@Article{info:doi/10.2196/50491,
author="Naccarella, Lucio
and Rawstorn, Charles Jonathan
and Kelly, Jaimon
and Quested, Eleanor
and Jenkinson, Stuart
and Kwasnicka, Dominika",
title="Unlocking the Potential for Implementation of Equitable, Digitally Enabled Citizen Science: Multidisciplinary Digital Health Perspective",
journal="J Med Internet Res",
year="2024",
month="Dec",
day="10",
volume="26",
pages="e50491",
keywords="citizen science",
keywords="digital health",
keywords="equity",
keywords="implementation science",
keywords="community",
keywords="research",
keywords="health inequality",
keywords="health equity",
keywords="health integration",
keywords="mental well-being",
keywords="well-being",
doi="10.2196/50491",
url="https://www.jmir.org/2024/1/e50491"
}


@Article{info:doi/10.2196/54841,
author="Calderon Ramirez, Lucrecia Claudia
and Farmer, Yanick
and Downar, James
and Frolic, Andrea
and Opatrny, Lucie
and Poirier, Diane
and Bravo, Gina
and L'Esp{\'e}rance, Audrey
and Gaucher, Nathalie
and Payot, Antoine
and Dahine, Joseph
and Tanuseputro, Peter
and Rousseau, Louis-Martin
and Dumez, Vincent
and Desc{\^o}teaux, Annie
and Dallaire, Clara
and Laporte, Karell
and Bouthillier, Marie-Eve",
title="Assessing the Quality of an Online Democratic Deliberation on COVID-19 Pandemic Triage Protocols for Access to Critical Care in an Extreme Pandemic Context: Mixed Methods Study",
journal="J Particip Med",
year="2024",
month="Nov",
day="11",
volume="16",
pages="e54841",
keywords="quality assessment",
keywords="online democratic deliberation",
keywords="COVID-19 triage or prioritization",
keywords="critical care",
keywords="clinical ethics",
abstract="Background: Online democratic deliberation (ODD) may foster public engagement in new health strategies by providing opportunities for knowledge exchange between experts, policy makers, and the public. It can favor decision-making by generating new points of view and solutions to existing problems. Deliberation experts recommend gathering feedback from participants to optimize future implementation. However, this online modality has not been frequently evaluated. Objective: This study aims to (1) assess the quality of an ODD held in Quebec and Ontario, Canada, on the topic of COVID-19 triage protocols for access to critical care in an extreme pandemic context and (2) determine its transformative aspect according to the perceptions of participants. Methods: We conducted a simultaneous ODD in Quebec and Ontario on May 28 and June 4, 2022, with a diversified target audience not working in the health care system. We used a thematic analysis for the transcripts of the deliberation and the written comments of the participants related to the quality of the process. Participants responded to a postdeliberation questionnaire to assess the quality of the ODD and identify changes in their perspectives on COVID-19 pandemic triage protocols after the deliberation exercise. Descriptive statistics were used. An index was calculated to determine equality of participation. Results: The ODD involved 47 diverse participants from the public (n=20, 43\% from Quebec and n=27, 57\% from Ontario). Five themes emerged: (1) process appreciation, (2) learning experience, (3) reflecting on the common good, (4) technological aspects, and (5) transformative aspects. A total of 46 participants responded to the questionnaire. Participants considered the quality of the ODD satisfactory in terms of process, information shared, reasoning, and videoconferencing. A total of 4 (80\%) of 5 participants reported at least 1 change of perspective on some of the criteria and values discussed. Most participants reported that the online modality was accessible and user-friendly. We found low polarization when calculating equal participation. Improvements identified were measures to replace participants when unable to connect and optimization of time during discussions. Conclusions: Overall, the participants perceived the quality of ODD as satisfactory. Some participants self-reported a change of opinion after deliberation. The online modality may be an acceptable alternative for democratic deliberation but with some organizational adaptations. ",
doi="10.2196/54841",
url="https://jopm.jmir.org/2024/1/e54841"
}


@Article{info:doi/10.2196/56943,
author="Helms, Bernd Yannick
and van der Meer, Akke
and Crutzen, Rik
and Ferreira, Ant{\'o}nio Jos{\'e}
and Kretzschmar, E. Mirjam E.
and Timen, Aura
and Hamdiui, Nora
and Stein, L. Mart",
title="Determinants of Citizens' Intention to Participate in Self-Led Contact Tracing: Cross-Sectional Online Questionnaire Study",
journal="JMIR Public Health Surveill",
year="2024",
month="Oct",
day="30",
volume="10",
pages="e56943",
keywords="contact tracing",
keywords="telemedicine",
keywords="health services research",
keywords="intention",
keywords="public health surveillance",
keywords="machine learning",
keywords="cross-sectional study",
keywords="online questionnaire",
keywords="disease outbreaks",
keywords="task shifting",
abstract="Background: Contact tracing (CT) is a key intervention to contain outbreaks of communicable diseases. During large-scale outbreaks, public health services may lack the resources required to perform CT effectively. One way of mitigating this issue is to shift some of the tasks in CT normally performed by public health services to cases and their contacts, supported by digital tools. We refer to this as ``self-led CT.'' However, while the effectiveness of the self-led CT inherently depends on the willingness and skills of citizens to participate, the determinants of citizens' intention to participate in self-led CT are not yet fully understood. Objective: We aimed to identify determinants of Dutch citizens' intention to participate in self-led CT and assess their potential for behavioral change, so as to identify ``behavior change targets,'' which may be used in the development and implementation of self-led CT to increase citizens' intention to participate. Methods: In March 2022, we performed an online cross-sectional questionnaire study. The questionnaire was developed based on findings from a previous exploratory semistructured interview study and distributed among a Dutch consumer panel. Using all questionnaire items as potential predictors, we performed a random forest analysis to identify determinants of citizens' intention to participate in self-led CT. We then performed an Agglomerative Hierarchical Cluster Analysis to identify groups of related determinants that may be considered overarching behavior change targets. Finally, we used Confidence Interval-Based Estimation of Relevance and calculated the Potential for Change Indices to compare the potential for behavioral change of the selected individual determinants and determinant clusters. Results: The questionnaire was completed by 3019 respondents. Our sample is representative of the Dutch population in terms of age, gender, educational level, and area of residence. Out of 3019 respondents, 2295 (76\%) had a positive intention to participate in self-led CT. We identified 20 determinants of citizens' intention that we grouped into 9 clusters. In general, increasing citizens' trust in the digital tools developed for self-led CT has the highest potential to increase citizens' intention, followed by increasing the belief that using digital tools makes participating in self-led CT easier, reducing privacy-related concerns, and increasing citizens' willingness---and sense of responsibility---to cooperate in CT in general. Conclusions: Overall, Dutch citizens are positive toward participating in self-led CT. Our results provide directions for the development and implementation of self-led CT, which may be particularly useful in preparing for future, large-scale outbreaks. ",
doi="10.2196/56943",
url="https://publichealth.jmir.org/2024/1/e56943"
}


@Article{info:doi/10.2196/47500,
author="de Weger, Esther
and Drewes, Hanneke
and Luijkx, Katrien
and Baan, Caroline",
title="Tracking the Development of Community Engagement Over Time: Realist Qualitative Study",
journal="J Particip Med",
year="2024",
month="May",
day="15",
volume="16",
pages="e47500",
keywords="community engagement",
keywords="citizen involvement",
keywords="health care",
keywords="decentralization",
keywords="realist evaluation",
abstract="Background: A growing interest in engaging communities in the development of health care services and communities has not automatically led to progress or consensus as to how to engage communities successfully, despite the evidence base showing how to leverage enablers and alleviate barriers. Objective: To bridge the gap between the evidence base and which community engagement (CE) approaches have actually been applied in practice over time, this study aims to investigate how CE approaches have changed over the past 4 years in 6 different regions in the Netherlands and citizens' and professionals' experiences underlying these changes. Methods: For the last stage of a multiple case study following the development of CE approaches in 6 different regions in the Netherlands, a realist qualitative case study was conducted. To investigate how CE approaches had changed over the past 4 years, data from the entire 4 years of the study were used, including documents, interview transcripts, and observations. To examine citizens' and professionals' experiences underlying these changes, new interviews were conducted. The latest interview results were discussed with a panel to ensure the results had face validity. Results: The regions had implemented different types of CE approaches over the past 4 years and were adapting these approaches over time. Many of the (remaining) approaches may be operating on a smaller scale. The study identified the following overarching themes along which CE had been adapted: fewer region-wide approaches and more community-focused approaches, more focus on building relationships with (already engaged) citizens and community-led initiatives, and more focus on practical and tangible health promotion and social cohesion activities and less focus on complex ``abstract'' programs. The study identified a further 4 overarching themes highlighting citizens' and professionals' experiences underlying these changes in the CE approaches: a lack of engagement environment, need for facilitative leadership from organizations, need for a clear and shared vision underscoring the importance of CE, and misalignment between citizens' and professionals' perspectives and motivations for CE. All participants had experienced the engagement environment as insufficient. To support CE, professionals experienced the need to develop and receive more facilitative leadership and to develop approaches better equipped to involve citizens in the decision-making process. Citizens experienced the need to better align citizens' and professionals' motivations and aims for CE approaches and to receive longer-term financial support for their community-led initiatives. Conclusions: This study suggests that CE has not yet been embedded within organizational cultures. This has arguably meant that the (remaining) CE approaches are operating on a smaller scale. To enable the further development of CE approaches, an investment in the engagement environment and a shared vision is required. Only then could CE within the regions move beyond the more seemingly smaller-scale CE approaches. ",
doi="10.2196/47500",
url="https://jopm.jmir.org/2024/1/e47500",
url="http://www.ncbi.nlm.nih.gov/pubmed/38748458"
}


@Article{info:doi/10.2196/48707,
author="Fortuna, Karen
and Bohm, Andrew
and Lebby, Stephanie
and Holden, Kisha
and Agic, Branka
and Cosco, D. Theodore
and Walker, Robert",
title="Examining the Feasibility, Acceptability, and Effectiveness of Remote Training on Community-Based Participatory Research: Single-Arm Pre-Post Pilot Study",
journal="J Particip Med",
year="2024",
month="Mar",
day="1",
volume="16",
pages="e48707",
keywords="community-based participatory research",
keywords="CBPR",
keywords="peer support",
keywords="health literacy",
keywords="remote training",
keywords="community-based",
keywords="user",
keywords="mental health",
abstract="Background: Over the past decade, a growing body of scientific evidence has demonstrated that community engagement in research leads to more relevant research, enhances the uptake of research findings, and improves clinical outcomes. Despite the increasing need for the integration of community engagement methodologies into the scientific inquiry, doctoral and master's level competencies in the field of psychiatry often lack dedicated training or coursework on community engagement methodologies. Objective: A total of 13 service users, peer support specialists, caregivers of people with mental health challenges, and scientists (with specialties ranging from basic science to implementation science) aged 18 and older participated in remote training on community-based participatory research. Data were collected at baseline, 2 days, and 3 months. Methods: A total of 13 service users, peer support specialists, caregivers of people with mental health challenges, and scientists (with specialties ranging from basic science to implementation science) aged 18 and older participated in remote training on community-based participatory research. Data were collected at baseline, 2 days, and 3 months. Results: The pilot study demonstrated that a 3-month remote training on community-based participatory research (``Partnership Academy'') was deemed feasible and acceptable by service users, peer support specialists, caregivers of people with mental health challenges, and scientists. Improvements were found in research engagement and the quality of partnership. A marked increase in distrust in the medical system was also found. Groups submitted 4 grant applications and published 1 peer-reviewed journal at a 3-month follow-up. Conclusions: This pre- and postpilot study demonstrated it is possible to train groups of service users, peer support specialists, caregivers of people with mental health challenges, and scientists in community-based participatory research. These findings provide preliminary evidence that a 3-month remote training on community-based participatory research (``Partnership Academy'') is feasible, acceptable, and potentially associated with improvements in research engagement as well as the quality of partnership and output, such as manuscripts and grant applications. ",
doi="10.2196/48707",
url="https://jopm.jmir.org/2024/1/e48707",
url="http://www.ncbi.nlm.nih.gov/pubmed/38427414"
}


@Article{info:doi/10.2196/47395,
author="Bardach, H. Shoshana
and Perry, N. Amanda
and Eccles, Elizabeth
and Carpenter-Song, A. Elizabeth
and Fowler, Ryan
and Miers, M. Erin
and Ovalle, Anais
and de Gijsel, David",
title="Coproduction of Low-Barrier Hepatitis C Virus and HIV Care for People Who Use Drugs in a Rural Community: Brief Qualitative Report",
journal="J Particip Med",
year="2023",
month="Sep",
day="20",
volume="15",
pages="e47395",
keywords="hepatitis C",
keywords="HIV",
keywords="coproducing care",
keywords="testing",
keywords="people who use drugs",
keywords="HCV",
keywords="rural community",
abstract="Background: People who inject drugs are experiencing syndemic conditions with increasing risk of infection with hepatitis C (HCV) and HIV. However, rates of accessing HCV and HIV testing and treatment among people who inject drugs are low for various reasons, including the criminalization of drug use, which leads to a focus on treating drug use rather than caring for drug users. For many people who inject drugs, health care becomes a form of structural violence, resulting in traumatic experiences, fear of police violence, unmet needs, and avoidance of medical care. There is a clear need for novel approaches to health care delivery for people who inject drugs. Objective: This study aimed to analyze the process of a multidisciplinary team---encompassing health care professionals, community representatives, researchers, and people with lived experience using drugs---that was formed to develop a deep understanding of the experiences of people who inject drugs and local ecosystem opportunities and constraints to inform the cocreation of low-barrier, innovative HCV or HIV care in a rural community. Given the need for innovative approaches to redesigning health care, we sought to identify challenges and tensions encountered in this process and strategies for overcoming these challenges. Methods: Analysis was based on an in-depth review of meeting notes from the project year, followed by member-checking with the project team to revise and expand upon the challenges encountered and strategies identified to navigate these challenges. Results: Challenges and tensions included: scoping the project, setting the pace and urgency of the work, adapting to web-based work, navigating ethics and practice of payment, defining success, and situating the project for sustainability. Strategies to navigate these challenges included: dedicated effort to building personal and meaningful connections, fostering mutual respect, identifying common ground to make shared decisions, and redefining successes. Conclusions: While cocreated care presents challenges, the resulting program is strengthened by challenging assumptions and carefully considering various perspectives to think creatively and productively about solutions. ",
doi="10.2196/47395",
url="https://jopm.jmir.org/2023/1/e47395",
url="http://www.ncbi.nlm.nih.gov/pubmed/37728975"
}


@Article{info:doi/10.2196/39339,
author="Lewis, Dana
and Salmi, Liz
and Staley, Alicia
and Harlow, John",
title="From Individuals to Systems and Contributions to Creations: Novel Framework for Mapping the Efforts of Individuals by Convening The Center of Health and Health Care",
journal="J Particip Med",
year="2022",
month="Nov",
day="3",
volume="14",
number="1",
pages="e39339",
keywords="patient-centered care",
keywords="patient role",
keywords="patient involvement",
keywords="access to care",
keywords="patient-centered outcomes",
keywords="co-design",
keywords="participatory design",
keywords="patient and public involvement",
abstract="Background: People with lived health care experiences (often referred to as ``patients'') are increasingly contributing to health care and are most effective when they are involved as partners who can contribute complementary knowledge alongside other stakeholders in health care. Objective: Convening The Center aimed to bring together ``people known as patients''---the center of health care---to address priorities as they defined them. Methods: According to the original project design, an in-person gathering was to be conducted; however, as a result of the COVID-19 pandemic, the in-person gathering was transformed into a series of digital gatherings, including an in-depth interview phase, small-group gatherings, and a collective convening of 25 participants (22 women and 3 men from the United States, India, Costa Rica, Sweden, and Pakistan). Each participant was interviewed on Zoom (Zoom Video Communications Inc), and the interview data were thematically analyzed to design a subsequent small group and then full cohort Zoom sessions. Visual note-taking was used to reinforce a shared understanding of each individual- and group-level conversation. Results: The interviews and gatherings for Convening The Center offered unique perspectives on patient activities in research, health innovation, and problem-solving. This project further developed a novel, two-spectrum framework for assessing different experiences that patients may have or seek to gain, based on what patients actually do, and different levels of patients' involvement, ranging from individual to community to systemic involvement. Conclusions: The descriptors of patients in academic literature typically focus on what health care providers think patients ``are'' rather than on what patients ``do.'' The primary result of this project is a framework for mapping what patients ``do'' and ``where'' they do their work along two spectra: from creating their own projects to contributing to work initiated by others and from working at levels ranging from individual to community to systems. A better understanding of these spectra may enable researchers to more effectively engage and leverage patient expertise in health care research and innovation. ",
doi="10.2196/39339",
url="https://jopm.jmir.org/2022/1/e39339",
url="http://www.ncbi.nlm.nih.gov/pubmed/36326807"
}


@Article{info:doi/10.2196/38209,
author="Kennedy, Blair Ann
and Riyad, Youssef Cindy Nessim
and Ellis, Ryan
and Fleming, R. Perry
and Gainey, Mallorie
and Templeton, Kara
and Nourse, Anna
and Hardaway, Virginia
and Brown, April
and Evans, Pam
and Natafgi, Nabil",
title="Evaluating a Global Assessment Measure Created by Standardized Patients for the Multiple Mini Interview in Medical School Admissions: Mixed Methods Study",
journal="J Particip Med",
year="2022",
month="Aug",
day="30",
volume="14",
number="1",
pages="e38209",
keywords="co-design",
keywords="participatory design",
keywords="medical schools",
keywords="exploratory sequential mixed methods design",
keywords="school admission criteria",
keywords="medical students",
keywords="communication",
keywords="multiple mini interviews",
keywords="interview",
keywords="patient",
keywords="student",
keywords="medical school",
keywords="acceptance",
keywords="study design",
abstract="Background: Standardized patients (SPs) are essential stakeholders in the multiple mini interviews (MMIs) that are increasingly used to assess medical school applicants' interpersonal skills. However, there is little evidence for their inclusion in the development of instruments. Objective: This study aimed to describe the process and evaluate the impact of having SPs co-design and cocreate a global measurement question that assesses medical school applicants' readiness for medical school and acceptance status. Methods: This study used an exploratory, sequential, and mixed methods study design. First, we evaluated the initial MMI program and determined the next quality improvement steps. Second, we held a collaborative workshop with SPs to codevelop the assessment question and response options. Third, we evaluated the created question and the additional MMI rubric items through statistical tests based on 1084 applicants' data from 3 cohorts of applicants starting in the 2018-2019 academic year. The internal reliability of the MMI was measured using a Cronbach $\alpha$ test, and its prediction of admission status was tested using a forward stepwise binary logistic regression. Results: Program evaluation indicated the need for an additional quantitative question to assess applicant readiness for medical school. In total, 3 simulation specialists, 2 researchers, and 21 SPs participated in a workshop leading to a final global assessment question and responses. The Cronbach $\alpha$'s were >0.8 overall and in each cohort year. The final stepwise logistic model for all cohorts combined was statistically significant (P<.001), explained 9.2\% (R2) of the variance in acceptance status, and correctly classified 65.5\% (637/972) of cases. The final model consisted of 3 variables: empathy, rank of readiness, and opening the encounter. Conclusions: The collaborative nature of this project between stakeholders, including nonacademics and researchers, was vital for the success of this project. The SP-created question had a significant impact on the final model predicting acceptance to medical school. This finding indicates that SPs bring a critical perspective that can improve the process of evaluating medical school applicants. ",
doi="10.2196/38209",
url="https://jopm.jmir.org/2022/1/e38209",
url="http://www.ncbi.nlm.nih.gov/pubmed/36040776"
}


@Article{info:doi/10.2196/32125,
author="Masselot, Camille
and Greshake Tzovaras, Bastian
and Graham, B. Chris L.
and Finnegan, Gary
and Jeyaram, Rathin
and Vitali, Isabelle
and Landrain, Thomas
and Santolini, Marc",
title="Implementing the Co-Immune Open Innovation Program to Address Vaccination Hesitancy and Access to Vaccines: Retrospective Study",
journal="J Particip Med",
year="2022",
month="Jan",
day="21",
volume="14",
number="1",
pages="e32125",
keywords="open science",
keywords="open innovation",
keywords="programmatic research",
keywords="collective intelligence",
keywords="web based",
keywords="immunization",
keywords="vaccination access",
keywords="vaccine hesitancy",
keywords="innovation",
keywords="vaccine",
keywords="public health",
keywords="access",
keywords="framework",
keywords="participatory",
keywords="design",
keywords="implementation",
abstract="Background: The rise of major complex public health problems, such as vaccination hesitancy and access to vaccination, requires innovative, open, and transdisciplinary approaches. Yet, institutional silos and lack of participation on the part of nonacademic citizens in the design of solutions hamper efforts to meet these challenges. Against this background, new solutions have been explored, with participatory research, citizen science, hackathons, and challenge-based approaches being applied in the context of public health. Objective: Our aim was to develop a program for creating citizen science and open innovation projects that address the contemporary challenges of vaccination in France and around the globe. Methods: We designed and implemented Co-Immune, a program created to tackle the question of vaccination hesitancy and access to vaccination through an online and offline challenge-based open innovation approach. The program was run on the open science platform Just One Giant Lab. Results: Over a 6-month period, the Co-Immune program gathered 234 participants of diverse backgrounds and 13 partners from the public and private sectors. The program comprised 10 events to facilitate the creation of 20 new projects, as well as the continuation of two existing projects, to address the issues of vaccination hesitancy and access, ranging from app development and data mining to analysis and game design. In an open framework, the projects made their data, code, and solutions publicly available. Conclusions: Co-Immune highlights how open innovation approaches and online platforms can help to gather and coordinate noninstitutional communities in a rapid, distributed, and global way toward solving public health issues. Such initiatives can lead to the production and transfer of knowledge, creating novel solutions in the public health sector. The example of Co-Immune contributes to paving the way for organizations and individuals to collaboratively tackle future global challenges. ",
doi="10.2196/32125",
url="https://jopm.jmir.org/2022/1/e32125",
url="http://www.ncbi.nlm.nih.gov/pubmed/35060917"
}


@Article{info:doi/10.2196/25867,
author="Myers, L. Amanda
and Collins-Pisano, Caroline
and Ferron, C. Joelle
and Fortuna, L. Karen",
title="Feasibility and Preliminary Effectiveness of a Peer-Developed and Virtually Delivered Community Mental Health Training Program (Emotional CPR): Pre-Post Study",
journal="J Particip Med",
year="2021",
month="Mar",
day="4",
volume="13",
number="1",
pages="e25867",
keywords="Emotional CPR (eCPR)",
keywords="peer support",
keywords="peer-delivered training",
keywords="mental health",
keywords="community mental health",
abstract="Background: The COVID-19 pandemic has led to a global mental health crisis, highlighting the need for a focus on community-wide mental health. Emotional CPR (eCPR) is a program and practice developed by persons with a lived experience of recovery from trauma or mental health challenges to train community members from diverse backgrounds to support others through mental health crises. eCPR trainers have found that eCPR may promote feelings of belonging by increasing supportive behaviors toward individuals with mental health problems. Thus, clinical outcomes related to positive and negative affect would improve along with feelings of loneliness. Objective: This study examined the feasibility and preliminary effectiveness of eCPR. Methods: We employed a pre-post design with 151 individuals, including peer support specialists, service users, clinicians, family members, and nonprofit leaders, who participated in virtual eCPR trainings between April 20, 2020, and July 31, 2020. Instruments were administered before and after training and included the Herth Hope Scale; Empowerment Scale; Flourishing Scale (perceived capacity to support individuals); Mindful Attention Awareness Scale; Active-Empathic Listening Scale (supportive behaviors toward individuals with mental health challenges); Social Connectedness Scale (feelings of belonging and connection with others); Positive and Negative Affect Schedule; and University of California, Los Angeles 3-item Loneliness Scale (symptoms and emotions). The eCPR fidelity scale was used to determine the feasibility of delivering eCPR with fidelity. We conducted 2-tailed paired t tests to examine posttraining improvements related to each scale. Additionally, data were stratified to identify pre-post differences by role. Results: Findings indicate that it is feasible for people with a lived experience of a mental health condition to develop a program and train people to deliver eCPR with fidelity. Statistically significant pre-post changes were found related to one's ability to identify emotions, support others in distress, communicate nonverbally, share emotions, and take care of oneself, as well as to one's feelings of social connectedness, self-perceived flourishing, and positive affect (P?.05). Findings indicated promising evidence of pre-post improvements (not statistically significant) related to loneliness, empowerment, active-empathetic listening, mindfulness awareness, and hope. Nonprofit leaders and workers demonstrated the greatest improvements related to loneliness, social connectedness, empathic listening, and flourishing. Peer support specialists demonstrated the greatest improvements related to positive affect, and clinicians demonstrated the greatest improvements related to mindfulness awareness. Conclusions: Promising evidence indicates that eCPR, a peer-developed and peer-delivered program, may increase feelings of belonging while increasing supportive behaviors toward individuals with mental health problems and improving clinical outcomes related to positive and negative affect and feelings of loneliness. ",
doi="10.2196/25867",
url="https://jopm.jmir.org/2021/1/e25867",
url="http://www.ncbi.nlm.nih.gov/pubmed/33661129"
}


@Article{info:doi/10.2196/22297,
author="Zhang, Shouling
and Henderson, S. Tiffany
and Scalchunes, Christopher
and Sullivan, E. Kathleen
and Jongco III, M. Artemio",
title="Persons Living With Primary Immunodeficiency Act as Citizen Scientists and Launch Prospective Cohort Body Temperature Study",
journal="J Participat Med",
year="2020",
month="Nov",
day="30",
volume="12",
number="4",
pages="e22297",
keywords="fever",
keywords="temperature",
keywords="primary immunodeficiency",
abstract="Background: Although fever is considered a sign of infection, many individuals with primary immunodeficiency (PI) anecdotally report a lower-than-normal average body temperature on online forums sponsored by the Immune Deficiency Foundation (IDF). There is limited knowledge about the average body temperature and fever response in PI. Objective: This study aims to compare median body temperatures between adults with and without PI diagnoses living in the same household and to engage individuals living with PI throughout the research process. Methods: Patients with PI designed and launched a prospective cohort comparison study as citizen scientists. A multidisciplinary team designed and implemented a patient-informed study with continuous patient-driven input. Median body temperatures were compared between the 2 cohorts using the Mann-Whitney test with Bonferroni correction. The IDF conducted a post-study patient experience survey. Results: Data from 254 households were analyzed (254/350, 72.6\% participation rate). The PI population was predominantly female (218/254, 85.8\%), White (248/254, 97.6\%), and with a median age of 49 years. The non-PI population was largely male (170/254, 66.9\%), White (236/254, 92.9\%), and with a median age of 53 years. Common variable immunodeficiency was the most common PI diagnosis (190/254, 74.8\%). Of the 254 individuals with PI, 123 (48.4\%) reported a lower-than-normal nonsick body temperature, whereas 108 (42.5\%) reported a normal (between 97{\textdegree}F and 99{\textdegree}F) nonsick body temperature. Among individuals with PI, when infected, 67.7\% (172/254) reported the absence of fever, whereas 19.7\% (50/254) reported a normal fever response. The recorded median body temperature was minimally but statistically significantly higher for patients with PI in the morning. Although 22.4\% (57/254) of patients with PI self-reported illness, a fever of 100.4{\textdegree}F or higher was uncommon; 77.2\% (196/254) had a normal temperature (between 97{\textdegree}F and 99{\textdegree}F), and 16.2\% (41/254) had a lower-than-normal temperature (between 95.0{\textdegree}F and 96.9{\textdegree}F) when sick. For these sick patients with PI, the median body temperature was minimally but statistically significantly higher for patients in the morning and early evening. Overall, 90.9\% (231/254) of participants would be very likely to participate in future IDF studies, although 94.1\% (239/254) participants had never taken part in previous studies. Conclusions: To our knowledge, this is the first study to evaluate average body temperature in individuals with PI. Although there were small statistically significant differences in body temperatures between PI and non-PI subjects, the clinical significance is unclear and should be interpreted with caution, given the methodological issues associated with our small convenience sample and study design. As PIs are heterogeneous, more research is needed about how the fever response differs among diverse PIs compared with healthy controls. This study highlights that individuals with PI are knowledgeable about their health and can offer unique insights and direction to researchers and clinicians. ",
doi="10.2196/22297",
url="http://jopm.jmir.org/2020/4/e22297/",
url="http://www.ncbi.nlm.nih.gov/pubmed/33252341"
}


@Article{info:doi/10.2196/15447,
author="Meinlschmidt, Gunther
and Berdajs, Denis
and Moser-Starck, Roger
and Frick, Alexander
and Gross, Sebastian
and Schurr, Ulrich
and Eckstein, S. Friedrich
and Hunziker, Sabina
and Schaefert, Rainer",
title="Perceived Need for Psychosocial Support After Aortic Dissection: Cross-Sectional Survey",
journal="J Participat Med",
year="2020",
month="Jul",
day="6",
volume="12",
number="3",
pages="e15447",
keywords="aortic dissection",
keywords="patient involvement",
keywords="psychosocial support",
keywords="psychosomatic",
keywords="psychotherapy",
keywords="treatment need",
abstract="Background: The gold standard management of aortic dissection, a life-threatening condition, includes multidisciplinary approaches. Although mental distress following aortic dissection is common, evidence-based psychosocial interventions for aortic dissection survivors are lacking. Objective: The aim of this study is to identify the perceived psychosocial needs of aortic dissection survivors by surveying patients, their relatives, and health professionals to inform the development of such interventions. Methods: This study used a cross-sectional survey and collected responses from 41 participants (27 patients with aortic dissection, 8 relatives of patients with aortic dissection, and 6 health professionals) on key topics, types of interventions, best timing, anticipated success, and the intended effects and side effects of psychosocial interventions after aortic dissection. Results: The principal intervention topics were ``changes in everyday life'' (28/41, 68\%, 95\% CI 54.5\%-82.9\%), ``anxiety'' (25/41, 61\%, 95\% CI 46.2\%-76.2\%), ``uncertainty'' (24/41, 59\%, 95\% CI 42.9\%-73.2\%), ``tension/distress'' (24/41, 59\%, 95\% CI 43.9\%-73.8\%), and ``trust in the body'' (21/41, 51\%, 95\% CI 35.9\%-67.5\%). The most commonly indicated intervention types were ``family/relative therapy'' (21/41, 51\%, 95\% CI 35\%-65.9\%) and ``anxiety treatment'' (21/41, 51\%, 95\% CI 35\%-67.5\%). The most recommended intervention timing was ``during inpatient rehabilitation'' (26/41, 63\%, 95\% CI 47.6\%-77.5\%) followed by ``shortly after inpatient rehabilitation'' (20/41, 49\%, 95\% CI 32.4\%-65\%). More than 95\% (39/41) of respondents anticipated a benefit from psychosocial interventions following aortic dissection dissection, expecting a probable improvement in 68.6\% (95\% CI 61.4\%-76.2\%) of aortic dissection survivors, a worse outcome for 5\% (95\% CI 2.9\%-7.9\%), and that 6\% (95\% CI 1.8\%-10.4\%) would have negative side effects due to such interventions. Conclusions: Our findings highlight a substantial need for psychosocial interventions in aortic dissection survivors and indicate that such interventions would be a success. They provide a basis for the development and evaluation of interventions as part of state-of-the-art aortic dissection management. ",
doi="10.2196/15447",
url="https://jopm.jmir.org/2020/3/e15447"
}


@Article{info:doi/10.2196/13924,
author="Gordon, Deborah
and Ford, Anna
and Triedman, Natalie
and Hart, Kamber
and Perlis, Roy",
title="Health Care Consumer Shopping Behaviors and Sentiment: Qualitative Study",
journal="J Participat Med",
year="2020",
month="Jun",
day="16",
volume="12",
number="2",
pages="e13924",
keywords="decision making",
keywords="choice behavior",
keywords="mental processes",
keywords="behavioral economics",
keywords="health costs",
keywords="health care costs",
keywords="treatment costs",
keywords="cost sharing",
keywords="health expenditures",
keywords="out-of-pocket costs",
abstract="Background: Although some health care market reforms seek to better engage consumers in purchasing health care services, health consumer behavior remains poorly understood. Objective: This study aimed to characterize the behaviors and sentiment of consumers who attempt to shop for health care services. Methods: We used a semistructured interview guide based on grounded theory and standard qualitative research methods to examine components of a typical shopping process in a sample size of 54 insured adults. All interviews were systematically coded to capture consumer behaviors, barriers to shopping behavior, and sentiments associated with these experiences. Results: Participants most commonly described determining and evaluating options, seeking value, and assessing or evaluating value. In total, 83\% (45/54) of participants described engaging in negotiations regarding health care purchasing. The degree of positive sentiment expressed in the interview was positively correlated with identifying and determining the health plan, provider, or treatment options; making the decision to purchase; and evaluating the decision to purchase. Conversely, negative sentiment was correlated with seeking value and making the decision to buy. Conclusions: Consumer shopping behaviors are prevalent in health care purchasing and can be mapped to established consumer behavior models. ",
doi="10.2196/13924",
url="http://jopm.jmir.org/2020/2/e13924/"
}


@Article{info:doi/10.2196/18272,
author="Schoch-Spana, Monica
and Brunson, K. Emily
and Gwon, Howard
and Regenberg, Alan
and Toner, S. Eric
and Daugherty-Biddison, L. Elizabeth",
title="Influence of Community and Culture in the Ethical Allocation of Scarce Medical Resources in a Pandemic Situation: Deliberative Democracy Study",
journal="J Participat Med",
year="2020",
month="Mar",
day="30",
volume="12",
number="1",
pages="e18272",
keywords="pandemic",
keywords="COVID19",
keywords="influenza",
keywords="disaster",
keywords="preparedness",
keywords="scarce resources",
keywords="culture",
keywords="ethics",
abstract="Background: Stark gaps exist between projected health needs in a pandemic situation and the current capacity of health care and medical countermeasure systems. Existing pandemic ethics discussions have advocated to engage the public in scarcity dilemmas and attend the local contexts and cultural perspectives that shape responses to a global health threat. This public engagement study thus considers the role of community and culture in the ethical apportionment of scarce health resources, specifically ventilators, during an influenza pandemic. It builds upon a previous exploration of the values and preferences of Maryland residents regarding how a finite supply of mechanical ventilators ought to be allocated during a severe global outbreak of influenza. An important finding of this earlier research was that local history and place within the state engendered different ways of thinking about scarcity. Objective: Given the intrastate variation in the themes expressed by Maryland participants, the project team sought to examine interstate differences by implementing the same protocol elsewhere to answer the following questions. Does variation in ethical frames of reference exist within different regions of the United States? What practical implications does evidence of sameness and difference possess for pandemic planners and policymakers at local and national levels? Methods: Research using the same deliberative democracy process from the Maryland study was conducted in Central Texas in March 2018 among 30 diverse participants, half of whom identified as Hispanic or Latino. Deliberative democracy provides a moderated process through which community members can learn facts about a public policy matter from experts and explore their own and others' views. Results: Participants proposed that by evenly distributing supplies of ventilators and applying clear eligibility criteria consistently, health authorities could enable fair allocation of scarce lifesaving equipment. The strong identification, attachment, and obligation of persons toward their nuclear and extended families emerged as a distinctive regional and ethnic core value that has practical implications for the substance, administration, and communication of allocation frameworks. Conclusions: Maryland and Central Texas residents expressed a common, overriding concern about the fairness of allocation decisions. Central Texas deliberants, however, more readily expounded upon family as a central consideration. In Central Texas, family is a principal, culturally inflected lens through which life and death matters are often viewed. Conveners of other pandemic-related public engagement exercises in the United States have advocated the benefits of transparency and inclusivity in developing an ethical allocation framework; this study demonstrates cultural competence as a further advantage. ",
doi="10.2196/18272",
url="http://jopm.jmir.org/2020/1/e18272/"
}


@Article{info:doi/10.2196/11167,
author="Chiauzzi, Emil
and Drahos, Jennifer
and Sarkey, Sara
and Curran, Christopher
and Wang, Victor
and Tomori, Dapo",
title="Patient Perspective of Cognitive Symptoms in Major Depressive Disorder: Retrospective Database and Prospective Survey Analyses",
journal="J Participat Med",
year="2019",
month="May",
day="16",
volume="11",
number="2",
pages="e11167",
keywords="cognition",
keywords="cognitive function",
keywords="depression",
keywords="major depressive disorder",
keywords="patient-centered care",
keywords="patient preference",
keywords="relapse",
keywords="remission",
keywords="symptoms",
abstract="Background: Major depressive disorder (MDD) is a common and burdensome condition. The clinical understanding of MDD is shaped by current research, which lacks insight into the patient perspective. Objective: This two-part study aimed to generate data from PatientsLikeMe, an online patient network, on the perception of cognitive symptoms and their prioritization in MDD. Methods: A retrospective data analysis (study 1) was used to analyze data from the PatientsLikeMe community with self-reported MDD. Information on patient demographics, comorbidities, self-rated severity of MDD, treatment effectiveness, and specific symptoms of MDD was analyzed. A prospective electronic survey (study 2) was emailed to longstanding and recently active members of the PatientsLikeMe MDD community. Study 1 analysis informed the objectives of the study 2 survey, which were to determine symptom perception and prioritization, cognitive symptoms of MDD, residual symptoms, and medication effectiveness. Results: In study 1 (N=17,166), cognitive symptoms were frequently reported, including ``severe'' difficulty in concentrating (28\%). Difficulty in concentrating was reported even among patients with no/mild depression (80\%) and those who considered their treatment successful (17\%). In study 2 (N=2525), 23\% (118/508) of patients cited cognitive symptoms as a treatment priority. Cognitive symptoms correlated with depression severity, including difficulty in making decisions, concentrating, and thinking clearly (rs=0.32, 0.36, and 0.34, respectively). Cognitive symptoms interfered with meaningful relationships and daily life tasks and had a profound impact on patients' ability to work and recover from depression. Conclusions: Patients acknowledge that cognitive dysfunction in MDD limits their ability to recover fully and return to a normal level of social and occupational functioning. Further clinical understanding and characterization of MDD for symptom prioritization and relapse risk due to residual cognitive impairment are required to help patients return to normal cognitive function and aid their overall recovery. ",
doi="10.2196/11167",
url="https://jopm.jmir.org/2019/2/e11167/"
}


@Article{info:doi/10.2196/12380,
author="Fortuna, Karen
and Barr, Paul
and Goldstein, Carly
and Walker, Robert
and Brewer, LaPrincess
and Zagaria, Alexandra
and Bartels, Stephen",
title="Application of Community-Engaged Research to Inform the Development and Implementation of a Peer-Delivered Mobile Health Intervention for Adults With Serious Mental Illness",
journal="J Participat Med",
year="2019",
month="Mar",
day="19",
volume="11",
number="1",
pages="e12380",
keywords="stakeholder participation",
keywords="mental health",
keywords="patient participation",
keywords="consumer advocacy",
keywords="mobile health",
abstract="Background: Involving certified peer specialists in all phases of intervention development and research is a high priority to advance peer-delivered services. Certified peer specialists are individuals with a lived experience of a mental illness, and they are trained and accredited to provide Medicaid reimbursable mental health services. Community-engaged research can facilitate the development and implementation of peer-delivered interventions; however, little is known about the processes. We present our application of community-engaged research to inform the development and implementation of a peer-delivered mobile health (mHealth) intervention for adults with serious mental illness. Objective: The aim of this study was to present a framework that can be used as a guide for researchers and certified peer specialists to develop and implement peer-delivered mHealth interventions in community settings. Methods: Informed by principles of community-engaged research, we developed the Academic Researchers-Certified Peer Specialists mHealth Research Continuum. Principles of community-engaged research included in the Continuum include the following: (1) develop a clear understanding of the purpose, goal, and population involved in community change; (2) become knowledgeable about all aspects of the community; (3) interact and establish relationships with the community; (4) encourage community self-determination; (5) partner with the community; (6) respect community diversity and culture; (7) activate community assets and develop capacity; (8) maintain flexibility; and (9) commit to long-term collaboration. Results: Overall, 4 certified peer specialists participated in all phases of intervention development and research. Individuals who participated in the Academic Researchers-Certified Peer Specialists' mHealth Research Continuum collaborated on 5 studies advancing peers' roles in services delivery using mHealth and secured grant funding from a foundation to sustain their study. The Academic Researchers-Certified Peer Specialists' mHealth Research Continuum has created a rare environment of inclusion by combining scientific expertise and certified peer specialists' expertise to achieve a shared vision. Conclusions: This study delineates a process by which academic researchers and certified peer specialists participated in community-engaged research to develop and implement peer-delivered mHealth interventions in community settings. ",
doi="10.2196/12380",
url="http://jopm.jmir.org/2019/1/e12380/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32095314"
}


@Article{info:doi/10.2196/10815,
author="Macdonald, George Graham
and Koehn, Cheryl
and Attara, Gail
and Stordy, Allan
and Allerdings, Marilee
and Leese, Jenny
and Li, C. Linda
and Backman, L. Catherine",
title="Patient Perspectives on the Challenges and Responsibilities of Living With Chronic Inflammatory Diseases: Qualitative Study",
journal="J Participat Med",
year="2018",
month="Nov",
day="21",
volume="10",
number="4",
pages="e10815",
keywords="patient participation",
keywords="chronic disease",
keywords="arthritis",
keywords="inflammation",
abstract="Background: Collectively, chronic inflammatory diseases take a great toll on individuals and society in terms of participation restrictions, quality of life, and economic costs. Although prior qualitative studies have reported patients' experiences and challenges living with specific diseases, few have compared the consequences of disease management in daily life across different types of inflammatory diseases in studies led by patient partners. Objective: The aim of this study was to identify the significant consequences of inflammatory arthritis, psoriasis, and inflammatory bowel diseases on daily life and explore commonalities across diseases. Methods: A cross-sectional Web-based survey was designed by patient research partners and distributed by patient awareness organizations via their social media channels and by sharing a link in a newspaper story. One open-ended item asked about burdens and responsibilities experienced in daily life. Informed by narrative traditions in qualitative health research, we applied a thematic content analysis to participants' written accounts in response to this item. This is an example of a study conceived, conducted, and interpreted with patients as research partners. Results: A total of 636 Canadians, with a median age band of 55-64 years, submitted surveys, and 80\% of the respondents were women. Moreover, 540 participants provided written substantive responses to the open-ended item. Overall, 4 main narratives were generated: (1) daily life disrupted; (2) socioeconomic vulnerabilities; (3) stresses around visible, invisible, and hiding disabilities; and (4) actions aimed at staying positive. Ways in which participants experienced social stigma, pain and fatigue, balancing responsibilities, and worries about the future appeared throughout all 4 narratives. Conclusions: People living with chronic inflammatory diseases affecting joints, skin, and the digestive tract report important gaps between health, social, and economic support systems that create barriers to finding the services they need to sustain their health. Regardless of diagnosis, they report similar experiences navigating the consequences of lifelong conditions, which have implications for policy makers. There is a need for outcome measures in research and service delivery to address patient priorities and for programs to fill gaps created by the artificial administrative separation of health services, social services, and income assistance. ",
doi="10.2196/10815",
url="http://jopm.jmir.org/2018/4/e10815/"
}


@Article{info:doi/10.2196/10665,
author="Alami, Hassane
and Gagnon, Marie-Pierre
and Fortin, Jean-Paul",
title="Involving Citizen-Patients in the Development of Telehealth Services: Qualitative Study of Experts' and Citizen-Patients' Perspectives",
journal="J Participat Med",
year="2018",
month="Nov",
day="12",
volume="10",
number="4",
pages="e10665",
keywords="patient participation",
keywords="public participation",
keywords="health services",
keywords="telehealth",
keywords="health technology assessment",
keywords="decision making",
abstract="Background: Decisions regarding telehealth services in Quebec (Canada) have been largely technocratic by nature for the last 15 years, and the involvement of citizen-patients in the development of telehealth services is virtually nonexistent. In view of the societal challenges that telehealth raises, citizen-patient involvement could ensure more balance between evidence from traditional research methodologies and technical experts and the needs and expectations of populations in decisions about telehealth services. Objective: This study aimed to explore the perception of various stakeholders (decision makers, telehealth program and policy managers, clinicians, researchers, evaluators, and citizen-patients) regarding the involvement of citizen-patients in the development of telehealth services in Quebec. In particular, we explored its potential advantages, added value, obstacles, and challenges it raises for decision making. Methods: We used a qualitative research approach based on semistructured individual interviews, with a total of 29 key actors. Respondents were identified by the contact network method. Interviews were recorded and transcribed verbatim. A pragmatic content thematic analysis was performed. To increase the capacity for interpretation and analysis, we were guided by the principle of data triangulation. Results: Citizen-patient involvement in decision making is perceived more as a theoretical idea than as a practical reality in health care organizations or in the health system. There is very little connection between citizen involvement structures or patient and user groups and telehealth leaders. For the respondents, citizen-patient involvement in telehealth could increase the accountability and transparency of decision making and make it more pragmatic within an innovation-driven health system. This involvement could also make citizen-patients ambassadors and promoters of telehealth and improve the quality and organization of health services while ensuring they are more socially relevant. Challenges and constraints that were reported include the ambiguity of the citizen-patient, who should be involved and how, claimant citizen-patient, the risk of professionalization of citizen-patient involvement, and the gap between decision time versus time to involve the citizen-patient. Conclusions: This study provides a basis for future research on the potential of involving citizen-patients in telehealth. There is a great need for research on the issue of citizen-patient involvement as an organizational innovation (in terms of decision-making model). Research on the organizational predisposition and preparation for such a change becomes central. More efforts to synthesize and translate knowledge on public participation in decision making in the health sector, particularly in the field of technology development, are needed. ",
doi="10.2196/10665",
url="http://jopm.jmir.org/2018/4/e10665/"
}


@Article{info:doi/10.2196/jopm.8958,
author="Katsanis, Huston Sara
and Minear, A. Mollie
and Sadeghpour, Azita
and Cope, Heidi
and Perilla, Yezmin
and Cook-Deegan, Robert
and 
and Katsanis, Nicholas
and Davis, E. Erica
and Angrist, Misha",
title="Participant-Partners in Genetic Research: An Exome Study with Families of Children with Unexplained Medical Conditions",
journal="J Participat Med",
year="2018",
month="Jan",
day="30",
volume="10",
number="1",
pages="e2",
keywords="partnership",
keywords="exome sequencing",
keywords="genome sequencing",
keywords="return of results",
keywords="participant engagement",
abstract="Background: Unlike aggregate research on groups of participants with a particular disorder, genomic research on discrete families' rare conditions could result in data of use to families, their healthcare, as well as generating knowledge on the human genome. Objective: In a study of families seeking to rule in/out genetic causes for their children's medical conditions via exome sequencing, we solicited their views on the importance of genomic information. Our aim was to learn the interests of parents in seeking genomic research data and to gauge their responsiveness and engagement with the research team. Methods: At enrollment, we offered participants options in the consent form for receiving potentially clinically relevant research results. We also offered an option of being a ``partner'' versus a ``traditional'' participant; partners could be re-contacted for research and study activities. We invited adult partners to complete a pre-exome survey, attend annual family forums, and participate in other inter-family interaction opportunities. Results: Of the 385 adults enrolled, 79\% opted for ``partnership'' with the research team. Nearly all (99.2\%) participants opted to receive research results pertaining to their children's primary conditions. A majority indicated the desire to receive additional clinically relevant outside the scope of their children's conditions (92.7\%) and an interest in non-clinically relevant genetic information (82.7\%). Conclusions: Most participants chose partnership, including its rights and potential burdens; however, active engagement in study activities remained the exception. Not surprisingly, the overwhelming majority of participants---both partners and traditional---expected to receive all genetic information resulting from the research study. ",
doi="10.2196/jopm.8958",
url="http://jopm.jmir.org/2018/1/e2/"
}