Creating synthetic patient data to support the design and evaluation of novel health information technology.
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ABSTRACT:
SUBMITTER: Pollack AH
PROVIDER: S-EPMC8120995 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:OBJECTIVE: As part of the Heath Information Technology for Economic and Clinical Health (HITECH) Act, the Office of the National Coordinator for Health Information Technology (ONC) implemented its Workforce Development Program, which included initiatives to train health information technology (HIT) professionals in 12 workforce roles, half of them in community colleges. To achieve this, the ONC tasked five universities with established informatics programs with creating curricular materials that could be used by community colleges. The five universities created 20 components that were made available for downloading from the National Training and Dissemination Center (NTDC) website. This paper describes an evaluation of the curricular materials by its intended audience of educators. METHODS: We measured the quantity of downloads from the NTDC site and administered a survey about the curricular materials to its registered users to determine use patterns and user characteristics. The survey was evaluated using mixed methods. Registered users downloaded nearly half a million units or components from the NTDC website. We surveyed these 9835 registered users. RESULTS: 1269 individuals completed all or part of the survey, of whom 339 identified themselves as educators (26.7% of all respondents). This paper addresses the survey responses of educators. DISCUSSION: Successful aspects of the curriculum included its breadth, convenience, hands-on and course planning capabilities. Several areas were identified for potential improvement. CONCLUSIONS: The ONC HIT curriculum met its goals for community college programs and will likely continue to be a valuable resource for the larger informatics community in the future.
| S-EPMC3994849 | biostudies-other
Project description:A patient-centered health system needs precise computable measurements to derive value. While validated patient-reported outcomes (PROs) are increasingly used in trials, their adoption in care remains limited and generally separated from the medical record. Further, absence of systematic processes for patient-led data submission excludes valuable data from digital devices that can potentially aid in contextualizing health status. With prior experience in developing apps for the Patient-Reported Outcomes Measurement Information System (PROMIS), we sought to make collecting patient-generated health data (PGHD) a fundamental property of health information technology at scale, and in an interoperable, standards-compliant fashion. We build upon the open SMART on FHIR (Fast Health Interoperability Resources) specification to create SMART Markers-a mobile device software framework encapsulating functionality needed for rapid deployment of both patient- and practitioner-facing PGHD apps. We refactored previously developed PROMIS apps to use SMART Markers for handling PGHD-request creation, on-device administration, and generation of a variety of PGHD types and submission of results to a FHIR server. Validation and conformance tests were performed on the generated output and app-reusability was demonstrated across two demo servers. App developers can import SMART Markers into their existing or new apps to readily leverage an interoperable PGHD capturing functionality out of the box, without having to reinvent the wheel. Our approach enables the creation of health system integrated, context-specific experiences for both patients and practitioners.
| S-EPMC6978521 | biostudies-literature
Project description:We identify and describe nine key, short-term, challenges to help healthcare organizations, health information technology developers, researchers, policymakers, and funders focus their efforts on health information technology-related patient safety. Categorized according to the stage of the health information technology lifecycle where they appear, these challenges relate to (1) developing models, methods, and tools to enable risk assessment; (2) developing standard user interface design features and functions; (3) ensuring the safety of software in an interfaced, network-enabled clinical environment; (4) implementing a method for unambiguous patient identification (1-4 Design and Development stage); (5) developing and implementing decision support which improves safety; (6) identifying practices to safely manage information technology system transitions (5 and 6 Implementation and Use stage); (7) developing real-time methods to enable automated surveillance and monitoring of system performance and safety; (8) establishing the cultural and legal framework/safe harbor to allow sharing information about hazards and adverse events; and (9) developing models and methods for consumers/patients to improve health information technology safety (7-9 Monitoring, Evaluation, and Optimization stage). These challenges represent key "to-do's" that must be completed before we can expect to have safe, reliable, and efficient health information technology-based systems required to care for patients.
| S-EPMC7510167 | biostudies-literature
Project description:Synthetic DNA is a growing alternative to electronic-based technologies in fields such as data storage, product tagging, or signal processing. Its value lies in its characteristic attributes, namely Watson-Crick base pairing, array synthesis, sequencing, toehold displacement and polymerase chain reaction (PCR) capabilities. In this review, we provide an overview of the most prevalent applications of synthetic DNA that could shape the future of information technology. We emphasize the reasons why the biomolecule can be a valuable alternative for conventional electronic-based media, and give insights on where the DNA-analog technology stands with respect to its electronic counterparts.
| S-EPMC8763860 | biostudies-literature
Project description:ObjectiveThe study sought to conduct a systematic review to explore the functions utilized by electronic cancer survivorship care planning interventions and assess their effects on patient and provider outcomes.Materials and methodsBased on PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analysis) guidelines, studies published from January 2000 to January 2020 were identified in PubMed, CINAHL, EMBASE, PsychINFO, Scopus, Web of Science, and the ACM Digital Library . The search combined terms for cancer, survivorship, care planning, and health information technology (HIT). Eligible studies evaluated the effects of a HIT intervention on usability, knowledge, process, or health-related outcomes. A total of 578 abstracts were reviewed, resulting in 60 manuscripts describing 40 studies. Thematic analyses were used to define meta-themes of system functions, and Fisher's exact tests were used to examine associations between functions and outcomes.ResultsPatients were the target end users for 18 interventions, while 12 targeted providers and 10 targeted both groups. Interventions used patient-reported outcomes collection (60%), automated content generation (58%), electronic sharing (40%), persistent engagement (28%), and communication features (20%). Overall, interventions decreased the time to create survivorship care plans (SCPs) and supported care planning knowledge and abilities, but results were mixed for effects on healthcare utilization, SCP sharing, and provoking anxiety. Persistent engagement features were associated with improvements in health or quality-of-life outcomes (17 studies, P = .003).ConclusionsFeatures that engaged users persistently over time were associated with better health and quality-of-life outcomes. Most systems have not capitalized on the potential of HIT to share SCPs across a care team and support care coordination.
| S-EPMC8449616 | biostudies-literature
Project description:ObjectiveTo systematically review studies assessing the effects of health information technology (health IT) on patient safety outcomes.Materials and methodsThe authors employed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement methods. MEDLINE, Cumulative Index to Nursing Allied Health (CINAHL), EMBASE, and Cochrane Library databases, from 2001 to June 2012, were searched. Descriptive and comparative studies were included that involved use of health IT in a clinical setting and measured effects on patient safety outcomes.ResultsData on setting, subjects, information technology implemented, and type of patient safety outcomes were all abstracted. The quality of the studies was evaluated by 2 independent reviewers (scored from 0 to 10). A total of 69 studies met inclusion criteria. Quality scores ranged from 1 to 9. There were 25 (36%) studies that found benefit of health IT on direct patient safety outcomes for the primary outcome measured, 43 (62%) studies that either had non-significant or mixed findings, and 1 (1%) study for which health IT had a detrimental effect. Neither the quality of the studies nor the rate of randomized control trials performed changed over time. Most studies that demonstrated a positive benefit of health IT on direct patient safety outcomes were inpatient, single-center, and either cohort or observational trials studying clinical decision support or computerized provider order entry.Discussion and conclusionMany areas of health IT application remain understudied and the majority of studies have non-significant or mixed findings. Our study suggests that larger, higher quality studies need to be conducted, particularly in the long-term care and ambulatory care settings.
| S-EPMC6375119 | biostudies-literature
Project description:ObjectiveOur aim is to develop a patient engagement technology that makes it easy for patients to access their own medical information and share it with others.Materials and methodsThis paper describes our design through an adapted Community Engagement Studio methodology to identify the needs and preferences of a diverse group of Latinx, African-American, and Asian-American individuals in the community. We use Human-Centered Design to interpret these needs and preferences to build a digital app platform, using national data standards, clinical data aggregators, and privacy-preserving solutions while maintaining the security and confidentiality of patients.ResultsWe designed and developed FHIRedApp, an app platform, that allows patients to access their data and to share that access as HL7® FHIR® application programming interfaces with third-party app developers. We accomplished 2 major tasks: first, to demonstrate the use of interoperability and authentication standards, such as HL7® FHIR and OAuth2, to help develop patient engagement technologies, and second, to co-develop and co-design FHIRedApp with active involvement of African-American, Latinx, and Asian-American community members. Usability results show high satisfaction rates for FHIRedApp.ConclusionThe development of FHIRedApp demonstrates how technology innovations using national interoperability standards can be informed through a methodology of community engagement and human-centered design that involves local racial and ethnic groups.
| S-EPMC8826978 | biostudies-literature
Project description:Over the last decade, health information technology (IT) has dramatically transformed medical practice in the United States. On May 11-12, 2017, the National Institute on Minority Health and Health Disparities, in partnership with the National Science Foundation and the National Health IT Collaborative for the Underserved, convened a scientific workshop, "Addressing Health Disparities with Health Information Technology," with the goal of ensuring that future research guides potential health IT initiatives to address the needs of health disparities populations. The workshop examined patient, clinician, and system perspectives on the potential role of health IT in addressing health disparities. Attendees were asked to identify and discuss various health IT challenges that confront underserved communities and propose innovative strategies to address them, and to involve these communities in this process. Community engagement, cultural competency, and patient-centered care were highlighted as key to improving health equity, as well as to promoting scalable, sustainable, and effective health IT interventions. Participants noted the need for more research on how health IT can be used to evaluate and address the social determinants of health. Expanding public-private partnerships was emphasized, as was the importance of clinicians and IT developers partnering and using novel methods to learn how to improve health care decision-making. Finally, to advance health IT and promote health equity, it will be necessary to record and capture health disparity data using standardized terminology, and to continuously identify system-level deficiencies and biases.
| S-EPMC6589829 | biostudies-literature
Project description:Health information technology (HIT) has great potential for increasing patient engagement. Pediatric hematopoietic cell transplantation (HCT) is a setting ripe for using HIT but in which little research exists. "BMT Roadmap" is a web-based application that integrates patient-specific information and includes several domains: laboratory results, medications, clinical trial details, photos of the healthcare team, trajectory of transplant process, and discharge checklist. BMT Roadmap was provided to 10 caregivers of patients undergoing first-time HCT. Research assistants performed weekly qualitative interviews throughout the patient's hospitalization and at discharge and day 100 to assess the impact of BMT Roadmap. Rigorous thematic analysis revealed 5 recurrent themes: emotional impact of the HCT process itself; critical importance of communication among patients, caregivers, and healthcare providers; ways in which BMT Roadmap was helpful during inpatient setting; suggestions for improving BMT Roadmap; and other strategies for organization and management of complex healthcare needs that could be incorporated into BMT Roadmap. Caregivers found the tool useful and easy to use, leading them to want even greater access to information. BMT Roadmap was feasible, with no disruption to inpatient care. Although this initial study is limited by the small sample size and single-institution experience, these initial findings are encouraging and support further investigation.
| S-EPMC7293064 | biostudies-literature
Project description:BackgroundLittle is known about whether health information technology (HIT) affects patient experiences with health care.ObjectiveTo develop HIT questions that assess patients care experiences not evaluated by existing ambulatory Consumer Assessment of Health Plans and Systems (CAHPS) measures.Research designWe reviewed published articles and conducted focus groups and cognitive testing to develop survey questions. We collected data, using mail and the internet, from patients of 69 physicians receiving care at an academic medical center and 2 regional integrated delivery systems in late 2009 and 2010. We evaluated questions and scales about HIT using factor analysis, item-scale correlations, and reliability (internal consistency and physician-level) estimates.ResultsWe found support for 3 HIT composites: doctor use of computer (2 items), e-mail (2 items), and helpfulness of provider's website (4 items). Corrected item-scale correlations were 0.37 for the 2 doctor use of computer items and 0.71 for the 2 e-mail items, and ranged from 0.50 to 0.60 for the provider's website items. Cronbach α was high for e-mail (0.83) and provider's website (0.75), but only 0.54 for doctor use of computer. As few as 50 responses per physician would yield reliability of 0.70 for e-mail and provider's website. Two HIT composites, doctor use of computer (P<0.001) and provider's website (P=0.02), were independent predictors of overall ratings of doctors.ConclusionsNew CAHPS HIT items were identified that measure aspects of patient experiences not assessed by the CAHPS C&G 1.0 survey.
| S-EPMC3525454 | biostudies-literature