Journal of Participatory Medicine最新文献

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Co-design of the Transgender Health Information Resource: Web-Based Participatory Design. 共同设计变性人健康信息资源:基于网络的参与式设计。
Journal of Participatory Medicine Pub Date : 2023-01-10 DOI: 10.2196/38078
Brad Morse, Andrey Soares, Kate Ytell, Kristen DeSanto, Marvyn Allen, Brooke Dorsey Holliman, Rita S Lee, Bethany M Kwan, Lisa M Schilling
{"title":"Co-design of the Transgender Health Information Resource: Web-Based Participatory Design.","authors":"Brad Morse, Andrey Soares, Kate Ytell, Kristen DeSanto, Marvyn Allen, Brooke Dorsey Holliman, Rita S Lee, Bethany M Kwan, Lisa M Schilling","doi":"10.2196/38078","DOIUrl":"10.2196/38078","url":null,"abstract":"<p><strong>Background: </strong>There is an urgent and unmet need for accessible and credible health information within the transgender and gender-diverse (TGD) community. Currently, TGD individuals often seek and must find relevant resources by vetting social media posts. A resource that provides accessible and credible health-related resources and content via a mobile phone app may have a positive impact on and support the TGD population.</p><p><strong>Objective: </strong>COVID-19 stay-at-home orders forced a shift in the methods used in participatory design. In this paper, we aimed to describe the web-based participatory methods used to develop the Transgender Health Information Resource. We also described and characterized the web-based engagement that occurred during a single session of the overall design process.</p><p><strong>Methods: </strong>We planned and conducted web-based design sessions to replace the proposed in-person sessions. We used web-based collaborative tools, including Zoom (Zoom Video Communications), Mural (Mural), REDCap (Research Electronic Data Capture; Vanderbilt University), and Justinmind (Justinmind), to engage the participants in the design process. Zoom was used as an integrated platform for design activities. Mural was used to perform exercises, such as free listing, brainstorming, and grouping. REDCap allowed us to collect survey responses. Justinmind was used to create prototypes that were shared and discussed via Zoom. Recruitment was led by one of our community partners, One Colorado, who used private Facebook groups in which web-based flyers were dispersed. The design process took place in several workshops over a period of 10 months. We described and characterized engagement during a single design session by tracking the number of influential interactions among participants. We defined an influential interaction as communication, either verbal or web-based content manipulation, that advanced the design process.</p><p><strong>Results: </strong>We presented data from a single design session that lasted 1 hour and 48 minutes and included 4 participants. During the session, there were 301 influential interactions, consisting of 79 verbal comments and 222 web-based content manipulations.</p><p><strong>Conclusions: </strong>Web-based participatory design can elicit input and decisions from participants to develop a health information resource, such as a mobile app user interface. Overall, participants were highly engaged. This approach maintained the benefits and fidelity of traditional in-person design sessions, mitigated deficits, and exploited the previously unconsidered benefits of web-based methods, such as enhancing the ability to participate for those who live far from academic institutions. The web-based approach to participatory design was an efficient and feasible methodological design approach.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"15 ","pages":"e38078"},"PeriodicalIF":0.0,"publicationDate":"2023-01-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9874991/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10329069","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}
引用次数: 0
Meeting the Burden of Self-management: Qualitative Study Investigating the Empowering Behaviors of Patients and Informal Caregivers. 面对自我管理的负担:调查病患与非正式照护者授权行为的质性研究。
Journal of Participatory Medicine Pub Date : 2022-11-16 DOI: 10.2196/39174
Therese Scott Duncan, Jon Engström, Sara Riggare, Maria Hägglund, Sabine Koch
{"title":"Meeting the Burden of Self-management: Qualitative Study Investigating the Empowering Behaviors of Patients and Informal Caregivers.","authors":"Therese Scott Duncan,&nbsp;Jon Engström,&nbsp;Sara Riggare,&nbsp;Maria Hägglund,&nbsp;Sabine Koch","doi":"10.2196/39174","DOIUrl":"https://doi.org/10.2196/39174","url":null,"abstract":"<p><strong>Background: </strong>Patient empowerment is an important concept and a movement toward person-centered care of patients with chronic conditions. Nevertheless, to date, most research on empowered patients or informal caregivers has been conducted from a narrow clinical perspective. Such research has mainly focused on how health care professionals can empower patients to increase self-care or compliance with treatment. Research on empowered patient and informal caregiver needs and self-empowering activities is scarce.</p><p><strong>Objective: </strong>We aimed to explore empowering behaviors from a patient and informal caregiver perspective in the context of self-management and to understand how health care can support such behaviors better.</p><p><strong>Methods: </strong>We used an exploratory, qualitative study design. A total of 15 semistructured interviews and 6 focus group interviews were conducted with 48 patients and informal caregivers. We analyzed the interviews using thematic analysis and used a directed content analysis to analyze the focus group interviews.</p><p><strong>Results: </strong>A total of 14 patterns of empowering behaviors were identified that were characterized by several exploratory and influencing activities performed by the participants. The participants expressed a desire to be more active in their care than what is expected and supported by health care professionals. The participants also desired better support for activities imposed on them by health care professionals.</p><p><strong>Conclusions: </strong>To enable a transformation of the health care system to better support self-empowering behaviors, there is a need to develop self-management approaches from a patient and informal caregiver perspective.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":" ","pages":"e39174"},"PeriodicalIF":0.0,"publicationDate":"2022-11-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9713617/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40490551","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}
引用次数: 2
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. 从个人到系统和对创造的贡献:通过召集健康和卫生保健中心来绘制个人努力的新框架。
Journal of Participatory Medicine Pub Date : 2022-11-03 DOI: 10.2196/39339
Dana Lewis, Liz Salmi, Alicia Staley, John Harlow
{"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.","authors":"Dana Lewis,&nbsp;Liz Salmi,&nbsp;Alicia Staley,&nbsp;John Harlow","doi":"10.2196/39339","DOIUrl":"https://doi.org/10.2196/39339","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Objective: </strong>Convening The Center aimed to bring together \"people known as patients\"-the center of health care-to address priorities as they defined them.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":" ","pages":"e39339"},"PeriodicalIF":0.0,"publicationDate":"2022-11-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9672994/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40442214","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}
引用次数: 1
Text Messages to Support Caregivers in a Health Care System: Development and Pilot and National Rollout Evaluation. 在卫生保健系统中支持护理人员的短信:发展、试点和全国推广评估。
Journal of Participatory Medicine Pub Date : 2022-10-17 DOI: 10.2196/35318
Jennifer Lynn Martindale-Adams, Carolyn Davis Clark, Jessica Roxy Martin, Charles Richard Henderson, Linda Olivia Nichols
{"title":"Text Messages to Support Caregivers in a Health Care System: Development and Pilot and National Rollout Evaluation.","authors":"Jennifer Lynn Martindale-Adams,&nbsp;Carolyn Davis Clark,&nbsp;Jessica Roxy Martin,&nbsp;Charles Richard Henderson,&nbsp;Linda Olivia Nichols","doi":"10.2196/35318","DOIUrl":"https://doi.org/10.2196/35318","url":null,"abstract":"<p><strong>Background: </strong>Although there are many interventions to support caregivers, SMS text messaging has not been used widely.</p><p><strong>Objective: </strong>In this paper, we aimed to describe development of the Department of Veterans Affairs (VA) Annie Stress Management SMS text messaging protocol for caregivers of veterans, its pilot test, and subsequent national rollout.</p><p><strong>Methods: </strong>The stress management protocol was developed with text messages focusing on education, motivation, and stress-alleviating activities based on the Resources for Enhancing All Caregivers Health (REACH) VA caregiver intervention. This protocol was then tested in a pilot study. On the basis of the pilot study results, a national rollout of the protocol was executed and evaluated. Caregivers were referred from VA facilities nationally for the pilot and national rollout. Pilot caregivers were interviewed by telephone; national rollout caregivers were sent a web-based evaluation link at 6 months. For both evaluations, questions were scored on a Likert scale ranging from completely disagree to completely agree. For both the pilot and national rollout, quantitative data were analyzed with frequencies and means; themes were identified from open-ended qualitative responses.</p><p><strong>Results: </strong>Of the 22 caregivers in the pilot study, 18 (82%) provided follow-up data. On a 5-point scale, they reported text messages had been useful in managing stress (mean score 3.8, SD 1.1), helping them take care of themselves (mean score 3.7, SD 1.3), and making them feel cared for (mean score 4.1, SD 1.7). Texts were easy to read (mean score 4.5, SD 1.2), did not come at awkward times (mean score 2.2, SD 1.4), were not confusing (mean score 1.1, SD 0.2), and did not cause problems in responding (mean score 1.9, 1.1); however, 83% (15/18) of caregivers did not want to request an activity when stressed. Consequently, the national protocol did not require caregivers to respond. In the national rollout, 22.17% (781/3522) of the eligible caregivers answered the web-based survey and reported that the messages had been useful in managing stress (mean score 4.3, SD 0.8), helping them take care of themselves (mean score 4.3, SD 0.8) and loved ones (mean score 4.2, SD 0.8), and making them feel cared for (mean score 4.5, SD 0.8). Almost two-thirds (509/778, 65.4%) of the participants tried all or most of the strategies. A total of 5 themes were identified. The messages were appreciated, helped with self-care, and made them feel less alone, looking on Annie as a friend. The caregivers reported that the messages were on target and came when they were most needed and did not want them to stop. This success has led to four additional caregiver texting protocols: bereavement, dementia behaviors and stress management, (posttraumatic stress disorder) PTSD behaviors, and taking care of you, with 7274 caregivers enrolled as of February 2022.</p><p><strong>Conclus","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"14 1","pages":"e35318"},"PeriodicalIF":0.0,"publicationDate":"2022-10-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9623465/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"33518878","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}
引用次数: 1
A Health Equity-Oriented Research Agenda Requires Comprehensive Community Engagement. 以卫生公平为导向的研究议程需要全面的社区参与。
Journal of Participatory Medicine Pub Date : 2022-09-30 DOI: 10.2196/37657
Kevin Rice, Joshua Seidman, Oneil Mahoney
{"title":"A Health Equity-Oriented Research Agenda Requires Comprehensive Community Engagement.","authors":"Kevin Rice,&nbsp;Joshua Seidman,&nbsp;Oneil Mahoney","doi":"10.2196/37657","DOIUrl":"https://doi.org/10.2196/37657","url":null,"abstract":"<p><p>Health policy and research communities have taken new approaches to addressing health equity, going beyond traditional methods that often excluded the contributions of health care consumers and persons with lived experience. This reevaluation has the potential to drive critical improvements in how we conduct research and innovate policy toward reducing health and health care disparities in the United States. Such considerations have led Fountain House, the founder of the Clubhouse model for peer-based psychosocial rehabilitation for persons with histories of serious mental illness, to incorporate community-based participatory action research (CBPAR) protocols within their research and service programs. The combination of CBPAR research methods within novel participatory care settings like Clubhouse programs presents unique and informative opportunities for the advancement of innovative health equity approaches to consumer empowerment in health care. In this piece, the authors (two staff researchers and one member researcher) propose how CBPAR research methods conducted in Clubhouses can uniquely advance equity-focused research methods, and how the benefit and enhancements from equity-focused research are continuously applied, practiced, and accountable to the communities within which the research is conducted. Embedding CBPAR practices within participatory care settings like Clubhouses, creates novel opportunities for research work to not only become more equitable but also become a part of the rehabilitative process, empowering the main beneficiaries of the research with the means to sustain and achieve further improvements for themselves. Such experiences are particularly important within rehabilitation settings, where there is a process of reclaiming empowerment and self-efficacy over a disability or illness and the social circumstances surrounding those conditions. Different stakeholders can all play important roles in advancing health equity-oriented research agendas by leveraging CBPAR principles. Academics and others in the research community can more comprehensively embed CBPAR methods into the design of their research studies. A critical link exists among how researchers conduct their studies, how providers organize care delivery and support, and how health plans pay for and evaluate care. CBPAR-generated research needs to fully engage clinical teams to ensure that ongoing community-involved care settings have direct applications to real-world care delivery. It is equally important that providers fully engage with their communities as they adjust their approaches to supporting the populations they serve.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":" ","pages":"e37657"},"PeriodicalIF":0.0,"publicationDate":"2022-09-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9568816/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40385885","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}
引用次数: 0
Evaluating a Global Assessment Measure Created by Standardized Patients for the Multiple Mini Interview in Medical School Admissions: Mixed Methods Study. 评估由标准化患者为医学院入学考试中的多重小型面试创建的全球评估量表:混合方法研究。
Journal of Participatory Medicine Pub Date : 2022-08-30 DOI: 10.2196/38209
Ann Blair Kennedy, Cindy Nessim Youssef Riyad, Ryan Ellis, Perry R Fleming, Mallorie Gainey, Kara Templeton, Anna Nourse, Virginia Hardaway, April Brown, Pam Evans, Nabil Natafgi
{"title":"Evaluating a Global Assessment Measure Created by Standardized Patients for the Multiple Mini Interview in Medical School Admissions: Mixed Methods Study.","authors":"Ann Blair Kennedy, Cindy Nessim Youssef Riyad, Ryan Ellis, Perry R Fleming, Mallorie Gainey, Kara Templeton, Anna Nourse, Virginia Hardaway, April Brown, Pam Evans, Nabil Natafgi","doi":"10.2196/38209","DOIUrl":"10.2196/38209","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Objective: </strong>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.</p><p><strong>Methods: </strong>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 α test, and its prediction of admission status was tested using a forward stepwise binary logistic regression.</p><p><strong>Results: </strong>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 α'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% (R<sup>2</sup>) 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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"14 1","pages":"e38209"},"PeriodicalIF":0.0,"publicationDate":"2022-08-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9472042/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"33447291","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}
引用次数: 0
Moving to Personalized Medicine Requires Personalized Health Plans. 向个性化医疗转变需要个性化的健康计划。
Journal of Participatory Medicine Pub Date : 2022-08-04 DOI: 10.2196/35798
Adam Powell, Paul Dolan
{"title":"Moving to Personalized Medicine Requires Personalized Health Plans.","authors":"Adam Powell,&nbsp;Paul Dolan","doi":"10.2196/35798","DOIUrl":"https://doi.org/10.2196/35798","url":null,"abstract":"<p><p>When individuals, families, and employers select health plans in the United States, they are typically only shown the financial structure of the plans and their provider networks. This variation in financial structure can lead patients to have health plans aligned with their financial needs, but not with their underlying nonfinancial preferences. Compounding the challenge is the fact that managed care organizations have historically used a combination of population-level budget impact models, cost-effectiveness analyses, medical necessity criteria, and current medical consensus to make coverage decisions. This approach to creating and presenting health plan options does not consider heterogeneity in patient and family preferences and values, as it treats populations as uniform. Similarly, it does not consider that there are some situations in which patients are price-insensitive. We seek to highlight the challenges posed by presenting health plans to patients in strictly financial terms, and to call for more consideration of nonfinancial patient preferences in the health plan design and selection process.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":" ","pages":"e35798"},"PeriodicalIF":0.0,"publicationDate":"2022-08-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9389374/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40680814","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}
引用次数: 0
Co-designing Improved Communication of Newborn Bloodspot Screening Results to Parents: Mixed Methods Study. 共同设计改善新生儿血斑筛查结果与父母的沟通:混合方法研究。
Journal of Participatory Medicine Pub Date : 2022-07-27 DOI: 10.2196/33485
Jane Chudleigh, Lynette Shakespeare, Pru Holder, Holly Chinnery, Gemma Hack, Tanya Gill, Rachel Gould, Kevin W Southern, Ellinor K Olander, Stephen Morris, James R Bonham, Alan Simpson, Louise Moody
{"title":"Co-designing Improved Communication of Newborn Bloodspot Screening Results to Parents: Mixed Methods Study.","authors":"Jane Chudleigh,&nbsp;Lynette Shakespeare,&nbsp;Pru Holder,&nbsp;Holly Chinnery,&nbsp;Gemma Hack,&nbsp;Tanya Gill,&nbsp;Rachel Gould,&nbsp;Kevin W Southern,&nbsp;Ellinor K Olander,&nbsp;Stephen Morris,&nbsp;James R Bonham,&nbsp;Alan Simpson,&nbsp;Louise Moody","doi":"10.2196/33485","DOIUrl":"https://doi.org/10.2196/33485","url":null,"abstract":"<p><strong>Background: </strong>Each year in England, almost 10,000 parents are informed of their child's positive newborn bloodspot screening (NBS) results. This occurs approximately 2 to 8 weeks after birth depending on the condition. Communication of positive NBS results is a subtle and skillful task, demanding thought, preparation, and evidence to minimize potentially harmful negative sequelae. Evidence of variability in the content and the way the result is currently communicated has the potential to lead to increased parental anxiety and distress.</p><p><strong>Objective: </strong>This study focused on the development of co-designed interventions to improve the experiences of parents receiving positive NBS results for their children and enhance communication between health care professionals and parents.</p><p><strong>Methods: </strong>An experience-based co-design approach was used to explore experiences and co-design solutions with 17 health professionals employed in 3 National Health Service Trusts in England and 21 parents (13/21, 62% mothers and 8/21, 38% fathers) of 14 children recruited from the same 3 National Health Service Trusts. Experiences with existing services were gathered via semistructured interviews with health professionals. Filmed narrative interviews with parents were developed into a composite film. The co-design process identified priorities for improving communication of positive NBS results through separate parent and health professional feedback events followed by joint feedback events. In total, 4 interventions were then co-designed between the participants through a web-based platform.</p><p><strong>Results: </strong>Parents and health professionals provided positive feedback regarding the process of gathering experiences and identifying priorities. Themes identified from the parent interviews included impact of initial communication, parental reactions, attending the first clinic appointment, impact of health professionals' communication strategies and skills, impact of diagnosis on family and friends, improvements to the communication of positive NBS results, and parents' views on NBS. Themes identified from the health professional interviews included communication between health professionals, process of communicating with the family, parent- and family-centered care, and availability of resources and challenges to effective communication. In response to these themes, 4 interventions were co-designed: changes to the NBS card; standardized laboratory proformas; standardized communication checklists; and an email or letter for providing reliable, up-to-date, condition-specific information for parents following the communication of positive NBS results.</p><p><strong>Conclusions: </strong>Parents and health professionals were able to successfully work together to identify priorities and develop co-designed interventions to improve communication of positive NBS results to parents. The resulting co-designed interv","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":" ","pages":"e33485"},"PeriodicalIF":0.0,"publicationDate":"2022-07-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9377474/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40566696","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}
引用次数: 3
In Anticipation of Sharing Pediatric Inpatient Notes: Focus Group Study With Stakeholders 在期待分享儿科住院病人笔记:焦点小组研究与利益相关者
Journal of Participatory Medicine Pub Date : 2022-05-30 DOI: 10.2196/37759
C. A. Smith, Michelle M. Kelly
{"title":"In Anticipation of Sharing Pediatric Inpatient Notes: Focus Group Study With Stakeholders","authors":"C. A. Smith, Michelle M. Kelly","doi":"10.2196/37759","DOIUrl":"https://doi.org/10.2196/37759","url":null,"abstract":"Background Patient portals are a health information technology that allows patients and their proxies, such as caregivers and family members, to access designated portions of their electronic health record using mobile devices and web browsers. The Open Notes initiative in the United States, which became federal law in April 2021, has redrawn and expanded the boundaries of medical records. Only a few studies have focused on sharing notes with parents or caregivers of pediatric patients. Objective This study aimed to investigate the anticipated impact of increasing the flow of electronic health record information, specifically physicians’ daily inpatient progress notes, via a patient portal to parents during their child’s acute hospital stay—an understudied population and an understudied setting. Methods A total of 5 in-person focus groups were conducted with 34 stakeholders most likely impacted by sharing of physicians’ inpatient notes with parents of hospitalized children: hospital administrators, hospitalist physicians, interns and resident physicians, nurses, and the parents themselves. Results Distinct themes identified as benefits of pediatric inpatient Open Notes for parents emerged from all the 5 focus groups. These themes were communication, recapitulation and reinforcement, education, stress reduction, quality control, and improving family-provider relationships. Challenges identified included burden on provider, medical jargon, communication, sensitive content, and decreasing trust. Conclusions Providing patients and, in the case of pediatrics, caregivers with access to medical records via patient portals increases the flow of information and, in turn, their ability to participate in the discourse of their care. Parents in this study demonstrated not only that they act as monitors and guardians of their children’s health but also that they are observers of the clinical processes taking place in the hospital and at their child’s bedside. This includes the clinical documentation process, from the creation of notes to the reading and sharing of the notes. Parents acknowledge not only the importance of notes in the clinicians’ workflow but also their collaboration with providers as part of the health care team.","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-05-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43378192","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Co-design of an Electronic Dashboard to Support the Coproduction of Care in Pediatric Rheumatic Disease: Human-Centered Design and Usability Testing. 支持儿科风湿病护理合作生产的电子仪表板的共同设计:以人为本的设计和可用性测试。
Journal of Participatory Medicine Pub Date : 2022-04-22 DOI: 10.2196/34735
Alysha Taxter, Lisa Johnson, Doreen Tabussi, Yukiko Kimura, Brittany Donaldson, Erica Lawson, Vincent Del Gaizo, Daniela Vitelli, Corinne Pinter, Aricca Van Citters, Eugene Nelson, Tzielan Lee
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