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2.
Per Med ; : 1-4, 2024 Jul 04.
Artículo en Inglés | MEDLINE | ID: mdl-38963136

RESUMEN

In the transformative landscape of healthcare, personalized medicine emerges as a pivotal shift, harnessing genetic, environmental and lifestyle data to tailor medical treatments for enhanced outcomes and cost efficiency. Central to its success is public engagement and consent to share health data amidst rising data privacy concerns. To investigate European public opinion on this paradigm, we executed a comprehensive cross-sectional survey to capture the general public's views on personalized medicine and data-sharing modalities, including digital tools and electronic records. The survey was distributed in eight major European Union countries and the results aim at guiding future policymaking and trust-building measures for secure health data exchange. This article delineates our methodological approach, whereby survey findings will be expounded in subsequent publications.


[Box: see text].

3.
JMIR Form Res ; 8: e55732, 2024 Jul 09.
Artículo en Inglés | MEDLINE | ID: mdl-38980716

RESUMEN

BACKGROUND: Community health center (CHC) patients experience a disproportionately high prevalence of chronic conditions and barriers to accessing technologies that might support the management of these conditions. One such technology includes tools used for remote patient monitoring (RPM), the use of which surged during the COVID-19 pandemic. OBJECTIVE: The aim of this study was to assess how a CHC implemented an RPM program during the COVID-19 pandemic. METHODS: This retrospective case study used a mixed methods explanatory sequential design to evaluate a CHC's implementation of a suite of RPM tools during the COVID-19 pandemic. Analyses used electronic health record-extracted health outcomes data and semistructured interviews with the CHC's staff and patients participating in the RPM program. RESULTS: The CHC enrolled 147 patients in a hypertension RPM program. After 6 months of RPM use, mean systolic blood pressure (BP) was 13.4 mm Hg lower and mean diastolic BP 6.4 mm Hg lower, corresponding with an increase in hypertension control (BP<140/90 mm Hg) from 33.3% of patients to 81.5%. Considerable effort was dedicated to standing up the program, reinforced by organizational prioritization of chronic disease management, and by a clinician who championed program implementation. Noted barriers to implementation of the RPM program were limited initial training, lack of sustained support, and complexities related to the RPM device technology. CONCLUSIONS: While RPM technology holds promise for addressing chronic disease management, successful RPM program requires substantial investment in implementation support and technical assistance.

4.
Eval Health Prof ; : 1632787241263370, 2024 Jun 17.
Artículo en Inglés | MEDLINE | ID: mdl-38884607

RESUMEN

The objective of the study was to assess the consistency between self-reported demographic characteristics, health conditions, and healthcare use, and administrative healthcare records, in a sample of enrollees of an Indigenous health organization in Colombia. We conducted a phone survey of a random sample of 2113 enrollees September-2020/February-2021. Administrative health records were obtained for the sample. Using ICD-10 diagnostic codes, we identified individuals who had healthcare visits for diabetes, hypertension, and/or pregnancy. Using unique identifiers, we linked their survey data to the administrative dataset. Agreement percentages and Cohen's Kappa coefficients were calculated. Logistic regressions were performed for each health condition/state. Results showed high degree of agreement between data sources for sex and age, similar rates for diabetes and hypertension, 10% variation for pregnancy. Kappa statistics were in the moderate range. Age was significantly associated with agreement between data sources. Sex, language, and self-rated health were significant for diabetes. This is the first study with data from an Indigenous population assessing the consistency between self-reported data and administrative health records. Survey and administrative data produced similar results, suggesting that Anas Wauu can be confident in using their data for planning and research purposes, as part of the movement toward data sovereignty.

5.
JMIR AI ; 3: e47805, 2024 May 20.
Artículo en Inglés | MEDLINE | ID: mdl-38875667

RESUMEN

BACKGROUND: Passive mobile sensing provides opportunities for measuring and monitoring health status in the wild and outside of clinics. However, longitudinal, multimodal mobile sensor data can be small, noisy, and incomplete. This makes processing, modeling, and prediction of these data challenging. The small size of the data set restricts it from being modeled using complex deep learning networks. The current state of the art (SOTA) tackles small sensor data sets following a singular modeling paradigm based on traditional machine learning (ML) algorithms. These opt for either a user-agnostic modeling approach, making the model susceptible to a larger degree of noise, or a personalized approach, where training on individual data alludes to a more limited data set, giving rise to overfitting, therefore, ultimately, having to seek a trade-off by choosing 1 of the 2 modeling approaches to reach predictions. OBJECTIVE: The objective of this study was to filter, rank, and output the best predictions for small, multimodal, longitudinal sensor data using a framework that is designed to tackle data sets that are limited in size (particularly targeting health studies that use passive multimodal sensors) and that combines both user agnostic and personalized approaches, along with a combination of ranking strategies to filter predictions. METHODS: In this paper, we introduced a novel ranking framework for longitudinal multimodal sensors (FLMS) to address challenges encountered in health studies involving passive multimodal sensors. Using the FLMS, we (1) built a tensor-based aggregation and ranking strategy for final interpretation, (2) processed various combinations of sensor fusions, and (3) balanced user-agnostic and personalized modeling approaches with appropriate cross-validation strategies. The performance of the FLMS was validated with the help of a real data set of adolescents diagnosed with major depressive disorder for the prediction of change in depression in the adolescent participants. RESULTS: Predictions output by the proposed FLMS achieved a 7% increase in accuracy and a 13% increase in recall for the real data set. Experiments with existing SOTA ML algorithms showed an 11% increase in accuracy for the depression data set and how overfitting and sparsity were handled. CONCLUSIONS: The FLMS aims to fill the gap that currently exists when modeling passive sensor data with a small number of data points. It achieves this through leveraging both user-agnostic and personalized modeling techniques in tandem with an effective ranking strategy to filter predictions.

6.
J Med Internet Res ; 26: e49084, 2024 Jun 27.
Artículo en Inglés | MEDLINE | ID: mdl-38935430

RESUMEN

The Nordic countries are, together with the United States, forerunners in online record access (ORA), which has now become widespread. The importance of accessible and structured health data has also been highlighted by policy makers internationally. To ensure the full realization of ORA's potential in the short and long term, there is a pressing need to study ORA from a cross-disciplinary, clinical, humanistic, and social sciences perspective that looks beyond strictly technical aspects. In this viewpoint paper, we explore the policy changes in the European Health Data Space (EHDS) proposal to advance ORA across the European Union, informed by our research in a Nordic-led project that carries out the first of its kind, large-scale international investigation of patients' ORA-NORDeHEALTH (Nordic eHealth for Patients: Benchmarking and Developing for the Future). We argue that the EHDS proposal will pave the way for patients to access and control third-party access to their electronic health records. In our analysis of the proposal, we have identified five key principles for ORA: (1) the right to access, (2) proxy access, (3) patient input of their own data, (4) error and omission rectification, and (5) access control. ORA implementation today is fragmented throughout Europe, and the EHDS proposal aims to ensure all European citizens have equal online access to their health data. However, we argue that in order to implement the EHDS, we need more research evidence on the key ORA principles we have identified in our analysis. Results from the NORDeHEALTH project provide some of that evidence, but we have also identified important knowledge gaps that still need further exploration.


Asunto(s)
Registros Electrónicos de Salud , Humanos , Países Escandinavos y Nórdicos , Europa (Continente) , Unión Europea
7.
J Pers Med ; 14(6)2024 May 21.
Artículo en Inglés | MEDLINE | ID: mdl-38929767

RESUMEN

In 2019, the International Consortium for Personalised Medicine (ICPerMed) developed a vision on how the use of personalized medicine (PM) approaches will promote "next-generation" medicine in 2030 more firmly centered on the individual's personal characteristics, leading to improved health outcomes within sustainable healthcare systems through research, development, innovation, and implementation for the benefit of patients, citizens, and society. Nevertheless, there are significant hurdles that healthcare professionals, researchers, policy makers, and patients must overcome to implement PM. The ICPerMed aims to provide recommendations to increase stakeholders' awareness on actionable measures to be implemented for the realization of PM. Starting with best practice examples of PM together with consultation of experts and stakeholders, a careful analysis that underlined hurdles, opportunities, recommendations, and information, aiming at developing knowledge on the requirements for PM implementation in healthcare practices, has been provided. A pragmatic roadmap has been defined for PM integration into healthcare systems, suggesting actions to overcome existing barriers and harness the potential of PM for improved health outcomes. In fact, to facilitate the adoption of PM by diverse stakeholders, it is mandatory to have a comprehensive set of resources tailored to stakeholder needs in critical areas of PM. These include engagement strategies, collaboration frameworks, infrastructure development, education and training programs, ethical considerations, resource allocation guidelines, regulatory compliance, and data management and privacy.

8.
Int J Qual Stud Health Well-being ; 19(1): 2367841, 2024 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-38920110

RESUMEN

PURPOSE: As sharing on social media has become an integrated part of everyday life, health and public health actors have started to show interest in the potential of people's peer-to-peer sharing of health-related personal information (HRI) for health interventions. In this article we focus on how people make sense of sharing HRI on social media. METHODS: Twenty-two people between the ages 40 and 60 who had taken part in a regional health intervention were interviewed. Using theories about social media sharing, we explore their understandings and negotiations about whether, how much, and how to share HRI and discuss the results in relation to peer-to-peer sharing as a strategy in interventions. RESULTS: We identified three aspects that were perceived as particularly risky: loss of control, effects on identity, and affecting others negatively, along with strategies that were used to manage risks in practice: avoiding sharing, allocating, and embedding HRI. CONCLUSIONS: By allocating and embedding HRI, people can unlock motivating affordances for health work. However, strategies to manage risks can also be counterproductive. For actors to provide equality in health promotion, initiatives that include social media sharing need to be mindful of the sometimes counterproductive effects this may have on people's engagement.


Asunto(s)
Difusión de la Información , Grupo Paritario , Salud Pública , Medios de Comunicación Sociales , Humanos , Adulto , Masculino , Femenino , Persona de Mediana Edad , Promoción de la Salud/métodos , Motivación , Investigación Cualitativa
9.
Toxins (Basel) ; 16(6)2024 May 28.
Artículo en Inglés | MEDLINE | ID: mdl-38922146

RESUMEN

As multiple indications for botulinum toxin injections (BTIs) can coexist for neurological patients, there are to date no description of concomitant injections (CIs) to treat both spasticity and neurogenic detrusor overactivity incontinence (NDOI) in patients with spinal cord injuries (SCIs) and multiple sclerosis (MS). We therefore identified patients followed at our institution by health data hub digging, using a specific procedure coding system in use in France, who have been treated at least once with detrusor and skeletal muscle BTIs within the same 1-month period, over the past 5 years (2017-2021). We analyzed 72 patients representing 319 CIs. Fifty (69%) were male, and the patients were mostly SCI (76%) and MS (18%) patients and were treated by a mean number of CIs of 4.4 ± 3.6 [1-14]. The mean cumulative dose was 442.1 ± 98.8 U, and 95% of CIs were performed within a 72 h timeframe. Among all CIs, five patients had symptoms evocative of distant spread but only one had a confirmed pathological jitter in single-fiber EMG. Eleven discontinued CIs for surgical alternatives: enterocystoplasty (five), tenotomy (three), intrathecal baclofen (two) and neurotomy (one). Concomitant BTIs for treating both spasticity and NDOI at the same time appeared safe when performed within a short delay and in compliance with actual knowledge for maximum doses.


Asunto(s)
Espasticidad Muscular , Traumatismos de la Médula Espinal , Vejiga Urinaria Hiperactiva , Humanos , Espasticidad Muscular/tratamiento farmacológico , Masculino , Femenino , Estudios Retrospectivos , Persona de Mediana Edad , Vejiga Urinaria Hiperactiva/tratamiento farmacológico , Adulto , Traumatismos de la Médula Espinal/complicaciones , Traumatismos de la Médula Espinal/tratamiento farmacológico , Esclerosis Múltiple/complicaciones , Esclerosis Múltiple/tratamiento farmacológico , Fármacos Neuromusculares/administración & dosificación , Fármacos Neuromusculares/uso terapéutico , Toxinas Botulínicas Tipo A/administración & dosificación , Toxinas Botulínicas Tipo A/efectos adversos , Toxinas Botulínicas Tipo A/uso terapéutico , Vejiga Urinaria Neurogénica/tratamiento farmacológico , Anciano , Inyecciones Intramusculares , Resultado del Tratamiento
10.
Emerg Med J ; 2024 Jun 04.
Artículo en Inglés | MEDLINE | ID: mdl-38834288

RESUMEN

Electronic patient records (EPRs) are potentially valuable sources of data for service development or research but often contain large amounts of missing data. Using complete case analysis or imputation of missing data seem like simple solutions, and are increasingly easy to perform in software packages, but can easily distort data and give misleading results if used without an understanding of missingness. So, knowing about patterns of missingness, and when to get expert data science (data engineering and analytics) help, will be a fundamental future skill for emergency physicians. This will maximise the good and minimise the harm of the easy availability of large patient datasets created by the introduction of EPRs.

11.
JMIR Med Inform ; 12: e51350, 2024 Jun 18.
Artículo en Inglés | MEDLINE | ID: mdl-38889087

RESUMEN

Unlabelled: The extensive utilization of personal health data is one of the key success factors of modern medical research. Obtaining consent to the use of such data during clinical care, however, bears the risk of low and unequal approval rates and risk of consequent methodological problems in the scientific use of the data. In view of these shortcomings, and of the proven willingness of people to contribute to medical research by sharing personal health data, the paradigm of informed consent needs to be reconsidered. The European General Data Protection Regulation gives the European member states considerable leeway with regard to permitting the research use of health data without consent. Following this approach would however require alternative offers of information that compensate for the lack of direct communication with experts during medical care. We therefore introduce the concept of "health data literacy," defined as the capacity to find, understand, and evaluate information about the risks and benefits of the research use of personal health data and to act accordingly. Specifically, health data literacy includes basic knowledge about the goals and methods of data-rich medical research and about the possibilities and limits of data protection. Although the responsibility for developing the necessary resources lies primarily with those directly involved in data-rich medical research, improving health data literacy should ultimately be of concern to everyone interested in the success of this type of research.

12.
JMIR Med Educ ; 10: e52290, 2024 Jun 17.
Artículo en Inglés | MEDLINE | ID: mdl-38889091

RESUMEN

Unlabelled: A momentous amount of health data has been and is being collected. Across all levels of health care, data are driving decision-making and impacting patient care. A new field of knowledge and role for those in health care is emerging-the need for a health data-informed workforce. In this viewpoint, we describe the approaches needed to build a health data-informed workforce, a new and critical skill for the health care ecosystem.


Asunto(s)
Fuerza Laboral en Salud , Humanos , Atención a la Salud , Personal de Salud/estadística & datos numéricos
13.
Front Med (Lausanne) ; 11: 1377209, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38903818

RESUMEN

Introduction: Obtaining real-world data from routine clinical care is of growing interest for scientific research and personalized medicine. Despite the abundance of medical data across various facilities - including hospitals, outpatient clinics, and physician practices - the intersectoral exchange of information remains largely hindered due to differences in data structure, content, and adherence to data protection regulations. In response to this challenge, the Medical Informatics Initiative (MII) was launched in Germany, focusing initially on university hospitals to foster the exchange and utilization of real-world data through the development of standardized methods and tools, including the creation of a common core dataset. Our aim, as part of the Medical Informatics Research Hub in Saxony (MiHUBx), is to extend the MII concepts to non-university healthcare providers in a more seamless manner to enable the exchange of real-world data among intersectoral medical sites. Methods: We investigated what services are needed to facilitate the provision of harmonized real-world data for cross-site research. On this basis, we designed a Service Platform Prototype that hosts services for data harmonization, adhering to the globally recognized Health Level 7 (HL7) Fast Healthcare Interoperability Resources (FHIR) international standard communication format and the Observational Medical Outcomes Partnership (OMOP) common data model (CDM). Leveraging these standards, we implemented additional services facilitating data utilization, exchange and analysis. Throughout the development phase, we collaborated with an interdisciplinary team of experts from the fields of system administration, software engineering and technology acceptance to ensure that the solution is sustainable and reusable in the long term. Results: We have developed the pre-built packages "ResearchData-to-FHIR," "FHIR-to-OMOP," and "Addons," which provide the services for data harmonization and provision of project-related real-world data in both the FHIR MII Core dataset format (CDS) and the OMOP CDM format as well as utilization and a Service Platform Prototype to streamline data management and use. Conclusion: Our development shows a possible approach to extend the MII concepts to non-university healthcare providers to enable cross-site research on real-world data. Our Service Platform Prototype can thus pave the way for intersectoral data sharing, federated analysis, and provision of SMART-on-FHIR applications to support clinical decision making.

14.
Artículo en Inglés | MEDLINE | ID: mdl-38907738

RESUMEN

OBJECTIVE: To use workflow execution models to highlight new considerations for patient-centered clinical decision support policies (PC CDS), processes, procedures, technology, and expertise required to support new workflows. METHODS: To generate and refine models, we used (1) targeted literature reviews; (2) key informant interviews with 6 external PC CDS experts; (3) model refinement based on authors' experience; and (4) validation of the models by a 26-member steering committee. RESULTS AND DISCUSSION: We identified 7 major issues that provide significant challenges and opportunities for healthcare systems, researchers, administrators, and health IT and app developers. Overcoming these challenges presents opportunities for new or modified policies, processes, procedures, technology, and expertise to: (1) Ensure patient-generated health data (PGHD), including patient-reported outcomes (PROs), are documented, reviewed, and managed by appropriately trained clinicians, between visits and after regular working hours. (2) Educate patients to use connected medical devices and handle technical issues. (3) Facilitate collection and incorporation of PGHD, PROs, patient preferences, and social determinants of health into existing electronic health records. (4) Troubleshoot erroneous data received from devices. (5) Develop dashboards to display longitudinal patient-reported data. (6) Provide reimbursement to support new models of care. (7) Support patient engagement with remote devices. CONCLUSION: Several new policies, processes, technologies, and expertise are required to ensure safe and effective implementation and use of PC CDS. As we gain more experience implementing and working with PC CDS, we should be able to begin realizing the long-term positive impact on patient health that the patient-centered movement in healthcare promises.

15.
J Biomed Inform ; 156: 104670, 2024 Jun 14.
Artículo en Inglés | MEDLINE | ID: mdl-38880235

RESUMEN

BACKGROUND: Art. 50 of the proposal for a Regulation on the European Health Data Space (EHDS) states that "health data access bodies shall provide access to electronic health data only through a secure processing environment, with technical and organizational measures and security and interoperability requirements". OBJECTIVE: To identify specific security measures that nodes participating in health data spaces shall implement based on the results of the IMPaCT-Data project, whose goal is to facilitate the exchange of electronic health records (EHR) between public entities based in Spain and the secondary use of this information for precision medicine research in compliance with the General Data Protection Regulation (GDPR). DATA AND METHODS: This article presents an analysis of 24 out of a list of 72 security measures identified in the Spanish National Security Scheme (ENS) and adopted by members of the federated data infrastructure developed during the IMPaCT-Data project. RESULTS: The IMPaCT-Data case helps clarify roles and responsibilities of entities willing to participate in the EHDS by reconciling technical system notions with the legal terminology. Most relevant security measures for Data Space Gatekeepers, Enablers and Prosumers are identified and explained. CONCLUSION: The EHDS can only be viable as long as the fiduciary duty of care of public health authorities is preserved; this implies that the secondary use of personal data shall contribute to the public interest and/or to protect the vital interests of the data subjects. This condition can only be met if all nodes participating in a health data space adopt the appropriate organizational and technical security measures necessary to fulfill their role.

16.
Global Health ; 20(1): 45, 2024 Jun 06.
Artículo en Inglés | MEDLINE | ID: mdl-38845021

RESUMEN

BACKGROUND: In conflict settings, as it is the case in Syria, it is crucial to enhance health information management to facilitate an effective and sustainable approach to strengthening health systems in such contexts. In this study, we aim to provide a baseline understanding of the present state of health information management in Northwest Syria (NWS) to better plan for strengthening the health information system of the area that is transitioning to an early-recovery stage. METHODS: A combination of questionnaires and subsequent interviews was used for data collection. Purposive sampling was used to select twenty-one respondents directly involved in managing and directing different domains of health information in the NWS who worked with local NGOs, INGOs, UN-agencies, or part of the Health Working Group. A scoring system for each public health domain was constructed based on the number and quality of the available datasets for these domains, which were established by Checci and others. RESULTS & CONCLUSIONS: Reliable and aggregate health information in the NWS is limited, despite some improvements made over the past decade. The conflict restricted and challenged efforts to establish a concentrated and harmonized HIS in the NWS, which led to a lack of leadership, poor coordination, and duplication of key activities. Although the UN established the EWARN and HeRAMS as common data collection systems in the NWS, they are directed toward advocacy and managed by external experts with little participation or access from local stakeholders to these datasets. RECOMMENDATIONS: There is a need for participatory approaches and the empowerment of local actors and local NGOs, cooperation between local and international stakeholders to increase access to data, and a central domain for planning, organization, and harmonizing the process. To enhance the humanitarian health response in Syria and other crisis areas, it is imperative to invest in data collection and utilisation, mHealth and eHealth technologies, capacity building, and robust technical and autonomous leadership.


Asunto(s)
Gestión de la Información en Salud , Siria , Humanos , Encuestas y Cuestionarios , Conflictos Armados
17.
J Med Internet Res ; 26: e50295, 2024 Jun 28.
Artículo en Inglés | MEDLINE | ID: mdl-38941134

RESUMEN

Artificial intelligence (AI)-based clinical decision support systems are gaining momentum by relying on a greater volume and variety of secondary use data. However, the uncertainty, variability, and biases in real-world data environments still pose significant challenges to the development of health AI, its routine clinical use, and its regulatory frameworks. Health AI should be resilient against real-world environments throughout its lifecycle, including the training and prediction phases and maintenance during production, and health AI regulations should evolve accordingly. Data quality issues, variability over time or across sites, information uncertainty, human-computer interaction, and fundamental rights assurance are among the most relevant challenges. If health AI is not designed resiliently with regard to these real-world data effects, potentially biased data-driven medical decisions can risk the safety and fundamental rights of millions of people. In this viewpoint, we review the challenges, requirements, and methods for resilient AI in health and provide a research framework to improve the trustworthiness of next-generation AI-based clinical decision support.


Asunto(s)
Inteligencia Artificial , Sistemas de Apoyo a Decisiones Clínicas , Humanos
18.
Artículo en Alemán | MEDLINE | ID: mdl-38837053

RESUMEN

The Medical Informatics Initiative (MII) funded by the Federal Ministry of Education and Research (BMBF) 2016-2027 is successfully laying the foundations for data-based medicine in Germany. As part of this funding, 51 new professorships, 21 junior research groups, and various new degree programs have been established to strengthen teaching, training, and continuing education in the field of medical informatics and to improve expertise in medical data sciences. A joint decentralized federated research data infrastructure encompassing the entire university medical center and its partners was created in the form of data integration centers (DIC) at all locations and the German Portal for Medical Research Data (FDPG) as a central access point. A modular core dataset (KDS) was defined and implemented for the secondary use of patient treatment data with consistent use of international standards (e.g., FHIR, SNOMED CT, and LOINC). An officially approved nationwide broad consent was introduced as the legal basis. The first data exports and data use projects have been carried out, embedded in an overarching usage policy and standardized contractual regulations. The further development of the MII health research data infrastructures within the cooperative framework of the Network of University Medicine (NUM) offers an excellent starting point for a German contribution to the upcoming European Health Data Space (EHDS), which opens opportunities for Germany as a medical research location.


Asunto(s)
Investigación Biomédica , Informática Médica , Humanos , Investigación Biomédica/organización & administración , Alemania , Investigación sobre Servicios de Salud/organización & administración , Modelos Organizacionales
19.
JMIR Med Inform ; 12: e49785, 2024 Jun 25.
Artículo en Inglés | MEDLINE | ID: mdl-38917448

RESUMEN

BACKGROUND: Self-administered web-based questionnaires are widely used to collect health data from patients and clinical research participants. REDCap (Research Electronic Data Capture; Vanderbilt University) is a global, secure web application for building and managing electronic data capture. Unfortunately, stakeholder needs and preferences of electronic data collection via REDCap have rarely been studied. OBJECTIVE: This study aims to survey REDCap researchers and administrators to assess their experience with REDCap, especially their perspectives on the advantages, challenges, and suggestions for the enhancement of REDCap as a data collection tool. METHODS: We conducted a web-based survey with representatives of REDCap member organizations in the United States. The survey captured information on respondent demographics, quality of patient-reported data collected via REDCap, patient experience of data collection with REDCap, and open-ended questions focusing on the advantages, challenges, and suggestions to enhance REDCap's data collection experience. Descriptive and inferential analysis measures were used to analyze quantitative data. Thematic analysis was used to analyze open-ended responses focusing on the advantages, disadvantages, and enhancements in data collection experience. RESULTS: A total of 207 respondents completed the survey. Respondents strongly agreed or agreed that the data collected via REDCap are accurate (188/207, 90.8%), reliable (182/207, 87.9%), and complete (166/207, 80.2%). More than half of respondents strongly agreed or agreed that patients find REDCap easy to use (165/207, 79.7%), could successfully complete tasks without help (151/207, 72.9%), and could do so in a timely manner (163/207, 78.7%). Thematic analysis of open-ended responses yielded 8 major themes: survey development, user experience, survey distribution, survey results, training and support, technology, security, and platform features. The user experience category included more than half of the advantage codes (307/594, 51.7% of codes); meanwhile, respondents reported higher challenges in survey development (169/516, 32.8% of codes), also suggesting the highest enhancement suggestions for the category (162/439, 36.9% of codes). CONCLUSIONS: Respondents indicated that REDCap is a valued, low-cost, secure resource for clinical research data collection. REDCap's data collection experience was generally positive among clinical research and care staff members and patients. However, with the advancements in data collection technologies and the availability of modern, intuitive, and mobile-friendly data collection interfaces, there is a critical opportunity to enhance the REDCap experience to meet the needs of researchers and patients.

20.
J Clin Epidemiol ; 172: 111430, 2024 Jun 14.
Artículo en Inglés | MEDLINE | ID: mdl-38880439

RESUMEN

OBJECTIVES: Conducting longitudinal health research about people experiencing homelessness poses unique challenges. Identification through administrative data permits large, cost-effective studies; however, case validity in Ontario is unknown after a 2018 Canada-wide policy change mandating homelessness coding in hospital databases. We validated case definitions for identifying homelessness using Ontario health administrative databases after introduction of this coding mandate. STUDY DESIGN AND SETTING: We assessed 42 case definitions in a representative sample of people experiencing homelessness in Toronto (n = 640) from whom longitudinal housing history (ranging from 2018 to 2022) was obtained, and a randomly selected sample of presumably housed people (n = 128,000) in Toronto. We evaluated sensitivity, specificity, positive and negative predictive values, and positive likelihood ratios to select an optimal definition, and compared the resulting true positives against false positives and false negatives to identify potential causes of misclassification. RESULTS: The optimal case definition included any homelessness indicator during a hospital-based encounter within 180 days of a period of homelessness (sensitivity = 52.9%; specificity = 99.5%). For periods of homelessness with ≥1 hospital-based healthcare encounter, the optimal case definition had greatly improved sensitivity (75.1%) while retaining excellent specificity (98.5%). Review of false positives suggested that homeless status is sometimes erroneously carried forward in healthcare databases after an individual transitioned out of homelessness. CONCLUSION: Case definitions to identify homelessness using Ontario health administrative data exhibit moderate to good sensitivity and excellent specificity. Sensitivity has more than doubled since the implementation of a national coding mandate. Mandatory collection and reporting of homelessness information within administrative data present invaluable opportunities for advancing research on the health and healthcare needs of people experiencing homelessness.

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