Dataset Information

Participatory Design of an Electronic Cross-Facility Health Record (ECHR) System for Pediatric Palliative Care: A Think-Aloud Study.

ABSTRACT: Pediatric palliative care (PPC) patients experience years of multisectoral and professional care. An electronic cross-facility health record (ECHR) system can support the immediate exchange of information among PPC professionals. Based on a needs assessment, a prototype ECHR system was developed. To evaluate potential users' perspective regarding the system, a qualitative observational study was conducted consisting of a concurrent think-aloud session and a semi-structured qualitative interview. Twenty PPC professionals (nurses, physicians) from specialized outpatient PPC teams, a PPC unit, and medical offices rated the ECHR system as a helpful tool to improve the exchange and collection of information, communication between PPC professionals, and treatment planning. From the user's point of view, the basic logic of the ECHR system should be further adapted to improve the interaction of data remirrored from patient records of outpatient and inpatient care with those entered via the system. The users wished for further functions (text search) and content (information on therapies). Some content, such as the treatment process, needs to be further adapted. The developed ECHR system needs to be more specific in some features by offering all available information; while for other features, be less specific to offer a quick overview. The ability to share information promptly and automatically was seen as a tremendous improvement to the quality of care for PPC patients.

SUBMITTER: Busse TS

PROVIDER: S-EPMC8534759 | biostudies-literature | 2021 Sep

REPOSITORIES: biostudies-literature

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Participatory Design of an Electronic Cross-Facility Health Record (ECHR) System for Pediatric Palliative Care: A Think-Aloud Study.

Busse Theresa Sophie TS Jux Chantal C Kernebeck Sven S Dreier Larissa Alice LA Meyer Dorothee D Zenz Daniel D Zernikow Boris B Ehlers Jan Peter JP

Children (Basel, Switzerland) 20210924 10

<h4>Background</h4>Pediatric palliative care (PPC) patients experience years of multisectoral and professional care. An electronic cross-facility health record (ECHR) system can support the immediate exchange of information among PPC professionals. Based on a needs assessment, a prototype ECHR system was developed.<h4>Methods</h4>To evaluate potential users' perspective regarding the system, a qualitative observational study was conducted consisting of a concurrent think-aloud session and a semi ...[more]

PMID: 34682105

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Project description:BackgroundIn the United States, patients can access their electronic health record (EHR) data through patient portals. However, current patient portals are mainly focused on a single provider, with very limited data sharing capabilities and put low emphasis on independent sensemaking of the EHR data. This makes it very challenging for patients to switch between different portals and aggregate the data to obtain a complete picture of their medical history and to make sense of it. Owing to this fragmentation, patients are exposed to numerous inconveniences such as medical errors, repeated tests, and limited self-advocacy.ObjectiveTo overcome the limitations of EHR patient portals, we designed and developed Discovery-a web-based application that aggregates EHR data from multiple providers and present them to the patient for efficient exploration and sensemaking. To learn how well Discovery meets the patients' sensemaking needs and what features should such applications include, we conducted an evaluation study.MethodsWe conducted a remote study with 14 participants. In a 60-minute session and relying on the think-aloud protocol, participants were asked to complete a variety of sensemaking tasks and provide feedback upon completion. The audio materials were transcribed for analysis and the video recordings of the users' interactions with Discovery were annotated to provide additional context. These combined textual data were thematically analyzed to surface themes that reflect how participants used Discovery's features, what sensemaking of their EHR data really entails, and what features are desirable to support that process better.ResultsWe found that Discovery provided much needed features and could be used in a variety of everyday scenarios, especially for preparing and during clinical visits and also for raising awareness, reflection, and planning. According to the study participants, Discovery provided a robust set of features for supporting independent exploration and sensemaking of their EHR data: summary and quick overview of the data, finding prevalence, periodicity, co-occurrence, and pre-post of medical events, as well as comparing medical record types and subtypes across providers. In addition, we extracted important design implications from the user feedback on data exploration with multiple views and nonstandard user interface elements.ConclusionsPatient-centered sensemaking tools should have a core set of features that can be learned quickly and support common use cases for a variety of users. The patients should be able to detect time-oriented patterns of medical events and get enough context and explanation on demand in a single exploration view that feels warm and familiar and relies on patient-friendly language. However, this view should have enough plasticity to adjust to the patient's information needs as the sensemaking unfolds. Future designs should include the physicians in the patient's sensemaking process and improve the communication in clinical visits and via messaging.

Project description:BackgroundThrough third party applications, patients in the United States have access to their electronic health record (EHR) data from multiple health care providers. However, these applications offer only a predefined organization of these records by type, time stamp, or provider, leaving out meaningful connections between them. This prevents patients from efficiently reviewing, exploring, and making sense of their EHR data based on current or ongoing health issues. The lack of personalized organization and important connections can limit patients' ability to use their data and make informed health decisions.ObjectiveTo address these challenges, we created Discovery, an experimental app that enables patients to organize their medical records into collections, analogous to placing pictures in photo albums. These collections are based on the evolving understanding of the patients' past and ongoing health issues. The app also allows patients to add text notes to collections and their constituent records. By observing how patients used features to select records and assemble them into collections, our goal was to learn about their preferred mechanisms to complete these tasks and the challenges they would face in the wild. We also intended to become more informed about the various ways in which patients could and would like to use collections.MethodsWe conducted a think-aloud evaluation study with 14 participants on synthetic data. In session 1, we obtained feedback on the mechanics for creating and assembling collections and adding notes. In session 2, we focused on reviewing collections, finding data patterns within them, and retaining insights, as well as exploring use cases. We conducted reflexive thematic analysis on the transcribed feedback.ResultsCollections were useful for personal use (quick access to information, reflection on medical history, tracking health, journaling, and learning from past experiences) and clinical visits (preparation and raising physicians' awareness). Assembling EHR data into reliable collections could be difficult for typical patients due to considerable manual work and lack of medical knowledge. However, automated collection building could alleviate this issue. Furthermore, having EHR data organized in collections may have limited use. However, augmenting them with patient-generated data, which are entered with flexible richness and structure, could add context, elevate meaning, and improve actionability. Finally, collections might produce a misconstrued health picture, but bringing the physician in the loop for verification could increase their clinical validity.ConclusionsCollections can be a powerful tool for advancing patients' proactivity, awareness, and self-advocacy, potentially facilitating patient-centered care. However, patients need better support for incorporating their own everyday data and adding meaningful annotations for future reference. Improvements in the comprehensiveness, efficiency, and reliability of the collection assembly process through automation are also necessary.

Project description:BackgroundSpending time in natural environments is beneficial for human health, but many older adults have limited or no access to natural environments. Virtual reality technology may be a means to facilitate nature experiences, and so, there is a need for knowledge on how to design virtual restorative natural environments for older adults.ObjectiveThe aim of this study was to identify, implement, and test older adults' preferences and ideas regarding virtual natural environments.MethodsA total of 14 older adults (mean age 75, SD 5.9 years) participated in an iterative process to design such an environment. We used think-aloud protocols and qualitative content analysis and established questionnaires that targeted usability, affective aspects, and side effects. These data guided the design decisions for incremental implementations of a prototype.ResultsThe participants' preferences included trueness to reality in terms of rendition and behavior; traces of human activity and natural processes that trigger the imagination and provide believability; the ability to roam, explore, and interact with the environment; and a familiar, relatable environment that evokes memories. The iterative design process resulted in a prototype featuring many of the participants' ideas and preferences, including a seated locomotion technique, animals, a boat ride, the discovery of a boat wreck, and apple picking. The questionnaire results indicated high perceived usability, interest, and enjoyment; low pressure and tension; moderate value and usefulness; and negligible side effects.ConclusionsWe suggested 3 principles for virtual natural environments for older adults: realness, interactivity, and relatedness. Virtual natural environments should also provide a diversity of content and activities to accommodate the heterogeneity in older adults' preferences. These results can contribute to a framework for designing virtual natural environments for older adults. However, these findings need to be tested and potentially revised in future studies.

Project description:BackgroundThe rapid expansion in the use of electronic health records (EHR) has increased the number of medical errors originating in health information systems (HIS). The sociotechnical approach helps in understanding risks in the development, implementation, and use of EHR and health information technology (HIT) while accounting for complex interactions of technology within the health care system.ObjectiveThis study addresses two important questions: (1) "which of the common EHR error types are associated with perceived high- and extreme-risk severity ratings among EHR users?", and (2) "which variables are associated with high- and extreme-risk severity ratings?"MethodsThis study was a quantitative, non-experimental, descriptive study of EHR users. We conducted a cross-sectional web-based questionnaire study at the largest hospital district in Finland. Statistical tests included the reliability of the summative scales tested with Cronbach's alpha. Logistic regression served to assess the association of the independent variables to each of the eight risk factors examined.ResultsA total of 2864 eligible respondents provided the final data. Almost half of the respondents reported a high level of risk related to the error type "extended EHR unavailability". The lowest overall risk level was associated with "selecting incorrectly from a list of items". In multivariate analyses, profession and clinical unit proved to be the strongest predictors for high perceived risk. Physicians perceived risk levels to be the highest ( P<.001 in six of eight error types), while emergency departments, operating rooms, and procedure units were associated with higher perceived risk levels ( P<.001 in four of eight error types). Previous participation in eLearning courses on EHR-use was associated with lower risk for some of the risk factors.ConclusionsBased on a large number of Finnish EHR users in hospitals, this study indicates that HIT safety hazards should be taken very seriously, particularly in operating rooms, procedure units, emergency departments, and intensive care units/critical care units. Health care organizations should use proactive and systematic assessments of EHR risks before harmful events occur. An EHR training program should be compulsory for all EHR users in order to address EHR safety concerns resulting from the failure to use HIT appropriately.

Project description:BackgroundA critical gap in our knowledge about social media is whether we can alleviate accessibility barriers and challenges for individuals with traumatic brain injury (TBI), to improve their social participation and health. To do this, we need real-time information about these barriers and challenges, to design appropriate aids.ObjectiveThe aim of this study was to characterize the ways people with TBI accessed and used social media websites and understand unique challenges they faced.MethodsWe invited 8 adults with moderate to severe TBI to log onto their own Facebook page and use it as they regularly would while thinking aloud. Their comments were recorded and transcribed for qualitative analysis. We first analyzed participants' utterances using a priori coding based on a framework proposed by Meshi et al to classify adults' motives for accessing social media. We next used an open coding method to understand the challenges that people with TBI faced while using Facebook. In other words, we analyzed participants' needs for using Facebook and then identified Facebook features that made it challenging for them to meet those needs.ResultsParticipants used all categories of codes in the framework by Meshi et al and provided detailed feedback about the Facebook user interface. A priori coding revealed 2 dimensions that characterized participants' Facebook use: whether they were active or passive about posting and self-disclosure on Facebook and their familiarity and fluency in using Facebook. The open coding analysis revealed 6 types of challenges reported by participants with TBI, including difficulty with language production and interpretation, attention and information overload, perceptions of negativity and emotional contagion, insufficient guidance to use Facebook, concerns about web-based scams and frauds, and general accessibility concerns.ConclusionsResults showed that individuals with TBI used Facebook for the same reasons typical adults do, suggesting that it can help increase social communication and reduce isolation and loneliness. Participants also identified barriers, and we propose modifications that could improve access for individuals with brain injury. On the basis of identified functions and challenges, we conclude by proposing design ideas for social media support tools that can promote more active use of social media sites by adults with TBI.

Dataset Information

Participatory Design of an Electronic Cross-Facility Health Record (ECHR) System for Pediatric Palliative Care: A Think-Aloud Study.

Publications

Participatory Design of an Electronic Cross-Facility Health Record (ECHR) System for Pediatric Palliative Care: A Think-Aloud Study.

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