. We ultimately included 3 studies, 1 of which was an abstract. The studies examined the use of AI models, such as ChatGPT (OpenAI), machine learning, and natural language processing, in providing educational resources and answering common questions about endometriosis. The findings indicated that AI tools, particularly large language models, offer accurate responses to frequently asked questions with varying degrees of sufficiency across different categories. AI's integration with social media platforms also highlights its potential to identify patients' needs and enhance information dissemination. Conclusions: AI holds promise in advancing patient education and information access for endometriosis, providing accurate and comprehensive answers to common queries, and facilitating a better understanding of the condition. However, challenges remain in ensuring ethical use, equitable access, and maintaining accuracy across diverse patient populations. Future research should focus on developing standardized approaches for evaluating AI's impact on patient education and exploring its integration into clinical practice to enhance support for individuals with endometriosis. ",
doi="10.2196/64593",
url="https://ai.jmir.org/2024/1/e64593"
}


@Article{info:doi/10.2196/62691,
author="Fiordelli, Maddalena",
title="Transitioning Perspectives in Digital Health Through Phenomenology Integration",
journal="J Med Internet Res",
year="2024",
month="Oct",
day="23",
volume="26",
pages="e62691",
keywords="eHealth",
keywords="digital health",
keywords="phenomenology",
keywords="phenomenological",
keywords="participatory",
keywords="health communication",
keywords="health information",
keywords="active listening",
keywords="lived experience",
doi="10.2196/62691",
url="https://www.jmir.org/2024/1/e62691"
}


@Article{info:doi/10.2196/57062,
author="Dougherty, Madeline
and Tompkins, Tamara
and Zibrowski, Elaine
and Cram, Jesse
and Ashe, C. Maureen
and Bhaskar, Le-Tien
and Card, George Kiffer
and Godfrey, Christina
and Hebert, Paul
and Lacombe, Ron
and Muhl, Caitlin
and Mulligan, Kate
and Mulvale, Gillian
and Nelson, A. Michelle L.
and Norman, Myrna
and Symes, Bobbi
and Teare, Gary
and Welch, Vivian
and Kothari, Anita",
title="Coproduction in Social Prescribing Initiatives: Protocol for a Scoping Review",
journal="JMIR Res Protoc",
year="2024",
month="Oct",
day="17",
volume="13",
pages="e57062",
keywords="social prescribing",
keywords="coproduction",
keywords="codevelopment",
keywords="policy",
keywords="social prescription",
keywords="nonmedical need",
keywords="social need",
keywords="clinical setting",
keywords="community programs",
keywords="health care system",
keywords="pilot-tested",
keywords="user involvement",
keywords="health education",
abstract="Background: Social prescribing (SP) takes a holistic approach to health by linking clients from clinical settings to community programs to address their nonmedical needs. The emerging evidence base for SP demonstrates variability in the design and implementation of different SP initiatives. To effectively address these needs, coproduction among clients, communities, stakeholders, and policy makers is important for tailoring SP initiatives for optimal uptake. Objective: This study aims to explore the role of coproduction in SP initiatives. The research question is as follows: How and for what purpose has coproduction been incorporated across a range of SP initiatives for different clients? Methods: A review of international literature will be conducted following the JBI guidelines for scoping reviews. We will search multiple databases including Scopus, MEDLINE, and the PAIS Index, as well as gray literature, from 2000 to 2023. The primary studies included will describe a nonmedical need for clients, a nonmedical SP program or initiative, coproduction of the SP program, and any follow-up. Review articles and commentaries will be excluded. Titles, abstracts, and full-text articles will be screened, and data will be extracted by at least 2 research team members using Covidence and a pilot-tested extraction template. Clients with lived experience will also participate in the research process. Findings will be descriptively summarized and thematically synthesized to answer the research question. Results: The project was funded in 2023, and the results are expected to be submitted for publication in early 2025. Conclusions: Descriptions of what coproduction is meant to accomplish may differ from theoretical aspirations. Continued understanding of how coproduction has been designed and executed across varied international SP models is important for framing engagement in practice for future SP arrangements and their evaluation. We anticipate this review will guide clients, communities, stakeholders, and policy makers in further developing SP practice within health care systems. Trial Registration: Open Science Framework Registries B8U4Z; https://osf.io/b8u4z International Registered Report Identifier (IRRID): DERR1-10.2196/57062 ",
doi="10.2196/57062",
url="https://www.researchprotocols.org/2024/1/e57062"
}


@Article{info:doi/10.2196/58845,
author="Boege, Selina
and Milne-Ives, Madison
and Meinert, Edward
and Carroll, Camille",
title="Self-Management Systems for Patients and Clinicians in Parkinson Care: Protocol for an Integrated Scoping Review, Product Search, and Evaluation",
journal="JMIR Res Protoc",
year="2024",
month="Sep",
day="24",
volume="13",
pages="e58845",
keywords="Parkinson's disease",
keywords="digital health",
keywords="self-management",
keywords="health care systems",
keywords="self-care",
keywords="Parkinson",
keywords="mobile health",
keywords="mHeath",
keywords="evaluation",
keywords="acceptability",
keywords="usability",
keywords="decision-making support",
keywords="database",
keywords="qualitative",
keywords="quantitative",
keywords="mixed method",
keywords="perception",
abstract="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 ",
doi="10.2196/58845",
url="https://www.researchprotocols.org/2024/1/e58845"
}


@Article{info:doi/10.2196/56935,
author="McLoughlin, E. Daniel
and Moreno Echevarria, M. Fabiola
and Badawy, M. Sherif",
title="Lessons Learned From Shared Decision-Making With Oral Anticoagulants: Viewpoint on Suggestions for the Development of Oral Chemotherapy Decision Aids",
journal="JMIR Cancer",
year="2024",
month="Sep",
day="11",
volume="10",
pages="e56935",
keywords="shared decision-making",
keywords="SDM",
keywords="decision aids",
keywords="decision aids design",
keywords="oral chemotherapy",
keywords="oral anticoagulants",
keywords="drug delivery",
keywords="chemotherapy",
keywords="chemo",
keywords="anticoagulants",
keywords="drug deliveries",
keywords="cancer",
keywords="oncology",
keywords="oncologist",
keywords="metastases",
keywords="literature review",
keywords="literature reviews",
doi="10.2196/56935",
url="https://cancer.jmir.org/2024/1/e56935",
url="http://www.ncbi.nlm.nih.gov/pubmed/39187430"
}


@Article{info:doi/10.2196/55852,
author="Pohl, Petra
and Klerfors, Karoline
and Kj{\"o}rk, K. Emma",
title="Evaluation of a Digital Previsit Tool for Identifying Stroke-Related Health Problems Before a Follow-Up Visit (Part 1): Survey Study",
journal="JMIR Hum Factors",
year="2024",
month="Sep",
day="3",
volume="11",
pages="e55852",
keywords="e-health",
keywords="stroke",
keywords="Strokeh{\"a}lsa",
keywords="follow-up",
keywords="previsit",
keywords="person-centred care",
keywords="health literacy",
keywords="digital tool",
keywords="shared decision-making",
keywords="survey",
keywords="mobile phone",
abstract="Background: Stroke may lead to various disabilities, and a structured follow-up visit is strongly recommended within a few months after an event. To facilitate this visit, the digital previsit tool ``Strokehealth'' was developed for patients to fill out in advance. The concept Strokeh{\"a}lsa (or Strokehealth) was initially developed in-house as a Windows application, later incorporated in 1177.se. Objective: The study's primary objective was to use a patient satisfaction survey to evaluate the digital previsit tool Strokehealth when used before a follow-up visit, with a focus on feasibility and relevance from the perspective of people with stroke. Our secondary objective was to explore the extent to which the previsit tool identified stroke-related health problems. Methods: Between November 2020 and June 2021, a web-based survey was sent to patients who were scheduled for a follow-up visit after discharge from a stroke unit and had recently filled in the previsit tool. The survey covered demographic characteristics, internet habits, and satisfaction rated using 5 response options. Descriptive statistics were used to present data from both the previsit tool and the survey. We also compared the characteristics of those who completed the previsit tool and those who did not, using nonparametric statistics. Free-text responses were thematically analyzed. Results: All patients filling out the previsit tool (80/171; age: median 67, range 32-91 years) were community-dwelling. Most had experienced a mild stroke and reported a median of 2 stroke-related health problems (range 0-8), and they were significantly younger than nonresponders (P<.001). The survey evaluating the previsit tool was completed by 73\% (58/80; 39 men). The majority (48/58, 83\%) reported using the internet daily. Most respondents (56/58, 97\%) were either satisfied (n=15) or very satisfied (n=41) with how well the previsit tool captured their health problems. The highest level of dissatisfaction was related to the response options in Strokehealth (n=5). Based on the free-text answers to the survey, we developed 4 themes. First, Strokehealth was perceived to provide a structure that ensured that issues would be emphasized and considered. Second, user-friendliness and accessibility were viewed as acceptable, although respondents suggested improvements. Third, participants raised awareness about being approached digitally for communication and highlighted the importance of how to be approached. Fourth, their experiences with Strokehealth were influenced by their perceptions of the explanatory texts, the response options, and the possibility of elaborating on their answers in free text. Conclusions: People with stroke considered the freely available previsit tool Strokehealth feasible for preparing in advance for a follow-up visit. Despite high satisfaction with how well the tool captured their health problems, participants indicated that additional free-text responses and revised information could enhance usability. Improvements need to be considered in parallel with qualitative data to ensure that the tool meets patient needs. Trial Registration: Researchweb 275135; https://www.researchweb.org/is/vgr/project/275135 ",
doi="10.2196/55852",
url="https://humanfactors.jmir.org/2024/1/e55852"
}


@Article{info:doi/10.2196/59952,
author="Hawkins, T. Alexander
and Fa, Andrea
and Younan, A. Samuel
and Ivatury, Joga Srinivas
and Bonnet, Kemberlee
and Schlundt, David
and Gordon, J. Elisa
and Cavanaugh, L. Kerri",
title="Decision Aid for Colectomy in Recurrent Diverticulitis: Development and Usability Study",
journal="JMIR Form Res",
year="2024",
month="Sep",
day="3",
volume="8",
pages="e59952",
keywords="design sprint",
keywords="diverticulitis",
keywords="decision aid",
keywords="shared decision-making",
keywords="colectomy",
keywords="decision-making",
keywords="diverticular diseases",
keywords="gastrointestinal diagnosis",
keywords="American",
keywords="America",
keywords="tools",
keywords="tool",
keywords="effectiveness",
keywords="surgeon",
keywords="patients",
keywords="patient",
keywords="communication",
keywords="synopsis",
abstract="Background: Diverticular disease is a common gastrointestinal diagnosis with over 2.7 million clinic visits yearly. National guidelines from the American Society of Colon and Rectal Surgeons state that ``the decision to recommend elective sigmoid colectomy after recovery from uncomplicated acute diverticulitis should be individualized.'' However, tools to individualize this decision are lacking. Objective: This study aimed to develop an online educational decision aid (DA) to facilitate effective surgeon and patient communication about treatment options for recurrent left-sided diverticulitis. Methods: We used a modified design sprint methodology to create a prototype DA. We engaged a multidisciplinary team and adapted elements from the Ottawa Personal Decision Guide. We then iteratively refined the prototype by conducting a mixed methods assessment of content and usability testing, involving cognitive interviews with patients and surgeons. The findings informed the refinement of the DA. Further testing included an in-clinic feasibility review. Results: Over a 4-day in-person rapid design sprint, including patients, surgeons, and health communication experts, we developed a prototype of a diverticulitis DA, comprising an interactive website and handout with 3 discrete sections. The first section contains education about diverticulitis and treatment options. The second section clarifies the potential risks and benefits of both clinical treatment options (medical management vs colectomy). The third section invites patients to participate in a value clarification exercise. After navigating the DA, the patient prints a synopsis that they bring to their clinic appointment, which serves as a guide for shared decision-making. Conclusions: Design sprint methodology, emphasizing stakeholder co-design and complemented by extensive user testing, is an effective and efficient strategy to create a DA for patients living with recurrent diverticulitis facing critical treatment decisions. ",
doi="10.2196/59952",
url="https://formative.jmir.org/2024/1/e59952",
url="http://www.ncbi.nlm.nih.gov/pubmed/39226090"
}


@Article{info:doi/10.2196/53993,
author="van der Mee, M. Frederieke A.
and Schaper, Fleur
and Jansen, Jesse
and Bons, P. Judith A.
and Meex, R. Steven J.
and Cals, L. Jochen W.",
title="Enhancing Patient Understanding of Laboratory Test Results: Systematic Review of Presentation Formats and Their Impact on Perception, Decision, Action, and Memory",
journal="J Med Internet Res",
year="2024",
month="Aug",
day="12",
volume="26",
pages="e53993",
keywords="electronic health record",
keywords="patient access to records",
keywords="patient portal",
keywords="laboratory test results",
keywords="clinical laboratory information systems",
keywords="health communication",
keywords="health informatics",
keywords="patient engagement",
keywords="patient involvement",
abstract="Background: Direct access of patients to their web-based patient portal, including laboratory test results, has become increasingly common. Numeric laboratory results can be challenging to interpret for patients, which may lead to anxiety, confusion, and unnecessary doctor consultations. Laboratory results can be presented in different formats, but there is limited evidence regarding how these presentation formats impact patients' processing of the information. Objective: This study aims to synthesize the evidence on effective formats for presenting numeric laboratory test results with a focus on outcomes related to patients' information processing, including affective perception, perceived magnitude, cognitive perception, perception of communication, decision, action, and memory. Methods: The search was conducted in 3 databases (PubMed, Web of Science, and Embase) from inception until May 31, 2023. We included quantitative, qualitative, and mixed methods articles describing or comparing formats for presenting diagnostic laboratory test results to patients. Two reviewers independently extracted and synthesized the characteristics of the articles and presentation formats used. The quality of the included articles was assessed by 2 independent reviewers using the Mixed Methods Appraisal Tool. Results: A total of 18 studies were included, which were heterogeneous in terms of study design and primary outcomes used. The quality of the articles ranged from poor to excellent. Most studies (n=16, 89\%) used mock test results. The most frequently used presentation formats were numerical values with reference ranges (n=12), horizontal line bars with colored blocks (n=12), or a combination of horizontal line bars with numerical values (n=8). All studies examined perception as an outcome, while action and memory were studied in 1 and 3 articles, respectively. In general, participants' satisfaction and usability were the highest when test results were presented using horizontal line bars with colored blocks. Adding reference ranges or personalized information (eg, goal ranges) further increased participants' perception. Additionally, horizontal line bars significantly decreased participants' tendency to search for information or to contact their physician, compared with numerical values with reference ranges. Conclusions: In this review, we synthesized available evidence on effective presentation formats for laboratory test results. The use of horizontal line bars with reference ranges or personalized goal ranges increased participants' cognitive perception and perception of communication while decreasing participants' tendency to contact their physicians. Action and memory were less frequently studied, so no conclusion could be drawn about a single preferred format regarding these outcomes. Therefore, the use of horizontal line bars with reference ranges or personalized goal ranges is recommended to enhance patients' information processing of laboratory test results. Further research should focus on real-life settings and diverse presentation formats in combination with outcomes related to patients' information processing. ",
doi="10.2196/53993",
url="https://www.jmir.org/2024/1/e53993"
}


@Article{info:doi/10.2196/52310,
author="Angonese, Giulia
and Buhl, Mareike
and Kuhlmann, Inka
and Kollmeier, Birger
and Hildebrandt, Andrea",
title="Prediction of Hearing Help Seeking to Design a Recommendation Module of an mHealth Hearing App: Intensive Longitudinal Study of Feature Importance Assessment",
journal="JMIR Hum Factors",
year="2024",
month="Aug",
day="12",
volume="11",
pages="e52310",
keywords="hearing loss",
keywords="mobile health",
keywords="mHealth",
keywords="older adults",
keywords="help seeking",
keywords="mobile study",
keywords="machine learning",
keywords="supervised classification",
keywords="feature importance",
keywords="profiling",
keywords="mobile phone",
abstract="Background: Mobile health (mHealth) solutions can improve the quality, accessibility, and equity of health services, fostering early rehabilitation. For individuals with hearing loss, mHealth apps might be designed to support the decision-making processes in auditory diagnostics and provide treatment recommendations to the user (eg, hearing aid need). For some individuals, such an mHealth app might be the first contact with a hearing diagnostic service and should motivate users with hearing loss to seek professional help in a targeted manner. However, personalizing treatment recommendations is only possible by knowing the individual's profile regarding the outcome of interest. Objective: This study aims to characterize individuals who are more or less prone to seeking professional help after the repeated use of an app-based hearing test. The goal was to derive relevant hearing-related traits and personality characteristics for personalized treatment recommendations for users of mHealth hearing solutions. Methods: In total, 185 (n=106, 57.3\% female) nonaided older individuals (mean age 63.8, SD 6.6 y) with subjective hearing loss participated in a mobile study. We collected cross-sectional and longitudinal data on a comprehensive set of 83 hearing-related and psychological measures among those previously found to predict hearing help seeking. Readiness to seek help was assessed as the outcome variable at study end and after 2 months. Participants were classified into help seekers and nonseekers using several supervised machine learning algorithms (random forest, na{\"i}ve Bayes, and support vector machine). The most relevant features for prediction were identified using feature importance analysis. Results: The algorithms correctly predicted action to seek help at study end in 65.9\% (122/185) to 70.3\% (130/185) of cases, reaching 74.8\% (98/131) classification accuracy at follow-up. Among the most important features for classification beyond hearing performance were the perceived consequences of hearing loss in daily life, attitude toward hearing aids, motivation to seek help, physical health, sensory sensitivity personality trait, neuroticism, and income. Conclusions: This study contributes to the identification of individual characteristics that predict help seeking in older individuals with self-reported hearing loss. Suggestions are made for their implementation in an individual-profiling algorithm and for deriving targeted recommendations in mHealth hearing apps. ",
doi="10.2196/52310",
url="https://humanfactors.jmir.org/2024/1/e52310",
url="http://www.ncbi.nlm.nih.gov/pubmed/39133539"
}


@Article{info:doi/10.2196/56996,
author="Elf, Marie
and Norin, Lizette
and Meijering, Louise
and Pessah-Rasmussen, H{\'e}l{\`e}ne
and Suhonen, Riitta
and Zingmark, Magnus
and Kyl{\'e}n, Maya",
title="Rehabilitation at Home With the Development of a Sustainable Model Placing the Person's Needs and Environment at Heart: Protocol for a Multimethod Project",
journal="JMIR Res Protoc",
year="2024",
month="Jul",
day="23",
volume="13",
pages="e56996",
keywords="co-design",
keywords="early supported discharge",
keywords="home",
keywords="integrated care",
keywords="life space mobility",
keywords="multi-methods",
keywords="physical environment",
keywords="person-centered care",
keywords="social environment",
keywords="stroke rehabilitation",
abstract="Background: Each year, more than 1.5 million people in Europe have a stroke, and many experience disabilities leading to activity and participation restrictions. Home-based rehabilitation is the recommended approach for stroke rehabilitation, in line with the international shift to integrated care. Despite this, rehabilitation often focuses on the person's physical functions, not the whole life situation and opportunities to live an active life. Given that rehabilitation today is often provided in the person's home, there is a need to develop new models that consider the rehabilitation process as situated in the everyday living environment of persons with stroke. This project is grounded in experiences from our ongoing research, where we study the importance of the home environment for health and participation among persons with stroke, rehabilitated at home. This research has shown unmet needs, which lead to suboptimal rehabilitation outcomes. There is a need for studies on how to use environmental resources to optimize stroke rehabilitation in the home setting. Objective: The overarching objective of the project is to develop a new practice model for rehabilitation where the needs of the person are the starting point and where the environment is considered. Methods: The project will be conducted in partnership with persons with stroke, significant others, health care professionals, and care managers. Results from a literature review will form the base for interviews with the stakeholders, followed by co-designing workshops aiming to create a new practice model. Focus groups will be held to refine the outcome of the workshops to a practice model. Results: This 4-year project commenced in January 2023 and will continue until December 2026. The results of the literature review are, as of April 2024, currently being analyzed. The ethics application for the interviews and co-design phase was approved in October 2023 and data collection is ongoing during spring 2024. We aim to develop a practice model with stakeholders and refine it together with care managers and decision makers. The outcome is a new practice model and implementation plan, which will be achieved in autumn 2026. Conclusions: The project contributes with a prominent missing puzzle to optimize the rehabilitation process by adding a strong focus on user engagement combined with integrating different aspects of the environment. The goal is to improve quality of life and increase reintegration in society for the large group of people living with the aftermath of a stroke. By co-designing with multiple stakeholders, we expect the model to be feasible and sustainable. The knowledge from the project will also contribute to an increased awareness of the importance of the physical environment for sustainable health care. The findings will lay the foundation for future upscaling initiatives. International Registered Report Identifier (IRRID): DERR1-10.2196/56996 ",
doi="10.2196/56996",
url="https://www.researchprotocols.org/2024/1/e56996"
}


@Article{info:doi/10.2196/47785,
author="Ortiz, Fernanda
and Grasberger, Juulia
and Ekstrand, Agneta
and Helanter{\"a}, Ilkka
and Giunti, Guido",
title="Interactive Health Technology Tool for Kidney Living Donor Assessment to Standardize the Informed Consent Process: Usability and Qualitative Content Analysis",
journal="JMIR Form Res",
year="2024",
month="Jul",
day="9",
volume="8",
pages="e47785",
keywords="eHealth",
keywords="kidney living donor",
keywords="informed consent",
keywords="telemedicine",
keywords="process standardization",
keywords="kidney",
keywords="donor",
keywords="tool",
keywords="usability",
keywords="psychological impact",
keywords="utility",
keywords="smartphone",
keywords="coping",
keywords="surgery",
abstract="Background: Kidney living donation carries risks, yet standardized information provision regarding nephrectomy risks and psychological impacts for candidates remains lacking. Objective: This study assesses the benefit of interactive health technology in improving the informed consent process for kidney living donation. Methods: The Kidney Hub institutional open portal offers comprehensive information on kidney disease and donation. Individuals willing to start the kidney living donation process at Helsinki University Hospital (January 2019-January 2022) were invited to use the patient-tailored digital care path (Living Donor Digital Care Path) included in the Kidney Hub. This platform provides detailed donation process information and facilitates communication between health care professionals and patients. eHealth literacy was evaluated via the eHealth Literacy Scale (eHEALS), usability with the System Usability Scale (SUS), and system utility through Likert-scale surveys with scores of 1-5. Qualitative content analysis addressed an open-ended question. Results: The Kidney Hub portal received over 8000 monthly visits, including to its sections on donation benefits (n=1629 views) and impact on donors' lives (n=4850 views). Of 127 living kidney donation candidates, 7 did not use Living Donor Digital Care Path. Users' ages ranged from 20 to 79 years, and they exchanged over 3500 messages. A total of 74 living donor candidates participated in the survey. Female candidates more commonly searched the internet about kidney donation (n=79 female candidates vs n=48 male candidates; P=.04). The mean eHEALS score correlated with internet use for health decisions (r=0.45; P<.001) and its importance (r=0.40; P=.01). Participants found that the Living Donor Digital Care Path was technically satisfactory (mean SUS score 4.4, SD 0.54) and useful but not pivotal in donation decision-making. Concerns focused on postsurgery coping for donors and recipients. Conclusions: Telemedicine effectively educates living kidney donor candidates on the donation process. The Living Donor Digital Care Path serves as a valuable eHealth tool, aiding clinicians in standardizing steps toward informed consent. Trial Registration: ClinicalTrials.gov NCT04791670; https://clinicaltrials.gov/study/NCT04791670 International Registered Report Identifier (IRRID): RR2-10.1136/bmjopen-2021-051166 ",
doi="10.2196/47785",
url="https://formative.jmir.org/2024/1/e47785"
}


@Article{info:doi/10.2196/49608,
author="Ng, Reuben
and Indran, Nicole
and Liu, Luyao",
title="Advocating for Older Adults in the Age of Social Media: Strategies to Achieve Peak Engagement on Twitter",
journal="JMIR Aging",
year="2024",
month="May",
day="1",
volume="7",
pages="e49608",
keywords="age advocacy",
keywords="social media engagement",
keywords="older adults",
keywords="ageism",
keywords="data science",
abstract="Background: Over the last decade, many organizations dedicated to serving the needs and interests of older adults have turned to social media platforms, such as Twitter, subsequently rebranded X, to improve the visibility of age-related issues. However, notwithstanding their growing digital presence and participation, minimal attention has been paid to the use of social media among these advocacy groups. To achieve policy change, advocacy organizations must first be able to engage and mobilize audiences. Objective: Our study aims to elucidate how different tweet features affect the time it takes for posts uploaded by age advocacy organizations to reach peak engagement. Methods: We collated 204,905 tweets from 53 age advocacy organizations posted over a 12-year period. The engagement score of each tweet was calculated by combining well-established metrics, namely likes, retweets, quote tweets, and replies. We ran Cox models with tweet features as predictors and time-to-peak engagement as the outcome. ``Peak engagement'' (event) refers to engagement scores above the 75th percentile, and ``time'' refers to months taken to reach peak engagement per tweet. Results: Approximately 1 in 2 tweets (n=103,068, 50.3\%) had either no hashtags or just 1 hashtag. Around two-thirds (n=131,220, 64\%) of the tweets included a URL. Visual information was highly underused, with most tweets not including GIFs (n=204,202, 99.7\%), videos (n=199,800, 97.5\%), or photos (n=143,844, 70.2\%). Roughly half (n=101,470, 49.5\%) of the tweets contained mentions and 9.3\% (n=19,009) of tweets were replies. Only 4.5\% (n=9285) of tweets were quote tweets. Most tweets were uploaded in the afternoon (n=86,004, 42\%) and on a weekday (n=180,499, 88.1\%). As hypothesized, features associated with peak engagement were the inclusion of visual elements like photos, which increased peak engagement by 3 times (P<.001), and the use of 3 or more hashtags (P<.001). Quote tweets increased engagement by 3 times (P<.001), as compared to regular tweets, controlling for account-level covariates. Tweets from organizations with a higher tweet volume were 40\% less likely to reach peak engagement (P<.001). Conclusions: Social media as a networked platform has the potential to reach users on a global scale and at an exponential speed. Having uncovered the features that are more likely to reach peak engagement on Twitter, our study serves as an invaluable resource for age advocacy organizations in their movement to create a more age-inclusive world. ",
doi="10.2196/49608",
url="https://aging.jmir.org/2024/1/e49608"
}


@Article{info:doi/10.2196/47484,
author="Benda, Natalie
and Woode, Sydney
and Ni{\~n}o de Rivera, Stephanie
and Kalish, B. Robin
and Riley, E. Laura
and Hermann, Alison
and Masterson Creber, Ruth
and Costa Pimentel, Eric
and Ancker, S. Jessica",
title="Understanding Symptom Self-Monitoring Needs Among Postpartum Black Patients: Qualitative Interview Study",
journal="J Med Internet Res",
year="2024",
month="Apr",
day="26",
volume="26",
pages="e47484",
keywords="maternal mortality",
keywords="patient-reported outcomes",
keywords="patient-reported outcome",
keywords="health equity",
keywords="qualitative research",
keywords="mobile health",
keywords="mHealth",
keywords="qualitative",
keywords="postpartum",
keywords="postnatal",
keywords="maternity",
keywords="maternal",
keywords="Black",
keywords="women's health",
keywords="ethnic",
keywords="design need",
keywords="mortality",
keywords="death",
keywords="decision support",
keywords="information need",
keywords="informational need",
keywords="obstetric",
keywords="obstetrics",
keywords="mental health",
keywords="mobile phone",
abstract="Background: Pregnancy-related death is on the rise in the United States, and there are significant disparities in outcomes for Black patients. Most solutions that address pregnancy-related death are hospital based, which rely on patients recognizing symptoms and seeking care from a health system, an area where many Black patients have reported experiencing bias. There is a need for patient-centered solutions that support and encourage postpartum people to seek care for severe symptoms. Objective: We aimed to determine the design needs for a mobile health (mHealth) patient-reported outcomes and decision-support system to assist Black patients in assessing when to seek medical care for severe postpartum symptoms. These findings may also support different perinatal populations and minoritized groups in other clinical settings. Methods: We conducted semistructured interviews with 36 participants---15 (42\%) obstetric health professionals, 10 (28\%) mental health professionals, and 11 (31\%) postpartum Black patients. The interview questions included the following: current practices for symptom monitoring, barriers to and facilitators of effective monitoring, and design requirements for an mHealth system that supports monitoring for severe symptoms. Interviews were audio recorded and transcribed. We analyzed transcripts using directed content analysis and the constant comparative process. We adopted a thematic analysis approach, eliciting themes deductively using conceptual frameworks from health behavior and human information processing, while also allowing new themes to inductively arise from the data. Our team involved multiple coders to promote reliability through a consensus process. Results: Our findings revealed considerations related to relevant symptom inputs for postpartum support, the drivers that may affect symptom processing, and the design needs for symptom self-monitoring and patient decision-support interventions. First, participants viewed both somatic and psychological symptom inputs as important to capture. Second, self-perception; previous experience; sociocultural, financial, environmental, and health systems--level factors were all perceived to impact how patients processed, made decisions about, and acted upon their symptoms. Third, participants provided recommendations for system design that involved allowing for user control and freedom. They also stressed the importance of careful wording of decision-support messages, such that messages that recommend them to seek care convey urgency but do not provoke anxiety. Alternatively, messages that recommend they may not need care should make the patient feel heard and reassured. Conclusions: Future solutions for postpartum symptom monitoring should include both somatic and psychological symptoms, which may require combining existing measures to elicit symptoms in a nuanced manner. Solutions should allow for varied, safe interactions to suit individual needs. While mHealth or other apps may not be able to address all the social or financial needs of a person, they may at least provide information, so that patients can easily access other supportive resources. ",
doi="10.2196/47484",
url="https://www.jmir.org/2024/1/e47484",
url="http://www.ncbi.nlm.nih.gov/pubmed/38669066"
}


@Article{info:doi/10.2196/50368,
author="Carey, Grace Emma
and Adeyemi, Oluwasemilore Faith
and Neelakantan, Lakshmi
and Fernandes, Blossom
and Fazel, Mina
and Ford, Tamsin
and 
and Burn, Anne-Marie",
title="Preferences on Governance Models for Mental Health Data: Qualitative Study With Young People",
journal="JMIR Form Res",
year="2024",
month="Apr",
day="23",
volume="8",
pages="e50368",
keywords="young people",
keywords="mental health",
keywords="data",
keywords="governance",
keywords="deliberative democracy",
keywords="mobile phone",
abstract="Background: Improving access to mental health data to accelerate research and improve mental health outcomes is a potentially achievable goal given the substantial data that can now be collected from mobile devices. Smartphones can provide a useful mechanism for collecting mental health data from young people, especially as their use is relatively ubiquitous in high-resource settings such as the United Kingdom and they have a high capacity to collect active and passive data. This raises the interesting opportunity to establish a large bank of mental health data from young people that could be accessed by researchers worldwide, but it is important to clarify how to ensure that this is done in an appropriate manner aligned with the values of young people. Objective: In this study, we discussed the preferences of young people in the United Kingdom regarding the governance, sharing, and use of their mental health data with the establishment of a global data bank in mind. We aimed to determine whether young people want and feel safe to share their mental health data; if so, with whom; and their preferences in doing so. Methods: Young people (N=46) were provided with 2 modules of educational material about data governance models and background in scientific research. We then conducted 2-hour web-based group sessions using a deliberative democracy methodology to reach a consensus where possible. Findings were analyzed using the framework method. Results: Young people were generally enthusiastic about contributing data to mental health research. They believed that broader availability of mental health data could be used to discover what improves or worsens mental health and develop new services to support young people. However, this enthusiasm came with many concerns and caveats, including distributed control of access to ensure appropriate use, distributed power, and data management that included diverse representation and sufficient ethical training for applicants and data managers. Conclusions: Although it is feasible to use smartphones to collect mental health data from young people in the United Kingdom, it is essential to carefully consider the parameters of such a data bank. Addressing and embedding young people's preferences, including the need for robust procedures regarding how their data are managed, stored, and accessed, will set a solid foundation for establishing any global data bank. ",
doi="10.2196/50368",
url="https://formative.jmir.org/2024/1/e50368",
url="http://www.ncbi.nlm.nih.gov/pubmed/38652525"
}


@Article{info:doi/10.2196/46698,
author="Hoffmann, Christin
and Avery, Kerry
and Macefield, Rhiannon
and Dvo?{\'a}k, Tade{\'a}{\vs}
and Snelgrove, Val
and Blazeby, Jane
and Hopkins, Della
and Hickey, Shireen
and Gibbison, Ben
and Rooshenas, Leila
and Williams, Adam
and Aning, Jonathan
and Bekker, L. Hilary
and McNair, GK Angus
and ",
title="Usability of an Automated System for Real-Time Monitoring of Shared Decision-Making for Surgery: Mixed Methods Evaluation",
journal="JMIR Hum Factors",
year="2024",
month="Apr",
day="10",
volume="11",
pages="e46698",
keywords="surgery",
keywords="shared decision-making",
keywords="patient participation",
keywords="mixed methods",
keywords="real-time measurement",
keywords="patient-reported measure",
keywords="electronic data collection",
keywords="usability",
keywords="data collection",
keywords="patient reported",
keywords="satisfaction",
keywords="mobile phone",
abstract="Background: Improving shared decision-making (SDM) for patients has become a health policy priority in many countries. Achieving high-quality SDM is particularly important for approximately 313 million surgical treatment decisions patients make globally every year. Large-scale monitoring of surgical patients' experience of SDM in real time is needed to identify the failings of SDM before surgery is performed. We developed a novel approach to automating real-time data collection using an electronic measurement system to address this. Examining usability will facilitate its optimization and wider implementation to inform interventions aimed at improving SDM. Objective: This study examined the usability of an electronic real-time measurement system to monitor surgical patients' experience of SDM. We aimed to evaluate the metrics and indicators relevant to system effectiveness, system efficiency, and user satisfaction. Methods: We performed a mixed methods usability evaluation using multiple participant cohorts. The measurement system was implemented in a large UK hospital to measure patients' experience of SDM electronically before surgery using 2 validated measures (CollaboRATE and SDM-Q-9). Quantitative data (collected between April 1 and December 31, 2021) provided measurement system metrics to assess system effectiveness and efficiency. We included adult patients booked for urgent and elective surgery across 7 specialties and excluded patients without the capacity to consent for medical procedures, those without access to an internet-enabled device, and those undergoing emergency or endoscopic procedures. Additional groups of service users (group 1: public members who had not engaged with the system; group 2: a subset of patients who completed the measurement system) completed user-testing sessions and semistructured interviews to assess system effectiveness and user satisfaction. We conducted quantitative data analysis using descriptive statistics and calculated the task completion rate and survey response rate (system effectiveness) as well as the task completion time, task efficiency, and relative efficiency (system efficiency). Qualitative thematic analysis identified indicators of and barriers to good usability (user satisfaction). Results: A total of 2254 completed surveys were returned to the measurement system. A total of 25 service users (group 1: n=9; group 2: n=16) participated in user-testing sessions and interviews. The task completion rate was high (169/171, 98.8\%) and the survey response rate was good (2254/5794, 38.9\%). The median task completion time was 3 (IQR 2-13) minutes, suggesting good system efficiency and effectiveness. The qualitative findings emphasized good user satisfaction. The identified themes suggested that the measurement system is acceptable, easy to use, and easy to access. Service users identified potential barriers and solutions to acceptability and ease of access. Conclusions: A mixed methods evaluation of an electronic measurement system for automated, real-time monitoring of patients' experience of SDM showed that usability among patients was high. Future pilot work will optimize the system for wider implementation to ultimately inform intervention development to improve SDM. International Registered Report Identifier (IRRID): RR2-10.1136/bmjopen-2023-079155 ",
doi="10.2196/46698",
url="https://humanfactors.jmir.org/2024/1/e46698",
url="http://www.ncbi.nlm.nih.gov/pubmed/38598276"
}


@Article{info:doi/10.2196/47241,
author="Themistocleous, Sophia
and Argyropoulos, D. Christos
and Vogazianos, Paris
and Shiamakkides, George
and Noula, Evgenia
and Nearchou, Andria
and Yiallouris, Andreas
and Filippou, Charalampos
and Stewart, A. Fiona
and Koniordou, Markela
and Kopsidas, Ioannis
and Askling, H. Helena
and Vene, Sirkka
and Gagneux-Brunon, Amandine
and Prellezo, Baranda Jana
and {\'A}lvarez-Barco, Elena
and Salmanton-Garc{\'i}a, Jon
and Leckler, Janina
and Macken, J. Alan
and Davis, Joanna Ruth
and Azzini, Maria Anna
and Armeftis, Charis
and Hellemans, Margot
and Di Marzo, Romina
and Luis, Catarina
and Olesen, F. Ole
and Valdenmaiier, Olena
and Jakobsen, Finne Stine
and Naucl{\'e}r, Pontus
and Launay, Odile
and Mallon, Patrick
and Ochando, Jordi
and van Damme, Pierre
and Tacconelli, Evelina
and Zaoutis, Theoklis
and Cornely, A. Oliver
and Pana, Dorothea Zoi",
title="Perspectives of European Patient Advocacy Groups on Volunteer Registries and Vaccine Trials: VACCELERATE Survey Study",
journal="JMIR Public Health Surveill",
year="2024",
month="Apr",
day="4",
volume="10",
pages="e47241",
keywords="patient advocacy groups",
keywords="clinical trials",
keywords="volunteer registry",
keywords="vaccines",
keywords="public health",
keywords="healthcare",
keywords="COVID-19",
keywords="vaccine trial",
keywords="VACCELERATE",
keywords="health promotion",
keywords="health advocate",
keywords="clinical trial",
abstract="Background: The VACCELERATE Pan-European Scientific network aims to strengthen the foundation of vaccine trial research across Europe by following the principles of equity, inclusion, and diversity. The VACCELERATE Volunteer Registry network provides access to vaccine trial sites across the European region and supports a sustainable volunteer platform for identifying potential participants for forthcoming vaccine clinical research. Objective: The aim of this study was to approach members of patient advocacy groups (PAGs) across Europe to assess their willingness to register for the VACCELERATE Volunteer Registry and their perspectives related to participating in vaccine trials. Methods: In an effort to understand how to increase recruitment for the VACCELERATE Volunteer Registry, a standardized survey was developed in English and translated into 8 different languages (Dutch, English, French, German, Greek, Italian, Spanish, and Swedish) by the respective National Coordinator team. The online, anonymous survey was circulated, from March 2022 to May 2022, to PAGs across 10 European countries (Belgium, Cyprus, Denmark, France, Germany, Greece, Ireland, Italy, Spain, and Sweden) to share with their members. The questionnaire constituted of multiple choice and open-ended questions evaluating information regarding participants' perceptions on participating in vaccine trials and their willingness to become involved in the VACCELERATE Volunteer Registry. Results: In total, 520 responses were collected and analyzed. The PAG members reported that the principal criteria influencing their decision to participate in clinical trials overall are (1) the risks involved, (2) the benefits that will be gained from their potential participation, and (3) the quality and quantity of information provided regarding the trial. The survey revealed that, out of the 520 respondents, 133 individuals across all age groups were ``positive'' toward registering in the VACCELERATE Volunteer Registry, with an additional 47 individuals reporting being ``very positive.'' Respondents from Northern European countries were 1.725 (95\% CI 1.206-2.468) times more likely to be willing to participate in the VACCELERATE Volunteer Registry than respondents from Southern European countries. Conclusions: Factors discouraging participants from joining vaccine trial registries or clinical trials primarily include concerns of the safety of novel vaccines and a lack of trust in those involved in vaccine development. These outcomes aid in identifying issues and setbacks in present registries, providing the VACCELERATE network with feedback on how to potentially increase participation and enrollment in trials across Europe. Development of European health communication strategies among diverse public communities, especially via PAGs, is the key for increasing patients' willingness to participate in clinical studies. ",
doi="10.2196/47241",
url="https://publichealth.jmir.org/2024/1/e47241",
url="http://www.ncbi.nlm.nih.gov/pubmed/38573762"
}


@Article{info:doi/10.2196/31699,
author="Buchanan, Francine
and Lai, Claudia
and Cohen, Eyal
and Milo-Manson, Golda
and Shachak, Aviv",
title="Decision-making for Parents of Children With Medical Complexities: Activity Theory Analysis",
journal="J Particip Med",
year="2022",
month="Jan",
day="17",
volume="14",
number="1",
pages="e31699",
keywords="shared decision-making",
keywords="activity theory",
keywords="parental decision-making",
keywords="parenting",
keywords="participatory medicine",
keywords="pediatric",
keywords="caregiving",
abstract="Background: Shared decision-making (SDM), a collaborative approach to reach decisional agreement, has been advocated as an ideal model of decision-making in the medical encounter. Frameworks for SDM have been developed largely from the clinical context of a competent adult patient facing a single medical problem, presented with multiple treatment options informed by a solid base of evidence. It is difficult to apply this model to the pediatric setting and children with medical complexity (CMC), specifically since parents of CMC often face a myriad of interconnected decisions with minimal evidence available on the multiple complex and co-existing chronic conditions. Thus, solutions that are developed based on the traditional model of SDM may not improve SDM practices for CMCs and may be a factor contributing to the low rate of SDM practiced with CMCs. Objective: The goal of our study was to address the gaps in the current approach to SDM for CMC by better understanding the decision-making activity among parents of CMCs and exploring what comprises their decision-making activity. Methods: We interviewed 12 participants using semistructured interviews based on activity theory. Participants identified as either a parent of a CMC or a CMC over the age of 18 years. Qualitative framework analysis and an activity theory framework were employed to understand the complexity of the decision-making process in context. Results: Parents of CMCs in our study made decisions based on a mental model of their child's illness, informed by the activities of problem-solving, seeking understanding, obtaining tests and treatment, and caregiving. These findings suggest that the basis for parental choice and values, which are used in the decision-making activity, was developed by including activities that build concrete understanding and capture evidence to support their decisions. Conclusions: Our interviews with parents of CMCs suggest that we can address both the aims of each individual activity and the related outcomes (both intended and unintended) by viewing the decision-making activity as a combination of caregiving, problem-solving, and seeking activities. Clinicians could consider using this lens to focus decision-making discussions on integrating the child's unique situation, the insights parents gain through their decision-making activity, and their clinical knowledge to enhance the understanding between parents and health care providers, beyond the narrow concept of parental values. ",
doi="10.2196/31699",
url="https://jopm.jmir.org/2022/1/e31699",
url="http://www.ncbi.nlm.nih.gov/pubmed/35037890"
}


@Article{info:doi/10.2196/16511,
author="Masi, Domitilla
and Gomez-Rexrode, Elvira Amalia
and Bardin, Rina
and Seidman, Joshua",
title="The ``Preparation for Shared Decision-Making'' Tool for Women With Advanced Breast Cancer: Qualitative Validation Study",
journal="J Participat Med",
year="2019",
month="Dec",
day="20",
volume="11",
number="4",
pages="e16511",
keywords="shared decision making",
keywords="clinical decision making",
keywords="patient preferences",
keywords="cancer",
keywords="breast cancer",
keywords="human-centered design",
keywords="patient care planning",
abstract="Background: The range of decisions and considerations that women with advanced breast cancer (ABC) face can be overwhelming and difficult to manage. Research shows that most patients prefer a shared decision-making (SDM) approach as it provides them with the opportunity to be actively involved in their treatment decisions. The current engagement of these patients in their clinical decisions is suboptimal. Moreover, implementing SDM into routine clinical care can be challenging as patients may not always feel adequately prepared or may not expect to be involved in the decision-making process. Objective: Avalere Health developed the Preparation for Shared Decision-Making (PFSDM) tool to help patients with ABC feel prepared to communicate with their clinicians and engage in decision making aligned with their preferences. The goal of this study was to validate the tool for its acceptability and usability among this patient population. Methods: We interviewed a diverse group of women with ABC (N=30). Interviews were audiorecorded, transcribed, and double coded by using NVivo. We assessed 8 themes to understand the acceptability and usability of the tool. Results: Interviewees expressed that the tool was acceptable for preparing patients for decision making and would be useful for helping patients know what to expect in their care journey. Interviewees also provided useful comments to improve the tool. Conclusions: This validation study confirms the acceptability and usability of the PFSDM tool for women with ABC. Future research should assess the feasibility of the tool's implementation in the clinical workflow and its impact on patient outcomes. ",
doi="10.2196/16511",
url="http://jopm.jmir.org/2019/4/e16511/"
}


@Article{info:doi/10.2196/jopm.9877,
author="Basile, Melissa
and Andrews, Johanna
and Jacome, Sonia
and Zhang, Meng
and Kozikowski, Andrzej
and Hajizadeh, Negin",
title="A Decision Aid to Support Shared Decision Making About Mechanical Ventilation in Severe Chronic Obstructive Pulmonary Disease Patients (InformedTogether): Feasibility Study",
journal="J Participat Med",
year="2018",
month="May",
day="14",
volume="10",
number="2",
pages="e7",
keywords="Chronic Obstructive Pulmonary Disease",
keywords="COPD",
keywords="shared decision making",
keywords="life support",
abstract="Background: Severe Chronic Obstructive Pulmonary Disease patients are often unprepared to make decisions about accepting intubation for respiratory failure. We developed a Web-based decision aid, InformedTogether, to facilitate severe Chronic Obstructive Pulmonary Disease patients' preparation for decision making about whether to accept invasive mechanical ventilation for respiratory failure. Objective: We describe feasibility testing of the InformedTogether decision aid. Methods: Mixed methods, pre- and postintervention feasibility study in outpatient pulmonary and geriatric clinics. Clinicians used InformedTogether with severe Chronic Obstructive Pulmonary Disease patients. Patient-participants completed pre- and postassessments about InformedTogether use. The outcomes measured were the following: feasibility/acceptability, communication (Combined Outcome Measure for Risk Communication [COMRADE], Medical Communication Competency Scale [MCCS], Observing Patient Involvement [OPTION] scales), and effectiveness of InformedTogether on changing patients' knowledge, Decisional Conflict Scale, and motivation. Results: We enrolled 11 clinicians and 38 Chronic Obstructive Pulmonary Disease patients at six sites. Feasibility/acceptability: Clinicians and patients gave positive responses to acceptability questions (mean 74.1/89 max [SD 7.24] and mean 59.63/61 [SD 4.49], respectively). Communication: 96\% of clinicians stated InformedTogether improved communication (modified MCCS mean 44.54/49 [SD 2.97]; mean OPTION score 32.03/48 [SD 9.27]; mean COMRADE Satisfaction 4.31/5.0 [SD 0.58]; and COMRADE Confidence 4.18/5.0 [SD 0.56]). Preference: Eighty percent of patients discussed preferences with their surrogates by 1-month. Effectiveness: Knowledge scores increased significantly after using InformedTogether (mean difference 3.61 [SD 3. 44], P=.001) and Decisional Conflict decreased (mean difference Decisional Conflict Scale pre/post -13.76 [SD 20.39], P=.006). Motivation increased after viewing the decision aid. Conclusions: InformedTogether supports high-quality communication and shared decision making among Chronic Obstructive Pulmonary Disease patients, clinicians, and surrogates. The increased knowledge and opportunity to deliberate and discuss treatment choices after using InformedTogether should lead to improved decision making at the time of critical illness. ",
doi="10.2196/jopm.9877",
url="http://jopm.jmir.org/2018/2/e7/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32461812"
}


@Article{info:doi/10.2196/jopm.9652,
author="Hannon, S. Tamara
and Moore, M. Courtney
and Cheng, R. Erika
and Lynch, O. Dustin
and Yazel-Smith, G. Lisa
and Claxton, EM Gina
and Carroll, E. Aaron
and Wiehe, E. Sarah",
title="Codesigned Shared Decision-Making Diabetes Management Plan Tool for Adolescents With Type 1 Diabetes Mellitus and Their Parents: Prototype Development and Pilot Test",
journal="J Participat Med",
year="2018",
month="May",
day="10",
volume="10",
number="2",
pages="e8",
keywords="adolescent health services",
keywords="patient-centered care",
keywords="research design",
keywords="diabetes mellitus, type 1",
keywords="self-management",
abstract="Background: Adolescents with type 1 diabetes mellitus have difficulty achieving optimal glycemic control, partly due to competing priorities that interfere with diabetes self-care. Often, significant diabetes-related family conflict occurs, and adolescents' thoughts and feelings about diabetes management may be disregarded. Patient-centered diabetes outcomes may be better when adolescents feel engaged in the decision-making process. Objective: The objective of our study was to codesign a clinic intervention using shared decision making for addressing diabetes self-care with an adolescent patient and parent advisory board. Methods: The patient and parent advisory board consisted of 6 adolescents (teens) between the ages 12 and 18 years with type 1 diabetes mellitus and their parents recruited through our institution's Pediatric Diabetes Program. Teens and parents provided informed consent and participated in 1 or both of 2 patient and parent advisory board sessions, lasting 3 to 4 hours each. Session 1 topics were (1) patient-centered outcomes related to quality of life, parent-teen shared diabetes management, and shared family experiences; and (2) implementation and acceptability of a patient-centered diabetes care plan intervention where shared decision making was used. We analyzed audio recordings, notes, and other materials to identify and extract ideas relevant to the development of a patient-centered diabetes management plan. These data were visually coded into similar themes. We used the information to develop a prototype for a diabetes management plan tool that we pilot tested during session 2. Results: Session 1 identified 6 principal patient-centered quality-of-life measurement domains: stress, fear and worry, mealtime struggles, assumptions and judgments, feeling abnormal, and conflict. We determined 2 objectives to be principally important for a diabetes management plan intervention: (1) focusing the intervention on diabetes distress and conflict resolution strategies, and (2) working toward a verbalized common goal. In session 2, we created the diabetes management plan tool according to these findings and will use it in a clinical trial with the aim of assisting with patient-centered goal setting. Conclusions: Patients with type 1 diabetes mellitus can be effectively engaged and involved in patient-centered research design. Teens with type 1 diabetes mellitus prioritize reducing family conflict and fitting into their social milieu over health outcomes at this time in their lives. It is important to acknowledge this when designing interventions to improve health outcomes in teens with type 1 diabetes mellitus. ",
doi="10.2196/jopm.9652",
url="http://jopm.jmir.org/2018/2/e8/"
}