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1.
J Med Internet Res ; 26: e54645, 2024 Apr 24.
Artículo en Inglés | MEDLINE | ID: mdl-38657229

RESUMEN

BACKGROUND: Understanding patient preference regarding taking tablet or capsule formulations plays a pivotal role in treatment efficacy and adherence. Therefore, these preferences should be taken into account when designing formulations and prescriptions. OBJECTIVE: This study investigates the factors affecting patient preference in patients who have difficulties swallowing large tablets or capsules and aims to identify appropriate sizes for tablets and capsules. METHODS: A robust data set was developed based on a questionnaire survey conducted from December 1, 2022, to December 7, 2022, using the harmo smartphone app operated by harmo Co, Ltd. The data set included patient input regarding their tablet and capsule preferences, personal health records (including dispensing history), and drug formulation information (available from package inserts). Based on the medication formulation information, 6 indices were set for each of the tablets or capsules that were considered difficult to swallow owing to their large size and concomitant tablets or capsules (used as controls). Receiver operating characteristic (ROC) analysis was used to evaluate the performance of each index. The index demonstrating the highest area under the curve of the ROC was selected as the best index to determine the tablet or capsule size that leads to swallowing difficulties. From the generated ROCs, the point with the highest discriminative performance that maximized the Youden index was identified, and the optimal threshold for each index was calculated. Multivariate logistic regression analysis was performed to identify the risk factors contributing to difficulty in swallowing oversized tablets or capsules. Additionally, decision tree analysis was performed to estimate the combined risk from several factors, using risk factors that were significant in the multivariate logistic regression analysis. RESULTS: This study analyzed 147 large tablets or capsules and 624 control tablets or capsules. The "long diameter + short diameter + thickness" index (with a 21.5 mm threshold) was identified as the best indicator for causing swallowing difficulties in patients. The multivariate logistic regression analysis (including 132 patients with swallowing difficulties and 1283 patients without) results identified the following contributory risk factors: aged <50 years (odds ratio [OR] 1.59, 95% CI 1.03-2.44), female (OR 2.54, 95% CI 1.70-3.78), dysphagia (OR 3.54, 95% CI 2.22-5.65), and taking large tablets or capsules (OR 9.74, 95% CI 5.19-18.29). The decision tree analysis results suggested an elevated risk of swallowing difficulties for patients with taking large tablets or capsules. CONCLUSIONS: This study identified the most appropriate index and threshold for indicating that a given tablet or capsule size will cause swallowing difficulties, as well as the contributory risk factors. Although some sampling biases (eg, only including smartphone users) may exist, our results can guide the design of patient-friendly formulations and prescriptions, promoting better medication adherence.


Asunto(s)
Cápsulas , Registros Electrónicos de Salud , Comprimidos , Humanos , Femenino , Masculino , Persona de Mediana Edad , Adulto , Anciano , Registros de Salud Personal , Trastornos de Deglución , Deglución , Encuestas y Cuestionarios , Prioridad del Paciente/estadística & datos numéricos
2.
J UOEH ; 46(1): 67-72, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38479876

RESUMEN

The exact definition of a personal health record (PHR) is not clear, but it is generally defined as an electronic record of an individual's medical examination results and medication history that can be accurately tracked by the individual and family members. There are many opportunities to obtain personal PHR data in the field of occupational health, and the amount of information in a worker's PHR is enormous. It is necessary in this field to comprehensively integrate and accumulate not only information from medical examinations, but also records of the work environment and work records as personal health information.


Asunto(s)
Registros de Salud Personal , Salud Laboral
3.
Sichuan Da Xue Xue Bao Yi Xue Ban ; 55(2): 418-424, 2024 Mar 20.
Artículo en Zh | MEDLINE | ID: mdl-38645871

RESUMEN

Objective: To investigate the application of personal health record (PHR) and chronic disease management platform established on the basis of patient portal system (PPS) in managing older adults with coronary heart disease and to examine the effect on patients' self-care ability, coping mode, and quality of life. Methods: A total of 532 elderly patients with coronary heart disease were included in the study. All the participants enrolled were admitted to a tertiary-care hospital between January 2019 and June 2021. They were randomly assigned to the study group (269 cases) and the control group (263 cases). Patients in the control group were discharged with the routine discharge procedures and received the routine follow-up care. On the other hand, patients in the study group were discharged and followed up through the PHR and chronic disease management platform established on the basis of PPS. After 6 months, 12 months, and 18 months of patient management, the Exercise of Self-Care Agency (ESCA) Scale, Medical Coping Modes Questionnaire (MCMQ) and Seattle Angina Questionnaire (SAQ) were used to evaluate the patients' self-care ability, coping mode, and quality of life, respectively. The patient management effects of the two groups were analyzed. Results: Before the management programs started, there was no statistically significant difference in the scores for the scales between the two groups of patients. After 6 months, 12 months, and 18 months of patient management, the ESCA scores of both groups were higher than those before patient management started (P<0.05). Facing scores in the MCMQ of both groups were higher than those before patient management started (P<0.05), while the scores for avoidance and yielding were lower than those before patient management started (P<0.05). The SAQ scores of both groups were higher than those before patient management started (P<0.05). After 6 months, 12 months and 18 months of patient management, the ESCA scores of the study group were always higher compared with those of the control group (P<0.05). The facing score of the study group was higher, while the scores for avoidance and yielding were lower compared with those of the control group (P<0.05). The SAQ scores of the study group were higher compared with those of the control group (P<0.05). The medication compliance rate in the study group (83.27%) was higher than that in the control group (69.96%) (P<0.05). The incidence of adverse cardiovascular events in the study group (4.09%) was lower than that in the control group (10.27%) (P<0.05). The average times of emergency treatment and readmission in the study group were lower compared with those of the control group (P<0.05). The patient satisfaction score of the study group was higher compared with that of the control group (P<0.05). Conclusion: The PHR and chronic disease management platform established on the basis of PPS can increase the convenient access to medical care among elderly patients with coronary heart disease, which is conducive to improving their self-care ability, coping mode, and quality of life. In addition, the patient management effect is good.


Asunto(s)
Enfermedad Coronaria , Portales del Paciente , Calidad de Vida , Humanos , Enfermedad Coronaria/terapia , Anciano , Enfermedad Crónica , Masculino , Femenino , Autocuidado , Encuestas y Cuestionarios , Adaptación Psicológica , Manejo de la Enfermedad
4.
Diabet Med ; 40(7): e15085, 2023 07.
Artículo en Inglés | MEDLINE | ID: mdl-36924001

RESUMEN

AIMS: eHealth applications have the potential to enable patients to take more control over managing their own health, helping to delay and prevent complications. My Diabetes My Way (MDMW) is an electronic personal health record/educational platform available to people with diabetes in Scotland. This study aims to assess user experience with respect to demographic subgroups, examine effectiveness of previous improvements made to the platform and inform its ongoing development. METHODS: All active MDMW users (22,665) were invited to take part in a questionnaire combining Likert scale and free-response items relating to system utility. Likert responses were used to generate a 'utility score'. This was used in regression analyses to determine predictors of system utility scoring. Free-response answers were analysed thematically and themes were generated. RESULTS: A total of 4713 (21%) MDMW users responded to the questionnaire. Most agreed that MDMW helps them to track changes over time, prepare for face-to-face consultations, remember information discussed in consultations and reduced the need to contact their general practitioner. Free-response answers showed that users valued earlier enhancements made to the site (e.g. linking Fitbit data), and highlighted areas needing further improvement. Evidence of the 'digital divide' was seen in respondent demographics, and some users mentioned 'lack of digital skills' as a barrier to engaging with the platform. CONCLUSIONS: User experience of MDMW was positive. Users agreed with statements that MDMW facilitates diabetes self management. Several areas of potential improvement were identified, including linking more wearable device data, and assisting/directing users to gain the digital skills required to engage fully with MDMW.


Asunto(s)
Diabetes Mellitus , Registros de Salud Personal , Humanos , Mejoramiento de la Calidad , Diabetes Mellitus/epidemiología , Diabetes Mellitus/terapia , Escocia/epidemiología , Electrónica
5.
BMC Health Serv Res ; 23(1): 1398, 2023 Dec 12.
Artículo en Inglés | MEDLINE | ID: mdl-38087311

RESUMEN

BACKGROUND: Patient-provider communication can be assessed by the patient-centered communication (PCC) score. With rapid development of electronic health (eHealth) information usage, we are uncertain of their role in PCC. Our study aims to determine the association between PCC and eHealth usage with the analysis of national representative survey data. METHODS: This is a cross sectional analysis using the Health Information National Trends Survey 5 (HINTS 5) cycle 1 to cycle 4 data (2017-2020). Seven specific questions were used for PCC assessment, and eHealth usage was divided into two types (private-eHealth and public-eHealth usage). A multivariate logistic regression was performed to determine the association between PCC and eHealth usage after the adjustment of other social, demographic, and clinical variables. RESULTS: Our study analyzed a total of 13,055 unweighted participants representing a weighted population of 791,877,728. Approximately 43% of individuals used private eHealth and 19% used public eHealth. The adjusted odds ratio (AOR) of private-eHealth usage associated with positive PCC was 1.17 (95% CI 1.02-1.35, p = 0.027). The AOR of public-eHealth usage associated with positive PCC was 0.84 (95% CI 0.71-0.99, p = 0.043). CONCLUSION: Our study found that eHealth usage association with PCC varies. Private-eHealth usage was positively associated with PCC, whereas public-eHealth usage was negatively associated with PCC.


Asunto(s)
Telemedicina , Humanos , Estudios Transversales , Comunicación , Encuestas y Cuestionarios , Atención Dirigida al Paciente
6.
BMC Med Inform Decis Mak ; 23(1): 116, 2023 07 10.
Artículo en Inglés | MEDLINE | ID: mdl-37430242

RESUMEN

BACKGROUND: Personal Health Records (PHRs) are designed to fulfill the goals of electronic health (eHealth) and empower the individual in the process of self-care. Integrated PHR can improve the quality of care, strengthen the patient-healthcare provider relationship, and reduce healthcare costs. Still, the process of PHR acceptance and use has been slow and mainly hindered by people's concerns about the security of their personal health information. Thus, the present study aimed to identify the Integrated PHR security requirements and mechanisms. METHODS: In this applied study, PHR security requirements were identified with a literature review of (library sources, research articles, scientific documents, and reliable websites). The identified requirements were classified, and a questionnaire was developed accordingly. Thirty experts completed the questionnaire in a two-round Delphi technique, and the data were analyzed by descriptive statistics. RESULTS: The PHR security requirements were identified and classified into seven dimensions confidentiality, availability, integrity, authentication, authorization, non-repudiation, and right of access, each dimension having certain mechanisms. On average, the experts reached an agreement about the mechanisms of confidentiality (94.67%), availability (96.67%), integrity (93.33%), authentication (100%), authorization (97.78%), non-repudiation (100%), and right of access (90%). CONCLUSION: Integrated PHR security is a requirement for its acceptance and use. To design a useful and reliable integrated PHR, system designers, health policymakers, and healthcare organizations must identify and apply security requirements to guarantee the privacy and confidentiality of data.


Asunto(s)
Electrónica , Registros de Salud Personal , Humanos , Costos de la Atención en Salud , Instituciones de Salud , Privacidad
7.
Sensors (Basel) ; 23(7)2023 Mar 25.
Artículo en Inglés | MEDLINE | ID: mdl-37050511

RESUMEN

In this study, we propose the direct diagnosis of thyroid cancer using a small probe. The probe can easily check the abnormalities of existing thyroid tissue without relying on experts, which reduces the cost of examining thyroid tissue and enables the initial self-examination of thyroid cancer with high accuracy. A multi-layer silicon-structured probe module is used to photograph light scattered by elastic changes in thyroid tissue under pressure to obtain a tactile image of the thyroid gland. In the thyroid tissue under pressure, light scatters to the outside depending on the presence of malignant and positive properties. A simple and easy-to-use tactile-sensation imaging system is developed by documenting the characteristics of the organization of tissues by using non-invasive technology for analyzing tactile images and judging the properties of abnormal tissues.


Asunto(s)
Neoplasias de la Tiroides , Humanos , Neoplasias de la Tiroides/diagnóstico por imagen , Tacto , Diagnóstico por Imagen
8.
BMC Health Serv Res ; 22(1): 776, 2022 Jun 13.
Artículo en Inglés | MEDLINE | ID: mdl-35698220

RESUMEN

BACKGROUND: Adoption of a personal health record (PHR) depends on its usability and perceived usefulness. Therefore, we aimed to assess the usability and perceived usefulness of an online PHR used for medication reconciliation and to assess the association between patient-, clinical-, hospital-, and ICT-related factors and the usability and perceived usefulness at both the in- and outpatient clinics. METHODS: A multicenter cross-sectional study was conducted with patients with either an outpatient visit (rheumatology ward) or planned admission in the hospital (cardiology, neurology, internal medicine or pulmonary wards). All patients received an invitation to update their medication list in the PHR 2 weeks prior to their appointment. One month after the hospital visit, PHR-users were asked to rate usability (using the System Usability Scale (SUS)) and perceived usefulness on a 5-point Likert scale. The usability and perceived usefulness were classified according to the adjective rating scale of Bangor et al. The usability was furthermore dichotomized in the categories: low (SUS between 0 and 51) and good (SUS 51-100) usability. Associations between patient-, clinical-, hospital-, and ICT-related factors and the usability and perceived usefulness were analysed. RESULTS: 255 of the 743 invited PHR-users completed the questionnaire. 78% inpatients and 83% outpatients indicated that usability of the PHR was good. There were no significant association between patient-, clinical-, hospital-, and ICT-related factors and the usability of the PHR. The majority of the patients (57% inpatients and 67% outpatients) classified perceived usefulness of the PHR as good, excellent, or best imaginable. Outpatients who also used the PHR for other drug related purposes reported a higher perceived usefulness (adjusted odds ratio 20.0; 95% confidence interval 2.36-170). Besides that, there was no significant association between patient-, clinical-, hospital-, and ICT-related factors and the perceived usefulness of the PHR. CONCLUSIONS: The majority of the patients indicated that the PHR for medication reconciliation was useful and easy to use, but there is still room for improvement. To improve the intervention, further research should explore patients' barriers and facilitators of using a PHR for medication reconciliation.


Asunto(s)
Registros de Salud Personal , Conciliación de Medicamentos , Estudios Transversales , Humanos , Sistemas de Registros Médicos Computarizados , Atención Dirigida al Paciente
9.
J Med Internet Res ; 24(4): e35013, 2022 04 13.
Artículo en Inglés | MEDLINE | ID: mdl-35416782

RESUMEN

BACKGROUND: The importance of blockchain-based architectures for personal health record (PHR) lies in the fact that they are thought and developed to allow patients to control and at least partly collect their health data. Ideally, these systems should provide the full control of such data to the respective owner. In spite of this importance, most of the works focus more on describing how blockchain models can be used in a PHR scenario rather than whether these models are in fact feasible and robust enough to support a large number of users. OBJECTIVE: To achieve a consistent, reproducible, and comparable PHR system, we build a novel ledger-oriented architecture out of a permissioned distributed network, providing patients with a manner to securely collect, store, share, and manage their health data. We also emphasize the importance of suitable ledgers and smart contracts to operate the blockchain network as well as discuss the necessity of standardizing evaluation metrics to compare related (net)works. METHODS: We adopted the Hyperledger Fabric platform to implement our blockchain-based architecture design and the Hyperledger Caliper framework to provide a detailed assessment of our system: first, under workload, ranging from 100 to 2500 simultaneous record submissions, and second, increasing the network size from 3 to 13 peers. In both experiments, we used throughput and average latency as the primary metrics. We also created a health database, a cryptographic unit, and a server to complement the blockchain network. RESULTS: With a 3-peer network, smart contracts that write on the ledger have throughputs, measured in transactions per second (tps) in an order of magnitude close to 102 tps, while those contracts that only read have rates close to 103 tps. Smart contracts that write also have latencies, measured in seconds, in an order of magnitude close to 101 seconds, while that only read have delays close to 100 seconds. In particular, smart contracts that retrieve, list, and view history have throughputs varying, respectively, from 1100 tps to 1300 tps, 650 tps to 750 tps, and 850 tps to 950 tps, impacting the overall system response if they are equally requested under the same workload. Varying the network size and applying an equal fixed load, in turn, writing throughputs go from 102 tps to 101 tps and latencies go from 101 seconds to 102 seconds, while reading ones maintain similar values. CONCLUSIONS: To the best of our knowledge, we are the first to evaluate, using Hyperledger Caliper, the performance of a PHR blockchain architecture and the first to evaluate each smart contract separately. Nevertheless, blockchain systems achieve performances far below what the traditional distributed databases achieve, indicating that the assessment of blockchain solutions for PHR is a major concern to be addressed before putting them into a real production.


Asunto(s)
Cadena de Bloques , Registros de Salud Personal , Manejo de Datos , Atención a la Salud , Humanos
10.
J Med Internet Res ; 24(1): e29367, 2022 01 25.
Artículo en Inglés | MEDLINE | ID: mdl-35076397

RESUMEN

BACKGROUND: Mobile applications offer a new approach to personal health records, which are internet-based tools for patients to consolidate and manage their health information. The University of Pennsylvania Health System (UPHS) was one of the first health systems to participate in Apple Health Records (AHR), a prominent example of this new generation of personal health records. OBJECTIVE: This study aimed to characterize early adoption of AHR among UPHS patients and understand user perspectives. METHODS: An email-based survey with fixed answer, Likert scale, and open-ended questions was administered to all UPHS patients using AHR in the first 10 months of enrollment. Survey data linked to the UPHS electronic health record system were used to analyze responses. Multivariable logistic regression modeled the association of patient characteristics with user ratings. Content analysis was used to analyze open-ended questions. RESULTS: At the time of the survey, a total of 1458 patients had used AHR at least once. Mean age of AHR users was 47.5 years, 66.3% (967/1458) were male, 70.9% (1033/1458) were white, and 80.8% (1178/1458) had private insurance. Response rate was 26.8% (391/1458); 46.3% (180/389) were very satisfied with AHR, and 67.7% (264/390) described it as very easy to use. The most commonly utilized features were lab results (324/391, 82.9%), clinical vitals (264/391, 67.5%), and medications (253/391, 64.7%). No patient characteristics were associated with reporting high satisfaction or ease of use. The most common reason for using AHR was convenience/ease of use, and 58.2% (160/275) of users reported allowing no other apps to access their health information, citing privacy as one consideration. CONCLUSIONS: Early adopters of AHR were demographically white, male, and privately insured. Convenience was an important facilitator, and users were selective in which apps they allowed to access their health information.


Asunto(s)
Registros de Salud Personal , Malus , Centros Médicos Académicos , Estudios Transversales , Registros Electrónicos de Salud , Humanos , Masculino , Sistemas de Registros Médicos Computarizados , Persona de Mediana Edad
11.
J Med Internet Res ; 24(12): e41972, 2022 12 27.
Artículo en Inglés | MEDLINE | ID: mdl-36574284

RESUMEN

BACKGROUND: Health care delivery and patient satisfaction are improved when patients engage with their medical information through patient portals. Despite their wide availability and multiple functionalities, patient portals and their functionalities are still underused. OBJECTIVE: We seek to understand factors that lead to patient engagement through multiple portal functionalities. We provide recommendations that could lead to higher patients' usage of their portals. METHODS: Using data from the Health Information National Trends Survey 5, Cycle 3 (N=2093), we performed descriptive statistics and used a chi-square test to analyze the association between the demographic variables and the use of mobile health apps for accessing medical records. We further fitted a generalized linear model to examine the association between access type and the use of portal functionalities. We further examined the moderation effects of age groups on the impact of access type on portal usage. RESULTS: Our results show that accessing personal health records using a mobile health app is positively associated with greater patient usage of access capabilities (ß=.52; P<.001), patient-provider interaction capabilities (ß=.24, P=.006), and patient-personal health information interaction capabilities (ß=.23, P=.009). Patients are more likely to interact with their records and their providers when accessing their electronic medical records using a mobile health app. The impacts of mobile health app usage fade with age for tasks consisting of viewing, downloading, and transmitting medical results to a third party (ß=-.43, P=.005), but not for those involving patient-provider interaction (ß=.05, P=.76) or patient-personal health information interaction (ß=-.15, P=.19). CONCLUSIONS: These findings provide insights on how to increase engagement with diverse portal functionalities for different age groups and thus improve health care delivery and patient satisfaction.


Asunto(s)
Registros de Salud Personal , Portales del Paciente , Humanos , Registros Electrónicos de Salud , Participación del Paciente , Satisfacción del Paciente
12.
BMC Med Inform Decis Mak ; 22(1): 182, 2022 07 15.
Artículo en Inglés | MEDLINE | ID: mdl-35840936

RESUMEN

BACKGROUND: The application of telemedicine and electronic health (eHealth) technology has grown in importance during the COVID-19 pandemic, and a new approach in personal data management and processing MyData, has emerged. Data portability and informational self-determination are fundamental concepts of MyData. This study analysed the factors that influence acceptance of the MyData platform, which, reflects the right to self-determine personal data. METHODS: The study involved participants having experience using the MyData platform, and the key factors of the unified theory of acceptance and use of technology were used in the research model (performance expectancy, effort expectancy, social influence, facilitation condition and behavioural intention to use). The questionnaire comprided 27 items, and system usage log data were used to confirm that behavioural intention to use affected actual use behaviour through structural equation modeling. RESULTS: In total, 1153 participants completed the survey. The goodness of fit in the structural equation model indices indicates that the data fit the research model well. Performance expectancy, social influence, and facilitating conditions had direct effects on behavioural intention to use. We used system usage log data to confirm that behavioural intention to use positively affected actual use behaviour. The impact of the main factors in the unified theory of acceptance and use of technology was not moderated by age or gender, except for performance expectancy. CONCLUSIONS: This study is the first to examine the factors influencing the use of the MyData platform based on the personal health record data sharing system in Korea. In addition, the study confirmed the use behaviour of the MyData platform utilising the system's actual usage log for each function and analysing the effect of the intention of use on actual use. Our study serves as a significant foundation for the acceptance of data portability and sharing concepts. It also lays the foundation for expanding the data economy and ecosystem in the pandemic era.


Asunto(s)
COVID-19 , Registros de Salud Personal , Ecosistema , Humanos , Difusión de la Información , Intención , Pandemias , Encuestas y Cuestionarios
13.
Saudi Pharm J ; 30(3): 185-194, 2022 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-35498224

RESUMEN

Introduction: As the American's Federal Health Insurance Portability and Accountability Act (HIPAA) stated that patients should be allowed to review their medical records, and as information technology is ever more widely used by healthcare professionals and patients, providing patients with online access to their own medical records through a patient portal is becoming increasingly popular. Previous research has been done regarding the impact on the quality and safety of patients' care, rather than explicitly on medication safety, when providing those patients with access to their electronic health records (EHRs). Aim: This narrative review aims to summarise the results from previous studies on the impact on medication management safety concepts of adult patients accessing information contained in their own EHRs. Result: A total of 24 studies were included in this review. The most two commonly studied measures of safety in medication management were: (a) medication adherence and (b) patient-reported experience. Other measures, such as: discrepancies, medication errors, appropriateness and Adverse Drug Events (ADEs) were the least studied. Conclusion: The results suggest that providing patients with access to their EHRs can improve medication management safety. Patients pointed out improvements to the safety of their medications and perceived stronger medication control. The data from these studies lay the foundation for future research.

14.
Am J Med Genet C Semin Med Genet ; 187(1): 7-13, 2021 03.
Artículo en Inglés | MEDLINE | ID: mdl-33277802

RESUMEN

Technology has changed the way we approach medical care: health data is constantly being generated, medical discoveries are progressing more rapidly, and individuals are more connected across the world than ever before. Backpack Health is a global personal health record platform that harnesses the power of technology to connect users to their primary health data sources, the medical community, and researchers. By syncing with existing patient portals, health data can be stored on the Backpack Health platform and easily accessed and controlled by users in one connected interface. Individuals manage and collate their current and past conditions, genetic test results, symptoms, medications, procedures, labs, and other health data. Users are empowered to disseminate their information to clinicians, researchers, foundations, and pharmaceutical and biotechnology companies they connect with through the Backpack Health application. Here, we describe how two rare disease advocacy groups, The Marfan Foundation and Project Alive, utilize Backpack Health to connect with their target populations. Through secure transfer of pseudonymized data, groups can query their members to improve understanding of clinical features and to facilitate meaningful research. Responses to the groups' surveys show strong member engagement with high completion rates and increases in new Backpack Health users when surveys are deployed. Data from these surveys have been published and used to better inform clinical outcomes for treatment trials. By connecting users directly to the foundations, clinicians, researchers, and industry partners working on their condition, Backpack Health is instrumental in fast-tracking medical discoveries and treatment for rare diseases.


Asunto(s)
Difusión de la Información , Enfermedades Raras , Humanos , Encuestas y Cuestionarios
15.
Int J Qual Health Care ; 33(3)2021 Sep 12.
Artículo en Inglés | MEDLINE | ID: mdl-34410422

RESUMEN

BACKGROUND: Patient participation is increasingly recognized as a key component in the redesign of healthcare processes and is advocated as a means to improve patient safety. OBJECTIVE: To explore the usage of participatory engagement in patient-created and co-designed medical records for emergency admission to the hospital. METHODS: design: prospective iterative development and feasibility testing of personal health records; setting: an acute medical unit in a university-affiliated hospital; participants: patients admitted to hospital for medical emergencies; interventions: we used a design-led development of personal health record prototypes and feasibility testing of records completed by patients during the process of emergency admission. 'Express-check-in' records contained items of social history, screening questions for sepsis and acute kidney injury in addition to the patients' ideas, concerns and expectations; main outcome measures: the outcome metrics focused on feasibility and a selection of quality domains, namely effectiveness of recording relevant history, time efficiency of the documentation process, patient-centredness of resulting records and staff and patient feedback. The incidence of sepsis and acute kidney injury were used as surrogate measures for assessing the safety impact. RESULTS: The medical record prototypes were developed in an iterative fashion and tested with 100 patients, in which 39 patients were 70 or older and 25 patients were classified as clinically frail. Ninety-six per cent of the data items were completed by patients with no or minimal help from healthcare professionals. The completeness of these patient records was superior to that of the corresponding medical records in that they contained deeply held beliefs and fears, whereas concerns and expectations recorded by patients were only mirrored in a small proportion of the formal clinical records. The sepsis self-screening tool identified 68% of patients requiring treatment with antibiotics. The intervention was feasible, independent of the level of formal education and effective in frail and elderly patients with support from family and staff. The prototyped records were well received and felt to be practical by patients and staff. The staff indicated that reading the patients' documentation led to significant changes in their clinical management. CONCLUSIONS: Medical record accessibility to patients during hospital care contributes to the co-management of personal healthcare and might add critical information over and above the records compiled by healthcare professionals.


Asunto(s)
Urgencias Médicas , Registros de Salud Personal , Anciano , Estudios de Factibilidad , Hospitales , Humanos , Estudios Prospectivos
16.
Tohoku J Exp Med ; 255(3): 183-194, 2021 11.
Artículo en Inglés | MEDLINE | ID: mdl-34853210

RESUMEN

Disaster response procedures have been developed and improved following the Great East Japan Earthquake. Innovative services have also been created through digital transformation, including an acceleration and deepening of artificial intelligence technology. Things that were once technically impossible are now possible. These innovative technologies will spread across various fields, and disaster response will not be an exception. The Ministry of Health, Labour and Welfare is promoting the use of personal health records in a way that effectively supports the management of treatments by using data from wearable devices and specific applications. During the COVID-19 pandemic, the trade-off between protecting personal information and enabling social benefits, such as in the use of digital tracking, and infodemics, including misinformation, have become new social challenges. Reviewing past disaster preparedness and the services and value provided by digital transformation indicates what new disaster preparedness should be. Digital transformation does not require literacy (ability to collect, analyze, and use information) but competence (beneficial behavioral traits derived from experience). Understanding behavior through data and enabling rational behavior are crucial. By increasing human productivity, we can save time and improve self- and mutual-help in times of disaster. Medical information and digital services must be properly used in normal times. A society that uses such services will be more disaster resilient.


Asunto(s)
Inteligencia Artificial , Planificación en Desastres , Informática Médica , COVID-19 , Comunicación , Empoderamiento , Humanos , Infodemia , Japón , Pandemias
17.
J Med Internet Res ; 23(7): e26236, 2021 07 21.
Artículo en Inglés | MEDLINE | ID: mdl-34287210

RESUMEN

BACKGROUND: Functionalities of personal health record (PHR) are evolving, and continued discussions about PHR functionalities need to be performed to keep it up-to-date. Technological issues such as nonfunctional requirements should also be discussed in the implementation of PHR. OBJECTIVE: This study systematically reviewed the main functionalities and issues in implementing the PHR. METHODS: This systematic review was conducted using Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guidelines. The search is performed using the online databases Scopus, ScienceDirect, IEEE, MEDLINE, CINAHL, and PubMed for English journal articles and conference proceedings published between 2015 and 2020. RESULTS: A total of 105 articles were selected in the review. Seven function categories were identified in this review, which is grouped into basic and advanced functions. Health records and administrative records were grouped into basic functions. Medication management, communication, appointment management, education, and self-health monitoring were grouped into advanced functions. The issues found in this study include interoperability, security and privacy, usability, data quality, and personalization. CONCLUSIONS: In addition to PHR basic and advanced functions, other supporting functionalities may also need to be developed based on the issues identified in this study. This paper provides an integrated PHR architectural model that describes the functional requirements and data sources of PHRs.


Asunto(s)
Registros de Salud Personal , Humanos , Almacenamiento y Recuperación de la Información , Sistemas de Registros Médicos Computarizados , Tecnología
18.
J Med Internet Res ; 23(4): e27069, 2021 04 21.
Artículo en Inglés | MEDLINE | ID: mdl-33819168

RESUMEN

BACKGROUND: The successful completion of medical practices often relies on information collection and analysis. Government agencies and medical institutions have encouraged people to use medical information technology (MIT) to manage their conditions and promote personal health. In 2014, Taiwan established the first electronic personal health record (PHR) platform, My Health Bank (MHB), which allows people to access and manage their PHRs at any time. In the face of the COVID-19 pandemic in 2020, Taiwan has used MIT to effectively prevent the spread of COVID-19 and undertaken various prevention measures before the onset of the outbreak. Using MHB to purchase masks in an efficient and orderly way and thoroughly implementing personal protection efforts is highly important to contain disease spread. OBJECTIVE: This study aims to understand people's intention to use the electronic PHR platform MHB and to investigate the factors affecting their intention to use this platform. METHODS: From March 31 to April 9, 2014, in a promotion via email and Facebook, participants were asked to fill out a structured questionnaire after watching an introductory video about MHB on YouTube. The questionnaire included seven dimensions: perceived usefulness, perceived ease of use, health literacy, privacy and security, computer self-efficacy, attitude toward use, and behavioral intention to use. Each question was measured on a 5-point Likert scale ranging from "strongly disagree" (1 point) to "strongly agree" (5 points). Descriptive statistics and structural equation analysis were performed using SPSS 21 and AMOS 21 software. RESULTS: A total of 350 valid questionnaire responses were collected (female: 219/350, 62.6%; age: 21-30 years: 238/350, 68.0%; university-level education: 228/350, 65.1%; occupation as student: 195/350, 56.6%; average monthly income

Asunto(s)
COVID-19/epidemiología , Máscaras , Adulto , COVID-19/prevención & control , COVID-19/transmisión , Estudios Transversales , Transmisión de Enfermedad Infecciosa/prevención & control , Femenino , Humanos , Internet , Masculino , Pandemias , SARS-CoV-2 , Encuestas y Cuestionarios , Taiwán/epidemiología , Tecnología , Adulto Joven
19.
BMC Med Inform Decis Mak ; 21(1): 329, 2021 11 24.
Artículo en Inglés | MEDLINE | ID: mdl-34819050

RESUMEN

BACKGROUND: To improve chronic disease outcomes, self-management is an effective strategy. An electronic personal health record (ePHR) is a promising tool with the potential to support chronic patient's education, counseling, and self-management. Fitting ePHRs within the daily practices of chronic care providers and chronic patients requires user-centered design approaches. We aimed to understand users' needs and requirements in chronic kidney disease (CKD) care to consider in the design of an ePHR to facilitate its implementation, adoption, and use. METHODS: A qualitative study was conducted in a major Iranian nephrology center including inpatient and outpatient settings in 2019. We conducted 28 semi-structured interviews with CKD patients, nurses, and adult nephrologists. To confirm or modify the requirements extracted from the interviews, a focus group was also held. Data were analyzed to extract especially those requirements that can facilitate implementation, adoption, and sustained use based on the PHR adoption model and the unified theory of acceptance and use of technology. RESULTS: Participants requested an ePHR that provides access to up to date patient information, facilitates patient-provider communication, and increases awareness about patient individualized conditions. Participants expected a system that is able to cater to low patient e-health literacy and high provider workload. They requested the ePHR to include purposeful documentation of medical history, diagnostic and therapeutic procedures, tailored educational content, and scheduled care reminders. Messaging function, tailored educational content to individual patients' conditions, and controlled access to information were highly valued in order to facilitate its implementation, adoption, and use. CONCLUSIONS: We focused on the ePHR's content and functionalities in the face of facilitators and/or barriers envisioned for its adoption in nephrology care. Designers and implementers should value CKD patients' needs and requirements for self-management such as providing personalized education and counseling (on the basis of their condition and risk factors), health literacy, and disease progression levels. The socio-technical aspects of care also need further attention to facilitate ePHR's adoption.


Asunto(s)
Registros de Salud Personal , Insuficiencia Renal Crónica , Adulto , Electrónica , Humanos , Irán , Participación del Paciente , Insuficiencia Renal Crónica/terapia , Diseño Centrado en el Usuario
20.
J Clean Prod ; 282: 124262, 2021 Feb 01.
Artículo en Inglés | MEDLINE | ID: mdl-32982077

RESUMEN

A personal health record is an eHealth technology in which users can observe their progress over time for a given condition. A research gap was identified in the literature concerning the study of the amount of energy that these systems need for their operation, and the energy efficiency that may be attained depending on their design. After the selection of five representative personal health records, a total of 20 tasks commonly done, and based on previous work, were performed with regard to two proposed scenarios, namely patient use and health personnel usage. The power consumption of the main components of a host machine was measured during the performance of the proposed duties. To that end, a hardware tool called the Energy Efficiency Tester was employed. The data collected were analyzed statistically, and significant differences were found in the respective consumption of the display (χ2 (4) = 23.782, p = 0.000), the processor (χ2 (4) = 29.018, p = 0.000) and the whole PC (χ2 (4) = 28.582, p = 0.000). For all of these components, NoMoreClipBoard was the personal health record that required the least energy (57.699 W for the display, 3.162 W for the processor and 181.113 W for the whole PC). A total of two strong correlations were found in the energy consumption between the hard disk and the graphics card (r = 0.791, p < 0.001), and the processor and the PC (r = 0.950, p < 0.001). Some features generated special amounts of power consumption, such as the news wall found on PatientsLikeMe, or the use of load icons that had an impact on most PC components. In addition, an in-depth analysis of the user interfaces was performed. A discussion was carried out on the design of the user interfaces, also taking into account recommendations drawn from the literature, checking for their implementation in the personal health records selected. With the aim of promoting sustainability among software developers, a best practice guideline on sustainable software design was proposed. Basic sustainability recommendations were collected for professionals to consider when developing a software system in general, and a personal health record in particular.

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