Journal of Participatory Medicine最新文献

{"title":"From English to \"Englishes\": A Process Perspective on Enhancing the Linguistic Responsiveness of Culturally Tailored Cancer Prevention Interventions.","authors":"Alexis Davis, Joshua Martin, Eric Cooks, Melissa Vilaro, Danyell Wilson-Howard, Kevin Tang, Janice Raup Krieger","doi":"10.2196/57528","DOIUrl":"10.2196/57528","url":null,"abstract":"<p><p>Linguistic accommodation refers to the process of adjusting one's language, speech, or communication style to match or adapt to that of others in a social interaction. It is known to be vital to effective health communication. Despite this evidence, there is little scientific guidance on how to design linguistically adapted health behavior interventions for diverse English-speaking populations. This study aims to document the strategies used to develop a culturally grounded cancer prevention intervention with the capabilities to linguistically accommodate to speakers of African American English (AAE). We describe the iterative process of developing a cancer prevention intervention with contributions of racially and linguistically diverse colleagues representing various community and institutional perspectives, including communication scientists, linguists, a community advisory board, professional voice talents, and institutional representatives for scientific integrity. We offer a detailed description of the successes and, in some cases, failures of strategies. Social stereotypes associated with AAE were prevalent at both institutional and community levels, resulting in unanticipated challenges and delays during intervention development. The diversity of linguistic, racial, and role identities within the message development team was integral to successfully addressing and identifying opportunities for process improvement. Language is a vital but often overlooked aspect of intervention development. Message designers should consider implicit social stereotypes that unintentionally shape linguistic choices. This study provides a novel overview of how various types of expertise and iterative message development processes contribute to successfully navigating cultural grounding when sensitive or stigmatized issues are salient.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"16 ","pages":"e57528"},"PeriodicalIF":0.0,"publicationDate":"2024-12-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11695973/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142865445","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Developing a Digital Tool to Calculate Protein Quality in Plant-Based Meals of Older Adults: User Engagement Design Approach With End Users.","authors":"Lotte van Dam, Sine Højlund Christensen, Inge Tetens, William Riley Iii, Mariëlle Timmer, George Suciu, Iuliana Marin, Lisette De Groot, Pol Grootswagers","doi":"10.2196/48323","DOIUrl":"10.2196/48323","url":null,"abstract":"<p><strong>Background: </strong>The global shift toward plant-based diets has been increasing, with more people making the transition for various reasons. In vulnerable subgroups such as older adults, the transition to plant-based diets deserves attention due to the potentially detrimental consequences of lower protein quantity and quality.</p><p><strong>Objective: </strong>We aimed to develop a digital tool that ensures adequate protein quality in plant-based meals for older adults experiencing low protein intake through an interdisciplinary collaboration and user engagement with potential end users.</p><p><strong>Methods: </strong>Three focus group interviews of Dutch and Danish dietitians and older adults as potential end users were conducted to identify their needs, preferences, and deal-breakers. Focus group interviews were based on a user-task-environment analysis, the Walt Disney method, the brainwriting method, and a cognitive walkthrough. The interview transcripts were analyzed with a thematic analysis. The front end and backend development of a potential tool took place in parallel and was well-synced to the focus group interviews.</p><p><strong>Results: </strong>Both dietitians and older adults from Dutch and Danish sites expressed high interest in a tool that provides feedback and background information on protein quality, sustainability, and nutrients or micronutrients. The user-task-environment analysis delivered input among others that dietitians and older adults are good potential users, the tool should be functional as an app as well as a website and the tool should provide preprogrammed meals or recipes. The Walt Disney method delivered usable and realistic solutions to the 4 challenges presented. Thirty-two percent of the solutions on all themes presented with the brainwriting method appeared to be highly feasible and relevant, having the potential to be implemented in a tool. The cognitive walkthrough identified certain screens as unclear, necessitating revisions for improved understandability, for example, the need for explanation in selecting food item filters is shown in screenshot 2, with an overall usability score of 59%.</p><p><strong>Conclusions: </strong>Our user engagement design approach resulted in a prototype that ensured end users' wishes and needs, with a finetuned output tested in focus groups. We conclude that our user engagement design approach was a suitable and meaningful stepwise approach to ensure the relevance of the tool and identify potential barriers. The focus group results indicate that dietitians have a clear understanding and need for a tool to aid in meal planning for enhanced protein quality, highlighting its absence in their current resources despite increasing demands arising from the protein transition. Conversely, for older adults, the introduction of a digital tool appears less appropriate; instead, there is a necessity for foundational education on protein quality before such a tool can be ","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"16 ","pages":"e48323"},"PeriodicalIF":0.0,"publicationDate":"2024-12-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11695958/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142865438","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A Practical Guide to Participatory Design Sessions for the Development of Information Visualizations: Tutorial.","authors":"Adriana Arcia, Samantha Stonbraker, Sabrina Mangal, Maichou Lor","doi":"10.2196/64508","DOIUrl":"10.2196/64508","url":null,"abstract":"<p><strong>Unlabelled: </strong>Participatory design is an increasingly common informatics method to engage intended audiences in the development of health-related resources. Participatory design is particularly helpful for developing information visualizations that aim to improve health outcomes by means of improved comprehension, communication or engagement, and subsequent behavior changes. Existing literature on participatory design lacks the practical details that influence the success of the method and does not address emergent issues, such as strategies to enhance internet-based data collection. In this tutorial, our objective is to provide practical guidance on how to prepare for, conduct, and analyze participatory design sessions for information visualization. The primary audience for this tutorial is research teams, but this guide is relevant for organizations and other health professionals looking to design visualizations for their patient populations, as they can use this guide as a procedural manual. This start-to-finish guide provides information on how to prepare for design sessions by setting objectives and applying theoretical foundations, planning design sessions to match project goals, conducting design sessions in different formats with varying populations, and carrying out effective analysis. We also address how the methods in this guide can be implemented in the context of resource constraints. This tutorial contains a glossary of relevant terms, pros and cons of variations in the type of design session, an informed consent template, a preparation checklist, a sample design session guide and selection of useful design session prompts, and examples of how surveys can supplement the design process.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"16 ","pages":"e64508"},"PeriodicalIF":0.0,"publicationDate":"2024-12-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11661693/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142822675","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Self-Induced Mania Methods and Motivations Reported in Online Forums: Observational Qualitative Study.","authors":"Emmanuelle Cs Bostock, Adriana G Nevarez-Flores, Amanda L Neil, Halley M Pontes, Kenneth C Kirkby","doi":"10.2196/56970","DOIUrl":"10.2196/56970","url":null,"abstract":"<p><strong>Background: </strong>In bipolar disorder (BD), mania may be self-induced by manipulation of specific precipitants, as reported in case studies. Another potential source of information on the self-induction of mania is the online postings of users with lived experience of mania.</p><p><strong>Objective: </strong>The primary aim of this study is to examine the range of methods used to self-induce mania or hypomania described by users of online forums with self-reported BD. Second, we summarize the motivations of users to engage in these behaviors.</p><p><strong>Methods: </strong>We conducted an observational study of online forum posts that discussed self-induction of mania or hypomania, either in the posters themselves or observed firsthand in others. Posts were identified using Google advanced search operators, then extracted and coded for content in NVivo (version 12 for Mac; QSR International). A total of 44 online forum threads were identified discussing self-induced mania (n=25) or hypomania (n=19). These forums contained 585 posts by 405 usernames, of which 126 usernames discussed methods for self-induction across 327 posts (number of methods per username: median 2, IQR 1-4; range 1-11).</p><p><strong>Results: </strong>In total, 36 methods were grouped by the authors. The most frequently reported were sleep reduction (n=50), caffeine (n=37), and cessation of medication (n=27). Twenty-six usernames reported their motivation to self-induce mania or hypomania; almost three-quarters (n=19) reported a desire to end a depressive episode. Almost a third of usernames (118/405) explicitly discouraged other forum users from self-inducing mania or hypomania.</p><p><strong>Conclusions: </strong>Online forums provide an additional and valuable source of information about triggers for mania that may inform relapse prevention in BD. The online forum conversations investigated were generally responsible and included cautionary advice not to pursue these methods.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"16 ","pages":"e56970"},"PeriodicalIF":0.0,"publicationDate":"2024-12-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11662181/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142789685","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Implementing a Patient Portal for the Remote Follow-Up of Self-Isolating Patients With COVID-19 Infection Through Patient and Stakeholder Engagement (the Opal-COVID Study): Mixed Methods Pilot Study.","authors":"Yuanchao Ma, David Lessard, Serge Vicente, Kim Engler, Adriana Rodriguez Cruz, Moustafa Laymouna, Tarek Hijal, Lina Del Balso, Guillaume Thériault, Nathalie Paisible, Nadine Kronfli, Marie-Pascale Pomey, Hansi Peiris, Sapha Barkati, Marie-Josée Brouillette, Marina Klein, Joseph Cox, Alexandra de Pokomandy, Jamil Asselah, Susan J Bartlett, Bertrand Lebouché","doi":"10.2196/48194","DOIUrl":"10.2196/48194","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;The COVID-19 pandemic was an unprecedent challenge to public health systems, with 95% of cases in Quebec sent home for self-isolation. To ensure continuous care, we implemented an intervention supported by a patient portal (Opal) to remotely monitor at-home patients with COVID-19 via daily self-reports of symptoms, vital signs, and mental health that were reviewed by health care professionals.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;We describe the intervention's implementation, focusing on the (1) process; (2) outcomes, including feasibility, fidelity, acceptability, usability, and perceived response burden; and (3) barriers and facilitators encountered by stakeholders.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;The implementation followed a co-design approach operationalized through patient and stakeholder engagement. The intervention included a 14-day follow-up for each patient. In the mixed methods study at the McGill University Health Centre in Montreal, Quebec, participants completed questionnaires on implementation outcomes on days 1, 7, and 14. All scores were examined against predefined success thresholds. Linear mixed models and generalized estimating equations were used to assess changes in scores over time and whether they differed by sex, age, and race. Semistructured interviews were conducted with expert patients, health care professionals, and coordinators for the qualitative analysis and submitted to thematic analysis guided by the Consolidated Framework for Implementation Research.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;In total, 51 participants were enrolled between December 2020 and March 2021; 49 (96%) were included in the quantitative analysis. Observed recruitment and retention rates (51/52, 98% and 49/51, 96%) met the 75% feasibility success threshold. Over 80% of the participants found it \"quite easy/very easy\" to complete the daily self-report, with a completion rate (fidelity) of &gt;75% and a nonsignificant decreasing trend over time (from 100%, 49/49 to 82%, 40/49; P=.21). Mean acceptability and usability scores at all time points exceeded the threshold of 4 out of 5. Acceptability scores increased significantly between at least 2 time points (days 1, 7, and 14: mean 4.06, SD 0.57; mean 4.26, SD 0.59; and mean 4.25, SD 0.57; P=.04). Participants aged &gt;50 years reported significantly lower mean ease of use (usability) scores than younger participants (days 1, 7, and 14: mean 4.29, SD 0.91 vs mean 4.67, SD 0.45; mean 4.13, SD 0.89 vs mean 4.77, SD 0.35; and mean 4.24, SD 0.71 vs mean 4.72, SD 0.71; P=.004). In total, 28 stakeholders were interviewed between June and September 2021. Facilitators included a structured implementation process, a focus on stakeholders' recommendations, the adjustability of the intervention, and the team's emphasis on safety. However, Opal's thorough privacy protection measures and limited acute follow-up capacities were identified as barriers, along with implementation delays due to data","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"16 ","pages":"e48194"},"PeriodicalIF":0.0,"publicationDate":"2024-12-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11656113/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142781420","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"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.","authors":"Claudia Lucrecia Calderon Ramirez, Yanick Farmer, James Downar, Andrea Frolic, Lucie Opatrny, Diane Poirier, Gina Bravo, Audrey L'Espérance, Nathalie Gaucher, Antoine Payot, Joseph Dahine, Peter Tanuseputro, Louis-Martin Rousseau, Vincent Dumez, Annie Descôteaux, Clara Dallaire, Karell Laporte, Marie-Eve Bouthillier","doi":"10.2196/54841","DOIUrl":"10.2196/54841","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Objective: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"16 ","pages":"e54841"},"PeriodicalIF":0.0,"publicationDate":"2024-11-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11589492/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142629957","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Understanding the Values, Qualities, and Preferences of Patients in Their Relationships With Obstetrics and Gynecology Providers: Cross-Sectional Survey With a Mixed Methods Approach.","authors":"Ann Blair Kennedy, Anna Tarasidis Harb, Chloe Schockling, Lauren Jackson Ray, Jennifer Palomo, Rebecca Russ-Sellers","doi":"10.2196/58096","DOIUrl":"10.2196/58096","url":null,"abstract":"<p><strong>Background: </strong>The patient-provider relationship in obstetrics and gynecology (OBGYN) is uniquely complex due to the sensitive nature of examinations and topics. Patients often prefer health care providers who share similar racial, ethnic, gender, or linguistic backgrounds, particularly in sensitive health care situations, to improve communication and comfort, though historically, specific gender preferences for OBGYNs have not been evident.</p><p><strong>Objective: </strong>This study aims to describe the values, qualities, and preferences of patients in their relationships with OBGYN providers.</p><p><strong>Methods: </strong>This cross-sectional survey, conducted from October 2019 to December 2019, involved 1039 US OBGYN patients and used a mixed methods approach, integrating quantitative responses and qualitative insights from open-ended questions. Recruitment was facilitated through targeted social media campaigns, and the survey aimed to capture detailed patient preferences and barriers to care by assessing responses on provider traits, patient experiences, and demographic factors. The study's rigorous data collection and analysis were designed to fill gaps identified in previous research on patient-provider relationships in OBGYN care.</p><p><strong>Results: </strong>The findings underscore the paramount importance of trust and comfort, with listening skills identified as crucial. A notable finding is the marked preference for same-gender providers, observed in 80.7% (545/675) of participants. Primary barriers to seeking care reported included daily commitments, highlighting the need for accessible and flexible care options.</p><p><strong>Conclusions: </strong>The study highlights a significant shift from previous scientific findings in patient preferences toward gender concordance and trust in OBGYN settings, diverging from previous research. These results emphasize the need for patient-centered care and tailored communication strategies to enhance patient experiences and outcomes. Future research should focus on diverse populations to broaden the findings' applicability and explore the impact of recent shifts in health care policies.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"16 ","pages":"e58096"},"PeriodicalIF":0.0,"publicationDate":"2024-10-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11525076/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142476682","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Implementation of a Recovery College Embedded in a Swedish Psychiatry Organization: Qualitative Case Study.","authors":"Lina Al-Adili, Moa Malmqvist, Maria Reinius, Inka Helispää Rodriguez, Terese Stenfors, Mats Brommels","doi":"10.2196/55882","DOIUrl":"10.2196/55882","url":null,"abstract":"<p><strong>Background: </strong>Recovery colleges are service user-led educational interventions aiming at empowering people with mental health issues and promoting recovery through peer learning. Despite the increasing interest in recovery colleges in recent years and the demonstrated beneficial effects for users, there is limited research addressing aspects that influence their implementation. This knowledge is necessary for the successful integration of such interventions in various contexts.</p><p><strong>Objective: </strong>This study aims to explore factors that influence the implementation of a recovery college embedded within a Swedish psychiatry organization.</p><p><strong>Methods: </strong>A qualitative case study of a recovery college based on semistructured interviews with 8 course participants, 4 course leaders, and 4 clinical staff was conducted. The transcripts were scrutinized with conventional content analysis, and the interpretation of results was guided by the Consolidated Framework for Implementation Research.</p><p><strong>Results: </strong>The findings highlight key areas that either hinder or promote the successful implementation of the recovery college. These areas included recruitment, resources, staff attitudes, and ways of organizing courses. Each area has elements that appear both as facilitators and barriers, demonstrating the duality of conditions.</p><p><strong>Conclusions: </strong>Allocating dedicated resources, engaging individuals with service user experience as organizers who are willing to share their personal experience, having an open-door policy, creating an open space for participants to share their experiences, and offering practical advice and written material are useful to create favorable conditions for a recovery college to reach its goals of empowering psychiatry service users.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"16 ","pages":"e55882"},"PeriodicalIF":0.0,"publicationDate":"2024-09-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11427861/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142297381","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Public Involvement and Engagement in Big Data Research: Scoping Review.","authors":"Piotr Teodorowski, Elisa Jones, Naheed Tahir, Saiqa Ahmed, Sarah E Rodgers, Lucy Frith","doi":"10.2196/56673","DOIUrl":"10.2196/56673","url":null,"abstract":"<p><strong>Background: </strong>The success of big data initiatives depends on public support. Public involvement and engagement could be a way of establishing public support for big data research.</p><p><strong>Objective: </strong>This review aims to synthesize the evidence on public involvement and engagement in big data research.</p><p><strong>Methods: </strong>This scoping review mapped the current evidence on public involvement and engagement activities in big data research. We searched 5 electronic databases, followed by additional manual searches of Google Scholar and gray literature. In total, 2 public contributors were involved at all stages of the review.</p><p><strong>Results: </strong>A total of 53 papers were included in the scoping review. The review showed the ways in which the public could be involved and engaged in big data research. The papers discussed a broad range of involvement activities, who could be involved or engaged, and the importance of the context in which public involvement and engagement occur. The findings show how public involvement, engagement, and consultation could be delivered in big data research. Furthermore, the review provides examples of potential outcomes that were produced by involving and engaging the public in big data research.</p><p><strong>Conclusions: </strong>This review provides an overview of the current evidence on public involvement and engagement in big data research. While the evidence is mostly derived from discussion papers, it is still valuable in illustrating how public involvement and engagement in big data research can be implemented and what outcomes they may yield. Further research and evaluation of public involvement and engagement in big data research are needed to better understand how to effectively involve and engage the public in big data research.</p><p><strong>International registered report identifier (irrid): </strong>RR2-https://doi.org/10.1136/bmjopen-2021-050167.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"16 ","pages":"e56673"},"PeriodicalIF":0.0,"publicationDate":"2024-08-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11364952/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141989101","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Shifting Grounds-Facilitating Self-Care in Testing for Sexually Transmitted Infections Through the Use of Self-Test Technology: Qualitative Study.","authors":"Bettina Trettin, Mette Maria Skjøth, Nadja Trier Munk, Tine Vestergaard, Charlotte Nielsen","doi":"10.2196/55705","DOIUrl":"10.2196/55705","url":null,"abstract":"<p><strong>Background: </strong>Chlamydia remains prevalent worldwide and is considered a global public health problem. However, testing rates among young sexually active people remain low. Effective clinical management relies on screening asymptomatic patients. However, attending face-to-face consultations of testing for sexually transmitted infections is associated with stigmatization and anxiety. Self-testing technology (STT) allows patients to test themselves for chlamydia and gonorrhea without the presence of health care professionals. This may result in wider access to testing and increase testing uptake. Therefore, the sexual health clinic at Odense University Hospital has designed and developed a technology that allows patients to get tested at the clinic through self-collected sampling without a face-to-face consultation.</p><p><strong>Objective: </strong>This study aimed to (1) pilot-test STT used in clinical practice and (2) investigate the experiences of patients who have completed a self-test for chlamydia and gonorrhea.</p><p><strong>Methods: </strong>The study was conducted as a qualitative study inspired by the methodology of participatory design. Ethnographic methods were applied in the feasibility study and the data analyzed were inspired by the action research spiral in iterative processes using steps, such as plan, act, observe, and reflect. The qualitative evaluation study used semistructured interviews and data were analyzed using a qualitative 3-level analytical model.</p><p><strong>Results: </strong>The findings from the feasibility study, such as lack of signposting and adequate information, led to the final modifications of the self-test technology and made it possible to implement it in clinical practice. The qualitative evaluation study found that self-testing was seen as more appealing than testing at a face-to-face consultation because it was an easy solution that both saved time and allowed for the freedom to plan the visit independently. Security was experienced when the instructions balanced between being detail-oriented while also being simple and illustrative. The anonymity and discretion contributed to preserving privacy and removed the fear of an awkward conversation or being judged by health care professionals thus leading to the reduction of intrusive feelings.</p><p><strong>Conclusions: </strong>Accessible health care services are crucial in preventing and reducing the impact of sexually transmitted infections and STT may have the potential to increase testing uptake as it takes into account some of the barriers that exist. The pilot test and evaluation have resulted in a fully functioning implementation of STT in clinical practice.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"16 ","pages":"e55705"},"PeriodicalIF":0.0,"publicationDate":"2024-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11358652/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141983444","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}