Pub Date : 2024-11-06eCollection Date: 2024-11-01DOI: 10.1371/journal.pdig.0000645
Paola Daniore, Chuqiao Yan, Mina Stanikic, Stefania Iaquinto, Sabin Ammann, Christian P Kamm, Chiara Zecca, Pasquale Calabrese, Nina Steinemann, Viktor von Wyl
Remote longitudinal studies are on the rise and promise to increase reach and reduce participation barriers in chronic disease research. However, maintaining long-term retention in these studies remains challenging. Early identification of participants with different patterns of long-term retention offers the opportunity for tailored survey adaptations. Using data from the online arm of the Swiss Multiple Sclerosis Registry (SMSR), we assessed sociodemographic, health-related, and daily-life related baseline variables against measures of long-term retention in the follow-up surveys through multivariable logistic regressions and unsupervised clustering analyses. We further explored follow-up survey completion measures against survey requirements to inform future survey designs. Our analysis included data from 1,757 participants who completed a median of 4 (IQR 2-8) follow-up surveys after baseline with a maximum of 13 possible surveys. Survey start year, age, citizenship, MS type, symptom burden and independent driving were significant predictors of long-term retention at baseline. Three clusters of participants emerged, with no differences in long-term retention outcomes revealed across the clusters. Exploratory assessments of follow-up surveys suggest possible trends in increased survey complexity with lower rates of survey completion. Our findings offer insights into characteristics associated with long-term retention in remote longitudinal studies, yet they also highlight the possible influence of various unexplored factors on retention outcomes. Future studies should incorporate additional objective measures that reflect participants' individual contexts to understand their ability to remain engaged long-term and inform survey adaptations accordingly.
{"title":"Real-world patterns in remote longitudinal study participation: A study of the Swiss Multiple Sclerosis Registry.","authors":"Paola Daniore, Chuqiao Yan, Mina Stanikic, Stefania Iaquinto, Sabin Ammann, Christian P Kamm, Chiara Zecca, Pasquale Calabrese, Nina Steinemann, Viktor von Wyl","doi":"10.1371/journal.pdig.0000645","DOIUrl":"10.1371/journal.pdig.0000645","url":null,"abstract":"<p><p>Remote longitudinal studies are on the rise and promise to increase reach and reduce participation barriers in chronic disease research. However, maintaining long-term retention in these studies remains challenging. Early identification of participants with different patterns of long-term retention offers the opportunity for tailored survey adaptations. Using data from the online arm of the Swiss Multiple Sclerosis Registry (SMSR), we assessed sociodemographic, health-related, and daily-life related baseline variables against measures of long-term retention in the follow-up surveys through multivariable logistic regressions and unsupervised clustering analyses. We further explored follow-up survey completion measures against survey requirements to inform future survey designs. Our analysis included data from 1,757 participants who completed a median of 4 (IQR 2-8) follow-up surveys after baseline with a maximum of 13 possible surveys. Survey start year, age, citizenship, MS type, symptom burden and independent driving were significant predictors of long-term retention at baseline. Three clusters of participants emerged, with no differences in long-term retention outcomes revealed across the clusters. Exploratory assessments of follow-up surveys suggest possible trends in increased survey complexity with lower rates of survey completion. Our findings offer insights into characteristics associated with long-term retention in remote longitudinal studies, yet they also highlight the possible influence of various unexplored factors on retention outcomes. Future studies should incorporate additional objective measures that reflect participants' individual contexts to understand their ability to remain engaged long-term and inform survey adaptations accordingly.</p>","PeriodicalId":74465,"journal":{"name":"PLOS digital health","volume":"3 11","pages":"e0000645"},"PeriodicalIF":0.0,"publicationDate":"2024-11-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11540223/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142591905","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}
Pub Date : 2024-11-01DOI: 10.1371/journal.pdig.0000646
Daniel M Mwanga, Stella Waruingi, Gergana Manolova, Frederick M Wekesah, Damazo T Kadengye, Peter O Otieno, Mary Bitta, Ibrahim Omwom, Samuel Iddi, Paul Odero, Joan W Kinuthia, Tarun Dua, Neerja Chowdhary, Frank O Ouma, Isaac C Kipchirchir, George O Muhua, Josemir W Sander, Charles R Newton, Gershim Asiki
The availability of quality and timely data for routine monitoring of mental, neurological and substance use (MNS) disorders is a challenge, particularly in Africa. We assessed the feasibility of using an open-source data science technology (R Shiny) to improve health data reporting in Nairobi City County, Kenya. Based on a previously used manual tool, in June 2022, we developed a digital online data capture and reporting tool using the open-source Kobo toolbox. Primary mental health care providers (nurses and physicians) working in primary healthcare facilities in Nairobi were trained to use the tool to report cases of MNS disorders diagnosed in their facilities in real-time. The digital tool covered MNS disorders listed in the World Health Organization's (WHO) Mental Health Gap Action Program Intervention Guide (mhGAP-IG). In the digital system, data were disaggregated as new or repeat visits. We linked the data to a live dynamic reproducible dashboard created using R Shiny, summarising the data in tables and figures. Between January and August 2023, 9064 cases of MNS disorders (4454 newly diagnosed, 4591 revisits and 19 referrals) were reported using the digital system compared to 5321 using the manual system in a similar period in 2022. Reporting in the digital system was real-time compared to the manual system, where reports were aggregated and submitted monthly. The system improved data quality by providing timely and complete reports. Open-source applications to report health data is feasible and acceptable to primary health care providers. The technology improved real-time data capture, reporting, and monitoring, providing invaluable information on the burden of MNS disorders and which services can be planned and used for advocacy. The fast and efficient system can be scaled up and integrated with national and sub-national health information systems to reduce manual data reporting and decrease the likelihood of errors and inconsistencies.
{"title":"A digital dashboard for reporting mental, neurological and substance use disorders in Nairobi, Kenya: Implementing an open source data technology for improving data capture.","authors":"Daniel M Mwanga, Stella Waruingi, Gergana Manolova, Frederick M Wekesah, Damazo T Kadengye, Peter O Otieno, Mary Bitta, Ibrahim Omwom, Samuel Iddi, Paul Odero, Joan W Kinuthia, Tarun Dua, Neerja Chowdhary, Frank O Ouma, Isaac C Kipchirchir, George O Muhua, Josemir W Sander, Charles R Newton, Gershim Asiki","doi":"10.1371/journal.pdig.0000646","DOIUrl":"10.1371/journal.pdig.0000646","url":null,"abstract":"<p><p>The availability of quality and timely data for routine monitoring of mental, neurological and substance use (MNS) disorders is a challenge, particularly in Africa. We assessed the feasibility of using an open-source data science technology (R Shiny) to improve health data reporting in Nairobi City County, Kenya. Based on a previously used manual tool, in June 2022, we developed a digital online data capture and reporting tool using the open-source Kobo toolbox. Primary mental health care providers (nurses and physicians) working in primary healthcare facilities in Nairobi were trained to use the tool to report cases of MNS disorders diagnosed in their facilities in real-time. The digital tool covered MNS disorders listed in the World Health Organization's (WHO) Mental Health Gap Action Program Intervention Guide (mhGAP-IG). In the digital system, data were disaggregated as new or repeat visits. We linked the data to a live dynamic reproducible dashboard created using R Shiny, summarising the data in tables and figures. Between January and August 2023, 9064 cases of MNS disorders (4454 newly diagnosed, 4591 revisits and 19 referrals) were reported using the digital system compared to 5321 using the manual system in a similar period in 2022. Reporting in the digital system was real-time compared to the manual system, where reports were aggregated and submitted monthly. The system improved data quality by providing timely and complete reports. Open-source applications to report health data is feasible and acceptable to primary health care providers. The technology improved real-time data capture, reporting, and monitoring, providing invaluable information on the burden of MNS disorders and which services can be planned and used for advocacy. The fast and efficient system can be scaled up and integrated with national and sub-national health information systems to reduce manual data reporting and decrease the likelihood of errors and inconsistencies.</p>","PeriodicalId":74465,"journal":{"name":"PLOS digital health","volume":"3 11","pages":"e0000646"},"PeriodicalIF":0.0,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11530017/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142562901","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}
Pub Date : 2024-11-01DOI: 10.1371/journal.pdig.0000600
Madeleine Kearney, Leona Ryan, Rory Coyne, Hemendra Worlikar, Ian McCabe, Jennifer Doran, Peter J Carr, Jack Pinder, Seán Coleman, Cornelia Connolly, Jane C Walsh, Derek O'Keeffe
The Home Health Project, set on Clare Island, five kilometres off the Irish Atlantic coast, is a pilot exploration of ways in which various forms of technology can be utilised to improve healthcare for individuals living in isolated communities. The integration of digital health technologies presents enormous potential to revolutionise the accessibility of healthcare systems for those living in remote communities, allowing patient care to function outside of traditional healthcare settings. This study aims to explore the personal experiences and perspectives of participants who are using digital technologies in the delivery of their healthcare as part of the Home Health Project. Individual semi-structured interviews were conducted with nine members of the Clare Island community participating in the Home Health Project. Interviews took place in-person, in June 2023. Interviews were audio-recorded and transcribed verbatim. The data were analysed inductively using reflexive thematic analysis. To identify determinants of engagement with the Home Health Project, the data was then deductively coded to the Theoretical Domains Framework (TDF) and organised into themes. Seven of the possible 14 TDF domains were supported by the interview data as influences on engagement with the Project: Knowledge, Beliefs about capabilities, Optimism, Intentions, Environmental context and resources, Social influences and Emotion. Overall, participants evaluated the Home Health Project as being of high quality which contributed to self-reported increases in health literacy, autonomy, and feeling well supported in having their health concerns addressed. There was some apprehension related to data protection, coupled with a desire for extended training to address aspects of digital illiteracy. Future iterations can capitalise on the findings of this study by refining the technologies to reflect tailored health information, personalised to the individual user.
{"title":"A qualitative exploration of participants' perspectives and experiences of novel digital health infrastructure to enhance patient care in remote communities within the Home Health Project.","authors":"Madeleine Kearney, Leona Ryan, Rory Coyne, Hemendra Worlikar, Ian McCabe, Jennifer Doran, Peter J Carr, Jack Pinder, Seán Coleman, Cornelia Connolly, Jane C Walsh, Derek O'Keeffe","doi":"10.1371/journal.pdig.0000600","DOIUrl":"10.1371/journal.pdig.0000600","url":null,"abstract":"<p><p>The Home Health Project, set on Clare Island, five kilometres off the Irish Atlantic coast, is a pilot exploration of ways in which various forms of technology can be utilised to improve healthcare for individuals living in isolated communities. The integration of digital health technologies presents enormous potential to revolutionise the accessibility of healthcare systems for those living in remote communities, allowing patient care to function outside of traditional healthcare settings. This study aims to explore the personal experiences and perspectives of participants who are using digital technologies in the delivery of their healthcare as part of the Home Health Project. Individual semi-structured interviews were conducted with nine members of the Clare Island community participating in the Home Health Project. Interviews took place in-person, in June 2023. Interviews were audio-recorded and transcribed verbatim. The data were analysed inductively using reflexive thematic analysis. To identify determinants of engagement with the Home Health Project, the data was then deductively coded to the Theoretical Domains Framework (TDF) and organised into themes. Seven of the possible 14 TDF domains were supported by the interview data as influences on engagement with the Project: Knowledge, Beliefs about capabilities, Optimism, Intentions, Environmental context and resources, Social influences and Emotion. Overall, participants evaluated the Home Health Project as being of high quality which contributed to self-reported increases in health literacy, autonomy, and feeling well supported in having their health concerns addressed. There was some apprehension related to data protection, coupled with a desire for extended training to address aspects of digital illiteracy. Future iterations can capitalise on the findings of this study by refining the technologies to reflect tailored health information, personalised to the individual user.</p>","PeriodicalId":74465,"journal":{"name":"PLOS digital health","volume":"3 11","pages":"e0000600"},"PeriodicalIF":0.0,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11530050/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142562946","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}
Food and beverage marketing on social media contributes to poor diet quality and health outcomes for youth, given their vulnerability to marketing's effects and frequent use of social media. This study benchmarked the reach and frequency of earned and paid media posts, an understudied social media marketing strategy, of food brands frequently targeting Canadian youth. The 40 food brands with the highest brand shares in Canada between 2015 and 2020 from frequently marketed food categories were determined using Euromonitor data. Digital media engagement data from 2020 were licensed from Brandwatch, a social intelligence platform, to analyze the frequency and reach of brand-related posts on Twitter, Reddit, Tumblr, and YouTube. The 40 food brands were mentioned on Twitter, Reddit, Tumblr, and YouTube a total of 16.85M times, reaching an estimated 42.24B users in 2020. The food categories with the most posts and reach were fast food restaurants (60.5% of posts, 58.1% of total reach) and sugar sweetened beverages (29.3% of posts, 37.9% of total reach). More men mentioned (2.77M posts) and were reached (6.88B users) by the food brands compared to women (2.47M posts, 5.51B users reached). The food and beverage brands (anonymized), with the most posts were fast food restaurant 2 (26.5% of the total posts), soft drink 2 (10.4% of the total posts), and fast food restaurant 6 (10.1% of the total posts). In terms of reach, the top brands were fast food restaurant 2 (33.1% of the total reach), soft drink 1 (18.1% of the total reach), and fast food restaurant 6 (12.2% of the total reach). There is a high number of posts on social media related to food and beverage brands that are popular among children and adolescents, primarily for unhealthy food categories and certain brands. The conversations online surrounding these brands contribute to the normalization of unhealthy food and beverage intake. Given the popularity of social media use amongst of children and adolescents, policies aiming to protect these vulnerable groups need to include the digital food environment.
{"title":"Normalizing junk food: The frequency and reach of posts related to food and beverage brands on social media.","authors":"Monique Potvin Kent, Meghan Pritchard, Christine Mulligan, Lauren Remedios","doi":"10.1371/journal.pdig.0000630","DOIUrl":"10.1371/journal.pdig.0000630","url":null,"abstract":"<p><p>Food and beverage marketing on social media contributes to poor diet quality and health outcomes for youth, given their vulnerability to marketing's effects and frequent use of social media. This study benchmarked the reach and frequency of earned and paid media posts, an understudied social media marketing strategy, of food brands frequently targeting Canadian youth. The 40 food brands with the highest brand shares in Canada between 2015 and 2020 from frequently marketed food categories were determined using Euromonitor data. Digital media engagement data from 2020 were licensed from Brandwatch, a social intelligence platform, to analyze the frequency and reach of brand-related posts on Twitter, Reddit, Tumblr, and YouTube. The 40 food brands were mentioned on Twitter, Reddit, Tumblr, and YouTube a total of 16.85M times, reaching an estimated 42.24B users in 2020. The food categories with the most posts and reach were fast food restaurants (60.5% of posts, 58.1% of total reach) and sugar sweetened beverages (29.3% of posts, 37.9% of total reach). More men mentioned (2.77M posts) and were reached (6.88B users) by the food brands compared to women (2.47M posts, 5.51B users reached). The food and beverage brands (anonymized), with the most posts were fast food restaurant 2 (26.5% of the total posts), soft drink 2 (10.4% of the total posts), and fast food restaurant 6 (10.1% of the total posts). In terms of reach, the top brands were fast food restaurant 2 (33.1% of the total reach), soft drink 1 (18.1% of the total reach), and fast food restaurant 6 (12.2% of the total reach). There is a high number of posts on social media related to food and beverage brands that are popular among children and adolescents, primarily for unhealthy food categories and certain brands. The conversations online surrounding these brands contribute to the normalization of unhealthy food and beverage intake. Given the popularity of social media use amongst of children and adolescents, policies aiming to protect these vulnerable groups need to include the digital food environment.</p>","PeriodicalId":74465,"journal":{"name":"PLOS digital health","volume":"3 10","pages":"e0000630"},"PeriodicalIF":0.0,"publicationDate":"2024-10-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11527147/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142559677","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}
Pub Date : 2024-10-30eCollection Date: 2024-10-01DOI: 10.1371/journal.pdig.0000634
Stephanie C Garbern, Gazi Md Salahuddin Mamun, Shamsun Nahar Shaima, Nicole Hakim, Stephan Wegerich, Srilakshmi Alla, Monira Sarmin, Farzana Afroze, Jadranka Sekaric, Alicia Genisca, Nidhi Kadakia, Kikuyo Shaw, Abu Sayem Mirza Md Hasibur Rahman, Monique Gainey, Tahmeed Ahmed, Mohammod Jobayer Chisti, Adam C Levine
<p><p>Sepsis is the leading cause of child death globally with low- and middle-income countries (LMICs) bearing a disproportionate burden of pediatric sepsis deaths. Limited diagnostic and critical care capacity and health worker shortages contribute to delayed recognition of advanced sepsis (severe sepsis, septic shock, and/or multiple organ dysfunction) in LMICs. The aims of this study were to 1) assess the feasibility of a wearable device for physiologic monitoring of septic children in a LMIC setting and 2) develop machine learning models that utilize readily available wearable and clinical data to predict advanced sepsis in children. This was a prospective observational study of children with sepsis admitted to an intensive care unit in Dhaka, Bangladesh. A wireless, wearable device linked to a smartphone was used to collect continuous recordings of physiologic data for the duration of each patient's admission. The correlation between wearable device-collected vital signs (heart rate [HR], respiratory rate [RR], temperature [T]) and manually collected vital signs was assessed using Pearson's correlation coefficients and agreement was assessed using Bland-Altman plots. Clinical and laboratory data were used to calculate twice daily pediatric Sequential Organ Failure Assessment (pSOFA) scores. Ridge regression was used to develop three candidate models for advanced sepsis (pSOFA > 8) using combinations of clinical and wearable device data. In addition, the lead time between the models' detection of advanced sepsis and physicians' documentation was compared. 100 children were enrolled of whom 41% were female with a mean age of 15.4 (SD 29.6) months. In-hospital mortality rate was 24%. Patients were monitored for an average of 2.2 days, with > 99% data capture from the wearable device during this period. Pearson's r was 0.93 and 0.94 for HR and RR, respectively) with r = 0.72 for core T). Mean difference (limits of agreement) was 0.04 (-14.26, 14.34) for HR, 0.29 (-5.91, 6.48) for RR, and -0.0004 (-1.48, 1.47) for core T. Model B, which included two manually measured variables (mean arterial pressure and SpO2:FiO2) and wearable device data had excellent discrimination, with an area under the Receiver-Operating Curve (AUC) of 0.86. Model C, which consisted of only wearable device features, also performed well, with an AUC of 0.78. Model B was able to predict the development of advanced sepsis more than 2.5 hours earlier compared to clinical documentation. A wireless, wearable device was feasible for continuous, remote physiologic monitoring among children with sepsis in a LMIC setting. Additionally, machine-learning models using wearable device data could discriminate cases of advanced sepsis without any laboratory tests and minimal or no clinician inputs. Future research will develop this technology into a smartphone-based system which can serve as both a low-cost telemetry monitor and an early warning clinical alert system, providing the potent
败血症是全球儿童死亡的主要原因,而中低收入国家(LMICs)在小儿败血症死亡中承担着过重的负担。在中低收入国家,诊断和重症监护能力有限以及医护人员短缺导致对晚期败血症(严重败血症、脓毒性休克和/或多器官功能障碍)的识别延迟。本研究的目的是:1)评估可穿戴设备在低收入和中等收入国家对脓毒症儿童进行生理监测的可行性;2)开发机器学习模型,利用随时可用的可穿戴设备和临床数据预测儿童晚期脓毒症。这是一项前瞻性观察研究,研究对象是孟加拉国达卡一家重症监护室收治的败血症患儿。研究人员使用与智能手机相连的无线可穿戴设备收集每位患者入院期间的连续生理数据记录。使用皮尔逊相关系数评估了可穿戴设备收集的生命体征(心率 [HR]、呼吸频率 [RR]、体温 [T])与人工收集的生命体征之间的相关性,并使用布兰德-阿尔特曼图评估了两者之间的一致性。临床和实验室数据用于计算每天两次的儿科序贯器官衰竭评估(pSOFA)评分。利用临床和可穿戴设备数据的组合,采用岭回归法建立了晚期脓毒症(pSOFA > 8)的三个候选模型。此外,还比较了模型检测出晚期脓毒症与医生记录之间的准备时间。100 名患儿中,41% 为女性,平均年龄为 15.4 个月(标准差为 29.6 个月)。院内死亡率为 24%。患者平均接受了 2.2 天的监测,在此期间,可穿戴设备的数据采集率大于 99%。HR 和 RR 的皮尔森 r 分别为 0.93 和 0.94,核心 T 的 r = 0.72)。模型 B 包括两个人工测量变量(平均动脉压和 SpO2:FiO2)和可穿戴设备数据,具有极佳的分辨能力,接收者操作曲线下面积 (AUC) 为 0.86。仅包含可穿戴设备特征的模型 C 也表现出色,AUC 为 0.78。与临床记录相比,模型 B 能够提前 2.5 小时以上预测晚期败血症的发生。无线可穿戴设备可用于在低收入国家环境中对脓毒症患儿进行连续、远程生理监测。此外,利用可穿戴设备数据建立的机器学习模型可以在不进行任何实验室检测和极少或根本不需要临床医生输入数据的情况下对晚期败血症病例进行判别。未来的研究将把这项技术开发成基于智能手机的系统,既可作为低成本遥测监护仪,也可作为早期预警临床警报系统,为在资源有限的环境中提供高质量的儿科脓毒症重症监护能力提供可能。
{"title":"A novel digital health approach to improving global pediatric sepsis care in Bangladesh using wearable technology and machine learning.","authors":"Stephanie C Garbern, Gazi Md Salahuddin Mamun, Shamsun Nahar Shaima, Nicole Hakim, Stephan Wegerich, Srilakshmi Alla, Monira Sarmin, Farzana Afroze, Jadranka Sekaric, Alicia Genisca, Nidhi Kadakia, Kikuyo Shaw, Abu Sayem Mirza Md Hasibur Rahman, Monique Gainey, Tahmeed Ahmed, Mohammod Jobayer Chisti, Adam C Levine","doi":"10.1371/journal.pdig.0000634","DOIUrl":"10.1371/journal.pdig.0000634","url":null,"abstract":"<p><p>Sepsis is the leading cause of child death globally with low- and middle-income countries (LMICs) bearing a disproportionate burden of pediatric sepsis deaths. Limited diagnostic and critical care capacity and health worker shortages contribute to delayed recognition of advanced sepsis (severe sepsis, septic shock, and/or multiple organ dysfunction) in LMICs. The aims of this study were to 1) assess the feasibility of a wearable device for physiologic monitoring of septic children in a LMIC setting and 2) develop machine learning models that utilize readily available wearable and clinical data to predict advanced sepsis in children. This was a prospective observational study of children with sepsis admitted to an intensive care unit in Dhaka, Bangladesh. A wireless, wearable device linked to a smartphone was used to collect continuous recordings of physiologic data for the duration of each patient's admission. The correlation between wearable device-collected vital signs (heart rate [HR], respiratory rate [RR], temperature [T]) and manually collected vital signs was assessed using Pearson's correlation coefficients and agreement was assessed using Bland-Altman plots. Clinical and laboratory data were used to calculate twice daily pediatric Sequential Organ Failure Assessment (pSOFA) scores. Ridge regression was used to develop three candidate models for advanced sepsis (pSOFA > 8) using combinations of clinical and wearable device data. In addition, the lead time between the models' detection of advanced sepsis and physicians' documentation was compared. 100 children were enrolled of whom 41% were female with a mean age of 15.4 (SD 29.6) months. In-hospital mortality rate was 24%. Patients were monitored for an average of 2.2 days, with > 99% data capture from the wearable device during this period. Pearson's r was 0.93 and 0.94 for HR and RR, respectively) with r = 0.72 for core T). Mean difference (limits of agreement) was 0.04 (-14.26, 14.34) for HR, 0.29 (-5.91, 6.48) for RR, and -0.0004 (-1.48, 1.47) for core T. Model B, which included two manually measured variables (mean arterial pressure and SpO2:FiO2) and wearable device data had excellent discrimination, with an area under the Receiver-Operating Curve (AUC) of 0.86. Model C, which consisted of only wearable device features, also performed well, with an AUC of 0.78. Model B was able to predict the development of advanced sepsis more than 2.5 hours earlier compared to clinical documentation. A wireless, wearable device was feasible for continuous, remote physiologic monitoring among children with sepsis in a LMIC setting. Additionally, machine-learning models using wearable device data could discriminate cases of advanced sepsis without any laboratory tests and minimal or no clinician inputs. Future research will develop this technology into a smartphone-based system which can serve as both a low-cost telemetry monitor and an early warning clinical alert system, providing the potent","PeriodicalId":74465,"journal":{"name":"PLOS digital health","volume":"3 10","pages":"e0000634"},"PeriodicalIF":0.0,"publicationDate":"2024-10-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11524492/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142549414","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}
Pub Date : 2024-10-30eCollection Date: 2024-10-01DOI: 10.1371/journal.pdig.0000643
Lindsay Palmer, Jeffrey A Wickersham, Kamal Gautam, Francesca Maviglia, Beverly-Danielle Bruno, Iskandar Azwa, Antoine Khati, Frederick L Altice, Kiran Paudel, Sherry Pagoto, Roman Shrestha
Recent estimates report a high incidence and prevalence of HIV among men who have sex with men (MSM) in Malaysia. Mobile apps are a promising and cost-effective intervention modality to reach stigmatized and hard-to-reach populations to link them to HIV prevention services (e.g., HIV testing, pre-exposure prophylaxis, PrEP). This study assessed attitudes and preferences toward the format, content, and features of a mobile app designed to increase HIV testing and PrEP uptake among Malaysian MSM. We conducted six online focus groups between August and September 2021 with 20 MSM and 16 stakeholders (e.g., doctors, nurses, pharmacists, and NGO staff) to query. Transcripts were analyzed in Dedoose software to identify thematic content. Key themes in terms of app functions related to stylistic preferences (e.g., design, user interface), engagement strategies (e.g., reward systems, reminders), recommendations for new functions (e.g., enhanced communication options via chat, discussion forum), cost of services (e.g., PrEP), and legal considerations concerning certain features (e.g., telehealth, patient identification), minimizing privacy and confidentiality risks. Our data suggest that a tailored HIV prevention app would be acceptable among MSM in Malaysia. The findings further provide detailed recommendations for successfully developing a mobile app to improve access to HIV prevention services (e.g., HIV testing, PrEP) for optimal use among MSM in Malaysia.
{"title":"User preferences for an mHealth app to support HIV testing and pre-exposure prophylaxis uptake among men who have sex with men in Malaysia.","authors":"Lindsay Palmer, Jeffrey A Wickersham, Kamal Gautam, Francesca Maviglia, Beverly-Danielle Bruno, Iskandar Azwa, Antoine Khati, Frederick L Altice, Kiran Paudel, Sherry Pagoto, Roman Shrestha","doi":"10.1371/journal.pdig.0000643","DOIUrl":"10.1371/journal.pdig.0000643","url":null,"abstract":"<p><p>Recent estimates report a high incidence and prevalence of HIV among men who have sex with men (MSM) in Malaysia. Mobile apps are a promising and cost-effective intervention modality to reach stigmatized and hard-to-reach populations to link them to HIV prevention services (e.g., HIV testing, pre-exposure prophylaxis, PrEP). This study assessed attitudes and preferences toward the format, content, and features of a mobile app designed to increase HIV testing and PrEP uptake among Malaysian MSM. We conducted six online focus groups between August and September 2021 with 20 MSM and 16 stakeholders (e.g., doctors, nurses, pharmacists, and NGO staff) to query. Transcripts were analyzed in Dedoose software to identify thematic content. Key themes in terms of app functions related to stylistic preferences (e.g., design, user interface), engagement strategies (e.g., reward systems, reminders), recommendations for new functions (e.g., enhanced communication options via chat, discussion forum), cost of services (e.g., PrEP), and legal considerations concerning certain features (e.g., telehealth, patient identification), minimizing privacy and confidentiality risks. Our data suggest that a tailored HIV prevention app would be acceptable among MSM in Malaysia. The findings further provide detailed recommendations for successfully developing a mobile app to improve access to HIV prevention services (e.g., HIV testing, PrEP) for optimal use among MSM in Malaysia.</p>","PeriodicalId":74465,"journal":{"name":"PLOS digital health","volume":"3 10","pages":"e0000643"},"PeriodicalIF":0.0,"publicationDate":"2024-10-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11524455/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142549416","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}
Pub Date : 2024-10-29eCollection Date: 2024-10-01DOI: 10.1371/journal.pdig.0000456
Alexander D VanHelene, Ishaani Khatri, C Beau Hilton, Sanjay Mishra, Ece D Gamsiz Uzun, Jeremy L Warner
Meta-researchers commonly leverage tools that infer gender from first names, especially when studying gender disparities. However, tools vary in their accuracy, ease of use, and cost. The objective of this study was to compare the accuracy and cost of the commercial software Genderize and Gender API, and the open-source gender R package. Differences in binary gender prediction accuracy between the three services were evaluated. Gender prediction accuracy was tested on a multi-national dataset of 32,968 gender-labeled clinical trial authors. Additionally, two datasets from previous studies with 5779 and 6131 names, respectively, were re-evaluated with modern implementations of Genderize and Gender API. The gender inference accuracy of Genderize and Gender API were compared, both with and without supplying trialists' country of origin in the API call. The accuracy of the gender R package was only evaluated without supplying countries of origin. The accuracy of Genderize, Gender API, and the gender R package were defined as the percentage of correct gender predictions. Accuracy differences between methods were evaluated using McNemar's test. Genderize and Gender API demonstrated 96.6% and 96.1% accuracy, respectively, when countries of origin were not supplied in the API calls. Genderize and Gender API achieved the highest accuracy when predicting the gender of German authors with accuracies greater than 98%. Genderize and Gender API were least accurate with South Korean, Chinese, Singaporean, and Taiwanese authors, demonstrating below 82% accuracy. Genderize can provide similar accuracy to Gender API while being 4.85x less expensive. The gender R package achieved below 86% accuracy on the full dataset. In the replication studies, Genderize and gender API demonstrated better performance than in the original publications. Our results indicate that Genderize and Gender API achieve similar accuracy on a multinational dataset. The gender R package is uniformly less accurate than Genderize and Gender API.
元研究人员通常会利用从名字推断性别的工具,尤其是在研究性别差异时。然而,这些工具在准确性、易用性和成本方面各不相同。本研究旨在比较商业软件 Genderize 和 Gender API 以及开源性别 R 软件包的准确性和成本。评估了三种服务在二元性别预测准确性方面的差异。性别预测准确性在一个包含 32968 名性别标签临床试验作者的多国数据集上进行了测试。此外,还使用 Genderize 和 Gender API 的现代实现方法重新评估了以前研究中的两个数据集,这两个数据集分别包含 5779 和 6131 个名字。在 API 调用中提供和不提供试验者原籍国的情况下,对 Genderize 和 Gender API 的性别推断准确性进行了比较。仅在不提供原籍国的情况下评估了性别 R 软件包的准确性。Genderize、Gender API 和性别 R 软件包的准确性被定义为性别预测正确率。使用 McNemar 检验评估了不同方法之间的准确性差异。当在 API 调用中不提供原籍国时,Genderize 和 Gender API 的准确率分别为 96.6% 和 96.1%。当预测德国作者的性别时,Genderize 和 Gender API 的准确率最高,准确率超过 98%。在预测韩国、中国、新加坡和台湾作者的性别时,Genderize 和 Gender API 的准确率最低,准确率低于 82%。Genderize 可以提供与 Gender API 相似的准确率,而成本却低 4.85 倍。性别 R 软件包在全部数据集上的准确率低于 86%。在复制研究中,Genderize 和 Gender API 的表现优于原始出版物。我们的结果表明,Genderize 和 Gender API 在多国数据集上达到了相似的准确率。性别 R 软件包的准确性一律低于 Genderize 和 Gender API。
{"title":"Inferring gender from first names: Comparing the accuracy of Genderize, Gender API, and the gender R package on authors of diverse nationality.","authors":"Alexander D VanHelene, Ishaani Khatri, C Beau Hilton, Sanjay Mishra, Ece D Gamsiz Uzun, Jeremy L Warner","doi":"10.1371/journal.pdig.0000456","DOIUrl":"https://doi.org/10.1371/journal.pdig.0000456","url":null,"abstract":"<p><p>Meta-researchers commonly leverage tools that infer gender from first names, especially when studying gender disparities. However, tools vary in their accuracy, ease of use, and cost. The objective of this study was to compare the accuracy and cost of the commercial software Genderize and Gender API, and the open-source gender R package. Differences in binary gender prediction accuracy between the three services were evaluated. Gender prediction accuracy was tested on a multi-national dataset of 32,968 gender-labeled clinical trial authors. Additionally, two datasets from previous studies with 5779 and 6131 names, respectively, were re-evaluated with modern implementations of Genderize and Gender API. The gender inference accuracy of Genderize and Gender API were compared, both with and without supplying trialists' country of origin in the API call. The accuracy of the gender R package was only evaluated without supplying countries of origin. The accuracy of Genderize, Gender API, and the gender R package were defined as the percentage of correct gender predictions. Accuracy differences between methods were evaluated using McNemar's test. Genderize and Gender API demonstrated 96.6% and 96.1% accuracy, respectively, when countries of origin were not supplied in the API calls. Genderize and Gender API achieved the highest accuracy when predicting the gender of German authors with accuracies greater than 98%. Genderize and Gender API were least accurate with South Korean, Chinese, Singaporean, and Taiwanese authors, demonstrating below 82% accuracy. Genderize can provide similar accuracy to Gender API while being 4.85x less expensive. The gender R package achieved below 86% accuracy on the full dataset. In the replication studies, Genderize and gender API demonstrated better performance than in the original publications. Our results indicate that Genderize and Gender API achieve similar accuracy on a multinational dataset. The gender R package is uniformly less accurate than Genderize and Gender API.</p>","PeriodicalId":74465,"journal":{"name":"PLOS digital health","volume":"3 10","pages":"e0000456"},"PeriodicalIF":0.0,"publicationDate":"2024-10-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11521266/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142549415","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}
Pub Date : 2024-10-25eCollection Date: 2024-10-01DOI: 10.1371/journal.pdig.0000636
Nowell M Fine, Sunil V Kalmady, Weijie Sun, Russ Greiner, Jonathan G Howlett, James A White, Finlay A McAlister, Justin A Ezekowitz, Padma Kaul
Aims: Patients visiting the emergency department (ED) or hospitalized for heart failure (HF) are at increased risk for subsequent adverse outcomes, however effective risk stratification remains challenging. We utilized a machine-learning (ML)-based approach to identify HF patients at risk of adverse outcomes after an ED visit or hospitalization using a large regional administrative healthcare data system.
Methods and results: Patients visiting the ED or hospitalized with HF between 2002-2016 in Alberta, Canada were included. Outcomes of interest were 30-day and 1-year HF-related ED visits, HF hospital readmission or all-cause mortality. We applied a feature extraction method using deep feature synthesis from multiple sources of health data and compared performance of a gradient boosting algorithm (CatBoost) with logistic regression modelling. The area under receiver operating characteristic curve (AUC-ROC) was used to assess model performance. We included 50,630 patients with 93,552 HF ED visits/hospitalizations. At 30-day follow-up in the holdout validation cohort, the AUC-ROC for the combined endpoint of HF ED visit, HF hospital readmission or death for the Catboost and logistic regression models was 74.16 (73.18-75.11) versus 62.25 (61.25-63.18), respectively. At 1-year follow-up corresponding values were 76.80 (76.1-77.47) versus 69.52 (68.77-70.26), respectively. AUC-ROC values for the endpoint of all-cause death alone at 30-days and 1-year follow-up were 83.21 (81.83-84.41) versus 69.53 (67.98-71.18), and 85.73 (85.14-86.29) versus 69.40 (68.57-70.26), for the CatBoost and logistic regression models, respectively.
Conclusions: ML-based modelling with deep feature synthesis provided superior risk stratification for HF patients at 30-days and 1-year follow-up after an ED visit or hospitalization using data from a large administrative regional healthcare system.
{"title":"Machine Learning For Risk Prediction After Heart Failure Emergency Department Visit or Hospital Admission Using Administrative Health Data.","authors":"Nowell M Fine, Sunil V Kalmady, Weijie Sun, Russ Greiner, Jonathan G Howlett, James A White, Finlay A McAlister, Justin A Ezekowitz, Padma Kaul","doi":"10.1371/journal.pdig.0000636","DOIUrl":"https://doi.org/10.1371/journal.pdig.0000636","url":null,"abstract":"<p><strong>Aims: </strong>Patients visiting the emergency department (ED) or hospitalized for heart failure (HF) are at increased risk for subsequent adverse outcomes, however effective risk stratification remains challenging. We utilized a machine-learning (ML)-based approach to identify HF patients at risk of adverse outcomes after an ED visit or hospitalization using a large regional administrative healthcare data system.</p><p><strong>Methods and results: </strong>Patients visiting the ED or hospitalized with HF between 2002-2016 in Alberta, Canada were included. Outcomes of interest were 30-day and 1-year HF-related ED visits, HF hospital readmission or all-cause mortality. We applied a feature extraction method using deep feature synthesis from multiple sources of health data and compared performance of a gradient boosting algorithm (CatBoost) with logistic regression modelling. The area under receiver operating characteristic curve (AUC-ROC) was used to assess model performance. We included 50,630 patients with 93,552 HF ED visits/hospitalizations. At 30-day follow-up in the holdout validation cohort, the AUC-ROC for the combined endpoint of HF ED visit, HF hospital readmission or death for the Catboost and logistic regression models was 74.16 (73.18-75.11) versus 62.25 (61.25-63.18), respectively. At 1-year follow-up corresponding values were 76.80 (76.1-77.47) versus 69.52 (68.77-70.26), respectively. AUC-ROC values for the endpoint of all-cause death alone at 30-days and 1-year follow-up were 83.21 (81.83-84.41) versus 69.53 (67.98-71.18), and 85.73 (85.14-86.29) versus 69.40 (68.57-70.26), for the CatBoost and logistic regression models, respectively.</p><p><strong>Conclusions: </strong>ML-based modelling with deep feature synthesis provided superior risk stratification for HF patients at 30-days and 1-year follow-up after an ED visit or hospitalization using data from a large administrative regional healthcare system.</p>","PeriodicalId":74465,"journal":{"name":"PLOS digital health","volume":"3 10","pages":"e0000636"},"PeriodicalIF":0.0,"publicationDate":"2024-10-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11508085/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142514298","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}
Pub Date : 2024-10-25eCollection Date: 2024-10-01DOI: 10.1371/journal.pdig.0000638
Hind Mohamed, Esme Kittle, Nehal Nour, Ruba Hamed, Kaylem Feeney, Jon Salsberg, Dervla Kelly
Health information on the Internet has a ubiquitous influence on health consumers' behaviour. Searching and evaluating online health information poses a real challenge for many health consumers. To our knowledge, our systematic review paper is the first to explore the interventions targeting lay people to improve their e-health literacy skills. Our paper aims to explore interventions to improve laypeople ability to identify trustworthy online health information. The search was conducted on Ovid Medline, Embase, Cochrane database, Academic Search Complete, and APA psych info. Publications were selected by screening title, abstract, and full text, then manual review of reference lists of selected publications. Data was extracted from eligible studies on an excel sheet about the types of interventions, the outcomes of the interventions and whether they are effective, and the barriers and facilitators for using the interventions by consumers. A mixed-methods appraisal tool was used to appraise evidence from quantitative, qualitative, and mixed-methods studies. Whittemore and Knafl's integrative review approach was used as a guidance for narrative synthesis. The total number of included studies is twelve. Media literacy interventions are the most common type of interventions. Few studies measured the effect of the interventions on patient health outcomes. All the procedural and navigation/ evaluation skills-building interventions are significantly effective. Computer/internet illiteracy and the absence of guidance/facilitators are significant barriers to web-based intervention use. Few interventions are distinguished by its implementation in a context tailored to consumers, using a human-centred design approach, and delivery through multiple health stakeholders' partnership. There is potential for further research to understand how to improve consumers health information use focusing on collaborative learning, using human-centred approaches, and addressing the social determinants of health.
互联网上的健康信息对健康消费者的行为有着无处不在的影响。对许多健康消费者来说,搜索和评估在线健康信息是一项真正的挑战。据我们所知,我们的系统综述论文是第一篇探讨针对非专业人士的干预措施,以提高他们的电子健康知识技能的论文。我们的论文旨在探讨提高非专业人士识别可信在线健康信息能力的干预措施。我们在 Ovid Medline、Embase、Cochrane 数据库、Academic Search Complete 和 APA psych info 上进行了检索。通过筛选标题、摘要和全文,然后对所选出版物的参考文献列表进行人工审阅。通过 excel 表从符合条件的研究中提取数据,内容包括干预措施的类型、干预措施的结果和是否有效,以及消费者使用干预措施的障碍和促进因素。采用混合方法评估工具对定量、定性和混合方法研究的证据进行评估。Whittemore和Knafl的综合综述法被用作叙事综合的指导。共纳入 12 项研究。媒体素养干预是最常见的干预类型。很少有研究测量了干预措施对患者健康结果的影响。所有程序性干预和导航/评估技能培养干预都非常有效。计算机/互联网文盲和缺乏指导/协助者是使用网络干预的主要障碍。很少有干预措施能够在为消费者量身定制的环境中实施,采用以人为本的设计方法,并通过多个健康利益相关者的合作来实施。我们有潜力开展进一步的研究,以了解如何改善消费者对健康信息的使用,重点是协作学习、使用以人为本的方法以及解决健康的社会决定因素。
{"title":"An integrative systematic review on interventions to improve layperson's ability to identify trustworthy digital health information.","authors":"Hind Mohamed, Esme Kittle, Nehal Nour, Ruba Hamed, Kaylem Feeney, Jon Salsberg, Dervla Kelly","doi":"10.1371/journal.pdig.0000638","DOIUrl":"https://doi.org/10.1371/journal.pdig.0000638","url":null,"abstract":"<p><p>Health information on the Internet has a ubiquitous influence on health consumers' behaviour. Searching and evaluating online health information poses a real challenge for many health consumers. To our knowledge, our systematic review paper is the first to explore the interventions targeting lay people to improve their e-health literacy skills. Our paper aims to explore interventions to improve laypeople ability to identify trustworthy online health information. The search was conducted on Ovid Medline, Embase, Cochrane database, Academic Search Complete, and APA psych info. Publications were selected by screening title, abstract, and full text, then manual review of reference lists of selected publications. Data was extracted from eligible studies on an excel sheet about the types of interventions, the outcomes of the interventions and whether they are effective, and the barriers and facilitators for using the interventions by consumers. A mixed-methods appraisal tool was used to appraise evidence from quantitative, qualitative, and mixed-methods studies. Whittemore and Knafl's integrative review approach was used as a guidance for narrative synthesis. The total number of included studies is twelve. Media literacy interventions are the most common type of interventions. Few studies measured the effect of the interventions on patient health outcomes. All the procedural and navigation/ evaluation skills-building interventions are significantly effective. Computer/internet illiteracy and the absence of guidance/facilitators are significant barriers to web-based intervention use. Few interventions are distinguished by its implementation in a context tailored to consumers, using a human-centred design approach, and delivery through multiple health stakeholders' partnership. There is potential for further research to understand how to improve consumers health information use focusing on collaborative learning, using human-centred approaches, and addressing the social determinants of health.</p>","PeriodicalId":74465,"journal":{"name":"PLOS digital health","volume":"3 10","pages":"e0000638"},"PeriodicalIF":0.0,"publicationDate":"2024-10-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11508166/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142514294","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}
Innovative information-sharing techniques and rapid access to stored research data as scientific currency have proved highly beneficial in healthcare and health research. Yet, researchers often experience conflict between data sharing to promote health-related scientific knowledge for the common good and their personal academic advancement. There is a scarcity of studies exploring the perspectives of health researchers in sub-Saharan Africa (SSA) regarding the challenges with data sharing in the context of data-intensive research. The study began with a quantitative survey and research, after which the researchers engaged in a qualitative study. This qualitative cross-sectional baseline study reports on the challenges faced by health researchers, in terms of data sharing. In-depth interviews were conducted via Microsoft Teams between July 2022 and April 2023 with 16 health researchers from 16 different countries across SSA. We employed purposive and snowballing sampling techniques to invite participants via email. The recorded interviews were transcribed, coded and analysed thematically using ATLAS.ti. Five recurrent themes and several subthemes emerged related to (1) individual researcher concerns (fears regarding data sharing, publication and manuscript pressure), (2) structural issues impacting data sharing, (3) recognition in academia (scooping of research data, acknowledgement and research incentives) (4) ethical challenges experienced by health researchers in SSA (confidentiality and informed consent, commercialisation and benefit sharing) and (5) legal lacunae (gaps in laws and regulations). Significant discomfort about data sharing exists amongst health researchers in this sample of respondents from SSA, resulting in a reluctance to share data despite acknowledging the scientific benefits of such sharing. This discomfort is related to the lack of adequate guidelines and governance processes in the context of health research collaborations, both locally and internationally. Consequently, concerns about ethical and legal issues are increasing. Resources are needed in SSA to improve the quality, value and veracity of data-as these are ethical imperatives. Strengthening data governance via robust guidelines, legislation and appropriate data sharing agreements will increase trust amongst health researchers and data donors alike.
{"title":"Data as scientific currency: Challenges experienced by researchers with sharing health data in sub-Saharan Africa.","authors":"Jyothi Chabilall, Qunita Brown, Nezerith Cengiz, Keymanthri Moodley","doi":"10.1371/journal.pdig.0000635","DOIUrl":"https://doi.org/10.1371/journal.pdig.0000635","url":null,"abstract":"<p><p>Innovative information-sharing techniques and rapid access to stored research data as scientific currency have proved highly beneficial in healthcare and health research. Yet, researchers often experience conflict between data sharing to promote health-related scientific knowledge for the common good and their personal academic advancement. There is a scarcity of studies exploring the perspectives of health researchers in sub-Saharan Africa (SSA) regarding the challenges with data sharing in the context of data-intensive research. The study began with a quantitative survey and research, after which the researchers engaged in a qualitative study. This qualitative cross-sectional baseline study reports on the challenges faced by health researchers, in terms of data sharing. In-depth interviews were conducted via Microsoft Teams between July 2022 and April 2023 with 16 health researchers from 16 different countries across SSA. We employed purposive and snowballing sampling techniques to invite participants via email. The recorded interviews were transcribed, coded and analysed thematically using ATLAS.ti. Five recurrent themes and several subthemes emerged related to (1) individual researcher concerns (fears regarding data sharing, publication and manuscript pressure), (2) structural issues impacting data sharing, (3) recognition in academia (scooping of research data, acknowledgement and research incentives) (4) ethical challenges experienced by health researchers in SSA (confidentiality and informed consent, commercialisation and benefit sharing) and (5) legal lacunae (gaps in laws and regulations). Significant discomfort about data sharing exists amongst health researchers in this sample of respondents from SSA, resulting in a reluctance to share data despite acknowledging the scientific benefits of such sharing. This discomfort is related to the lack of adequate guidelines and governance processes in the context of health research collaborations, both locally and internationally. Consequently, concerns about ethical and legal issues are increasing. Resources are needed in SSA to improve the quality, value and veracity of data-as these are ethical imperatives. Strengthening data governance via robust guidelines, legislation and appropriate data sharing agreements will increase trust amongst health researchers and data donors alike.</p>","PeriodicalId":74465,"journal":{"name":"PLOS digital health","volume":"3 10","pages":"e0000635"},"PeriodicalIF":0.0,"publicationDate":"2024-10-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11500889/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142514296","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}