Electronic Personal Health Record Research Articles

Exploring Electronic Personal Health Record usage in Northern Italy: a cross-sectional study

Abstract Background The Electronic Personal Health Record (EPHR) is a patient-centered tool that enables citizens to manage their health information. The EPHR has been implemented worldwide, including in Italy, and holds immense potential, but it has shown a generalized underutilisation. Therefore, this paper aims to identify its fulfillment and the reasons behind its poor use, potentially uncovering the key to unlocking its benefits. Methods A survey was distributed on social media and in the waiting rooms of vaccination facilities in a Region of Italy. Multivariable regression models were conducted to detect a connection between the general population’s usage of the EPHR and specific independent variables. Results Of the 1634 respondents, 710 activated the EPHR, especially women, Italians, highly educated, unemployed, with good health but affected with chronic diseases. Amongst those who activated the EPHR, the multivariate analysis showed that the number of accesses to the platform was significantly associated with lower age (adjusted Odds Ratio (adjOR) 0.96 p = 0.015), higher level of education (adjOR 2.17 p = 0.029), unemployment (adjOR 5.61 p = 0.008) and considering the information on the EPHR complete (adjOR 3.83 p = 0.001). As age increases, the perceived ease of access to the EPHR decreases (adjOR=0.98 p = 0.049). Having a higher level of education (adjOR=0.41 p = 0.042), autonomy in reading health materials (adjOR=0.32 p = 0.043), and less self-confidence in filling out medical forms (adjOR=0.61 p = 0.033) were linked to a decrease in perceived ease of access. Conclusions The study showed that the EPHR is more utilised by specific categories of citizens, especially the young and those with higher education. More efforts should be made to increase access to the EPHR for the whole community by making it more intuitive and user-friendly. The present study provides valuable foundations to foster the implementation of a platform for sharing health data at a European level. Key messages • The Electronic Personal Health Record (EPHR) is underutilised despite its potential; it’s mainly accessed by young and highly educated individuals. • Efforts to increase EPHR usage must focus on improving accessibility and ease of access, as well as enhancing user confidence and autonomy in managing health information.

Lessons from Covid-19 and the potential benefit of the implementation of Axon’s personal electronic health records (PEHR) into aesthetic care, plastic and reconstructive surgery

BackgroundCovid-19 pandemic highlighted the need for implementing Personal Electronic Health Records (PEHR) for patients’ data management. Furthermore, this pandemic underscored the relevance for integrated and interoperable Electronic Health Records (EHR) to support disease surveillance, hospital capacity planning and resource management (Peek N, Sujan M, Scott P (2020) Digital health and care in pandemic times: impact of COVID-19. BMJ Health Care Inf 27(1):e100166. https://doi.org/10.1136/bmjhci-2020-100166). Due to the lack of comprehensive patients’ record in plastic, reconstructive and aesthetic surgery, Axon’s myHealth app offers a break-through patient-centric design allowing patients to be in control of their records and updating them in real-time for their plastic and aesthetic care providers to have a clearer understanding of patients’ history and progress from pre-op to post-op.MethodsThe Axon Dublin survey took place during Covid-19 pandemic in two phases: Phase 1 aimed to assess the feasibility of patients integrating the Axon myHealth application into their clinical visits. Testing occurred in a clinical environment, where patients were encouraged to download and use the Axon system with a health practitioner (HP) present. Phase 2 focused on home testing, evaluating patients’ willingness to manage their health remotely with HP assistance. This phase included self-testing activities such as performing rapid Covid-19 antigen tests, recording medical history, and measuring blood pressure at home.ResultsThe Axon Dublin Study aimed to assess patient engagement, clinical impact, and cost-effectiveness of the Axon myHealth application. Over 85% of patients showed interest in owning a Personal Electronic Health Record. Notably, 36% continuously monitored chronic conditions. Clinical decisions, informed by patient data, saw 61.9% compliance. Noteworthy, 23% of hypertensive participants required immediate medication changes. Patient self-capture of data reduced consultation time. Public health implications were significant, with 39% vaccinated and 31% reporting complications. High user satisfaction (97%) demonstrated the app’s effectiveness in infection control and chronic care.ConclusionsOffering patients the ability to update and control their data is a growing interest, with a clear need in plastic and aesthetic surgery to have a better understanding of a patient’s medical past and progress throughout the surgical process and period. This platform, which is time and cost efficient, can only facilitate personalised care and improve outcomes while maintaining patient’s confidentiality.Level of evidenceNot gradable.

Knowledge, Attitudes, and Practices about Electronic Personal Health Records: A Cross-Sectional Study in a Region of Northern Italy

The Electronic Personal Health Record (EPHR) provides an innovative service for citizens and professionals to manage health data, promoting patient-centred care. It enhances communication between patients and physicians and improves accessibility to documents for remote medical information management. The study aims to assess the prevalence of awareness and acceptance of the EPHR in northern Italy and define determinants and barriers to its implementation. In 2022, a region-wide cross-sectional study was carried out through a paper-based and online survey shared among adult citizens. Univariable and multivariable regression models analysed the association between the outcome variables (knowledge and attitudes toward the EPHR) and selected independent variables. Overall, 1634 people were surveyed, and two-thirds were aware of the EPHR. Among those unaware of the EPHR, a high prevalence of specific socio-demographic groups, such as foreign-born individuals and those with lower educational levels, was highlighted. Multivariable regression models showed a positive association between being aware of the EPHR and educational level, health literacy, and perceived poor health status, whereas age was negatively associated. A higher knowledge of the EPHR was associated with a higher attitude towards the EPHR. The current analysis confirms a lack of awareness regarding the existence of the EPHR, especially among certain disadvantaged demographic groups. This should serve as a driving force for a powerful campaign tailored to specific categories of citizens for enhancing knowledge and usage of the EPHR. Involving professionals in promoting this tool is crucial for helping patients and managing health data.

Healthcare 5.0: A secure and distributed network for system informatics in medical surgery

IntroductionHealth records serve not only as a database of a patient's health history and treatment process but also as a crucial tool for doctors to diagnose and treat patients. However, the storage and sharing of these records are sensitive issues as they involve maintaining patient privacy and ensuring data transparency, security, and interoperability between different parties. Challenges to achieving these goals in the current surgical process can impact the allocation of medical resources and surgical outcomes. MethodsThis article proposes a healthcare 5.0 framework for medical surgery that deploys a secure and distributed network using Blockchain to demonstrate transactions between different parties in the orthopedic surgery process. The proposed network uses the Hyperledger Composer platform for deployment, and a patient-doctor-supplier orthopedic surgery network is designed and implemented to enable the safe sharing of medical records. ResultsA benchmarking tool was implemented for analyzing different scenarios of applying blockchain technology to orthopedic surgery. The application of blockchain technology to orthopedic surgery presents a promising solution for data sharing and supply chain management in the field. The integration of blockchain with cloud storage and hybrid encryption ensures secure and efficient storage of Electronic Health Record (EHR) and Personal Health Record (PHR) data. By leveraging the tamper-proof nature of blockchain and addressing concerns regarding centralized data storage, this scenario demonstrates enhanced security, improved access efficiency, and privacy protection in medical data sharing. ConclusionsThe article demonstrates the feasibility of using an IoT-based blockchain network in orthopedic surgery, which can reduce medical errors and improve data interoperability among different parties. This unique application of blockchain enables secure sharing of medical records, ensuring transparency, security, and interoperability. The network design may also be applicable to other surgeries and medical applications in the future.

Prevalence of the hematopoietic rare genetic diseases in Türkiye: A retrospective study

BackgroundRare genetic diseases are an important global public health problem. At present there are defined approximately 8120 genetic diseases in 15,465 epidemiological datasets and 70% of them start in childhood. Hematopoiesis is the production of all cellular components of blood and continues throughout life. ObjectiveThis study aims to present prevalence of hematopoietic rare genetic diseases recorden in Turkey. MethodsThe population of study consist of 84.680.273 people who received healthcare from the Turkish National Health Service (49.9% female, 50.1% male). TNHS collects and records electronic data which relates with illness or health information of Turkish population since 2018. All healthcare facilities utilize the Personal Electronic Health Record System (PHR), aligning with standards outlined in the Turkish National Health Data Dictionary and the Health Coding Reference Server (HCRS) established by the Ministry of Health in 2007. The data dictionary comprises essential packages such as patient application and examination records. ResultsDiagnosed female population (53.04%) were higher than male (46.96%). Data shows that most of the people with rare genetic diseases were diagnosed in Marmara Region. The overall prevalence of Hematopoietic Rare Genetic Diseases higher in the years of 2021 and 2022. ConclusionThe prevalence increased gradually from 2018 to 2022. The consanguinity marriage seems to be the main problem which resulted higher rate of rare genetic diseases in Türkiye.

Predicting electronic personal health record (e-PHR) acceptance: evidence from emerging market

PurposeWith the function to store individual’s data input, personal health record (PHR) enhanced the accessibility to personal health information. This study aims to assess the factors that impact the intention of Malaysian internet users to use PHR and create a modified technology acceptance model (TAM) for eHealth.Design/methodology/approachMultivariate statistical analysis was performed on a total of 216 responses using the partial least square technique based on the cross-sectional survey among Malaysian internet users.FindingsBehavioral intention was positively associated to PHR. Subjective norm significantly influenced both attitude and intention to use, whereas trust and perceived usefulness significantly influenced attitude. There was no significant positive impact in the relationships between compatibility and perceived ease of use and intention to use; nevertheless, they positively influenced perceived usefulness. Attitude exhibited mediating influence between trust, perceived usefulness and subjective norm and intention to use. Nonetheless, perceived risk did not affect behavioral intention. Thus, PHR acceptance was well-justified by the modified TAM in evaluating eHealth acceptance.Practical implicationsThe eHealth vendors can enhance their marketing and development strategies on related products.Originality/valueLiteratures and empirical evidence on eHealth are still scarce, especially in emerging markets. The role of attitude may not be well-researched in health-care context, therefore was included in this study’s modified TAM. Critical determinants, namely, trust and risk, were added to the model.

Outcomes of End-User Testing of a Care Coordination Mobile App With Families of Children With Special Health Care Needs: Simulation Study.

Care for children with special health care needs relies on a network of providers who work to address the medical, behavioral, developmental, educational, social, and economic needs of the child and their family. Family-directed, manually created visual depictions of care team composition (ie, care mapping) and detailed note-taking curated by caregivers (eg, care binders) have been shown to enhance care coordination for families of these children, but they are difficult to implement in clinical settings owing to a lack of integration with electronic health records and limited visibility of family-generated insights for care providers. Caremap is an electronic health record-integrated digital personal health record mobile app designed to integrate the benefits of care mapping and care binders. Currently, there is sparse literature describing end-user participation in the co-design of digital health tools. In this paper, we describe a project that evaluated the usability and proof of concept of the Caremap app through end-user simulation. This study aimed to conduct proof-of-concept testing of the Caremap app to coordinate care for children with special health care needs and explore early end-user engagement in simulation testing. The specific aims included engaging end users in app co-design via app simulation, evaluating the usability of the app using validated measures, and exploring user perspectives on how to make further improvements to the app. Caregivers of children with special health care needs were recruited to participate in a simulation exercise using Caremap to coordinate care for a simulated case of a child with complex medical and behavioral needs. Participants completed a postsimulation questionnaire adapted from 2 validated surveys: the Pediatric Integrated Care Survey (PICS) and the user version of the Mobile Application Rating Scale (uMARS). A key informant interview was also conducted with a liaison to Spanish-speaking families regarding app accessibility for non-English-speaking users. A Caremap simulation was successfully developed in partnership with families of children with special health care needs. Overall, 38 families recruited from 19 different US states participated in the simulation exercise and completed the survey. The average rating for the survey adapted from the PICS was 4.1 (SD 0.82) out of 5, and the average rating for the adapted uMARS survey was 4 (SD 0.83) out of 5. The highest-rated app feature was the ability to track progress toward short-term, patient- and family-defined care goals. Internet-based simulation successfully facilitated end-user engagement and feedback for a digital health care coordination app for families of children with special health care needs. The families who completed simulation with Caremap rated it highly across several domains related to care coordination. The simulation study results elucidated key areas for improvement that translated into actionable next steps in app development.

"Seeing the light in the shade of it": primary caregiver and youth perspectives on using an inpatient portal for pain care during hospitalization.

Studies from multiple countries report that most hospitalized children, especially the youngest and sickest, experience pain that is often severe yet inadequately treated. Evidence suggests this can lead to immediate and lifelong consequences affecting children, families, and communities. Partnership and shared decision-making by children, families, and clinicians is the ideal pediatric healthcare model and can improve care quality and safety, including pain care. A growing evidence base demonstrates that inpatient portals (electronic personal health record applications linked to hospital electronic medical or health records) can improve child and family engagement, outcomes, and satisfaction during hospitalization. This study examined the perspectives of caregivers of hospitalized children and of hospitalized youth about using an inpatient portal to support their engagement in pain care while in hospital. A qualitative descriptive study design was used and 20 participants (15 caregivers and 5 youth) with various painful conditions in one pediatric hospital participated in semistructured interviews. The authors applied a reflexive content analysis to the data and developed 3 broad categories: (1) connecting and sharing knowledge about pain, (2) user-centred designs, and (3) preserving roles. These findings outlined caregiver and youth recommendations for portal configurations that deeply engage and empower children and families in pain care through multidirectional knowledge sharing, supporting caregiver and clinicians' roles without burdening, or replacing human interaction implicit in family-centered pain care. Further research should measure the impact of portals on pain-related outcomes and explore the perspectives of clinicians.

The minimum data set of electronic personal health records for Alzheimer's disease using design science methodology

ObjectiveLong-term management of healthcare information for chronic patients such as Alzheimer's is complex and tedious. An electronic Personal Health Record (ePHR) can help patients by maintaining a history of healthcare data from various centers. The purposes of this research were to develop a minimum data set (MDS) to design an ePHR for caregivers of patients with Alzheimer's disease (AD) using design science methodology and to identify the necessary measures for a smooth ePHR implementation in Iran. MethodsThis study was performed in Kerman from February 2020 to October 2021. To inform caregivers about ePHRs, information sessions were held and a pictorial method was used. Then, 20 semi-structured interviews were conducted with seven physicians and 13 caregivers involved in the care of Alzheimer's patients. Using thematic analysis based on the Information System Research (ISR) framework, the data were encoded and analyzed. ResultsThe MDS of an ePHR for AD contained 178 data elements, categorized into six main sections. The participants considered the use of an ePHR essential to achieve quality care. Using an ePHR can serve as the main method of collecting accurate histories of each Alzheimer's patient in different disease stages and monitoring their behavioral changes. Data confidentiality and security were considered as one of the main measures for AD ePHR implementation. ConclusionThis study identified an AD-specific MDS, as the first major step in launching ePHRs for Alzheimer's patients in the future. The MDS was developed based on the requirements of neurologists and caregivers.

A qualitative study of factors influencing ePHR adoption by caregivers and care providers of Alzheimer's patients: An extension of the unified theory of acceptance and use of technology model

AbstractBackground and AimsAs the nowadays provision of many healthcare services relies on technology, a better understanding of the factors contributing to the acceptance and use of technology in health care is essential. For Alzheimer's patients, an electronic personal health record (ePHR) is one such technology. Stakeholders should understand the factors affecting the adoption of this technology for its smooth implementation, adoption, and sustainable use. So far, these factors have not fully been understood for Alzheimer's disease (AD)‐specific ePHR. Therefore, the present study aimed to understand these factors in ePHR adoption based on the perceptions and views of care providers and caregivers involved in AD care.MethodsThis qualitative study was conducted from February 2020 to August 2021 in Kerman, Iran. Seven neurologists and 13 caregivers involved in AD care were interviewed using semi‐structured and in‐depth interviews. All interviews were conducted through phone contacts amid Covid‐19 imposed restrictions, recorded, and transcribed verbatim. The transcripts were coded using thematic analysis based on the unified theory of acceptance and use of technology (UTAUT) model. ATLAS.ti8 was used for data analysis.ResultsThe factors affecting ePHR adoption in our study comprised subthemes under the five main themes of performance expectancy, effort expectancy, social influence, facilitating conditions of the UTAUT model, and the participants' sociodemographic factors. From the 37 facilitating factors and 13 barriers identified for ePHR adoption, in general, the participants had positive attitudes toward the ease of use of this system. The stated obstacles were dependent on the participants' sociodemographic factors (such as age and level of education) and social influence (including concern about confidentiality and privacy). In general, the participants considered ePHRs efficient and useful in increasing neurologists' information about their patients and managing their symptoms in order to provide better and timely treatment.ConclusionThe present study gives a comprehensive insight into the acceptance of ePHR for AD in a developing setting. The results of this study can be utilized for similar healthcare settings with regard to technical, legal, or cultural characteristics. To develop a useful and user‐friendly system, ePHR developers should involve users in the design process to take into account the functions and features that match their skills, requirements, and preferences.

Continuing the quality improvement of an electronic personal health record and interactive website for people with diabetes in Scotland (My Diabetes My Way).

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. 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. 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. 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.

Healthcare professionals' knowledge, attitude and its associated factors toward electronic personal health record system in a resource-limited setting: A cross-sectional study.

Electronic personal health record (e-PHR) system enables individuals to access their health information and manage it themselves. It helps patient engagement management of health information that is accessed and shared with their healthcare providers using the platform. This improves individual healthcare through the exchange of health information between patients and healthcare providers. However, less is known about e-PHRs among healthcare professionals. Therefore, this study aimed to assess Health professionals' Knowledge and attitude and its associated factors toward e-PHR at the teaching hospital in northwest Ethiopia. An institution-based cross-sectional study design was used to determine healthcare professionals' knowledge and attitude and their associated factors toward e-PHR systems in teaching hospitals of Amhara regional state, Ethiopia, from 20 July to 20 August 2022. Pretested structured self-administered questionnaires were used to collect the data. Descriptive statistic was computed based on sociodemographic and other variables presented in the form of table graphs and texts. Bivariable and multivariable logistic analyses were performed with an adjusted odds ratio (AOR) and 95% CI to identify predictor variables. Of the total study participants, 57% were males and nearly half of the respondents had a bachelor's degree. Out of 402 participants, ~65.7% [61-70%] and 55.5% [50-60%] had good knowledge and favorable attitude toward e-PHR systems, respectively. Having a social media account 4.3 [AOR = 4.3, 95% CI (2.3-7.9)], having a smartphone 4.4 [AOR = 4.4, 95% CI (2.2-8.6)], digital literacy 8.8 [(AOR = 8.8, 95% CI (4.6-15.9)], being male 2.7 [AOR = 2.7, 95% CI (1.4-5.0)], and perceived usefulness 4.5 [(AOR = 4.5, 95% CI (2.5-8.5)] were positively associated with knowledge toward e-PHR systems. Similarly, having a personal computer 1.9 [AOR = 1.9, 95% CI (1.1-3.5)], computer training 3.9 [AOR = 3.9, 95% CI (1.8-8.3)], computer skill 19.8 [AOR = 19.8, 95% CI (10.7-36.9)], and Internet access 6.0 [AOR = 6.0, 95% CI (3.0-12.0)] were predictors for attitude toward e-PHR systems. The findings from the study showed that healthcare professionals have good knowledge and a favorable attitude toward e-PHRs. Providing comprehensive basic computer training to improve healthcare professionals' expectation on the usefulness of e-PHR systems has a paramount contribution to the advancement of their knowledge and attitude toward successfully implementing e-PHRs.

Predicting healthcare professionals’ acceptance towards electronic personal health record systems in a resource-limited setting: using modified technology acceptance model

ObjectivesPersonal health record systems allow users to manage their health information in a confidential manner. However, there is little evidence about healthcare providers’ intentions to use such technologies in resource-limited...

Patterns in the Use of Heart Failure Telemonitoring: Post Hoc Analysis of the e-Vita Heart Failure Trial.

Research on the use of home telemonitoring data and adherence to it can provide new insights into telemonitoring for the daily management of patients with heart failure (HF). We described the use of a telemonitoring platform-including remote patient monitoring of blood pressure, pulse, and weight-and the use of the electronic personal health record. Patient characteristics were assessed in both adherent and nonadherent patients to weight transmissions. We used the data of the e-Vita HF study, a 3-arm parallel randomized trial performed in stable patients with HF managed in outpatient clinics in the Netherlands. In this study, data were analyzed from the participants in the intervention arm (ie, e-Vita HF platform). Adherence to weight transmissions was defined as transmitting weight ≥3 times per week for at least 42 weeks during a year. Data from 150 patients (mean age 67, SD 11 years; n=37, 25% female; n=123, 82% self-assessed New York Heart Association class I-II) were analyzed. One-year adherence to weight transmissions was 74% (n=111). Patients adherent to weight transmissions were less often hospitalized for HF in the 6 months before enrollment in the study compared to those who were nonadherent (n=9, 8% vs n=9, 23%; P=.02). The percentage of patients visiting the personal health record dropped steadily over time (n=140, 93% vs n=59, 39% at one year). With univariable analyses, there was no significant correlation between patient characteristics and adherence to weight transmissions. Adherence to remote patient monitoring was high among stable patients with HF and best for weighing; however, adherence decreased over time. Clinical and demographic variables seem not related to adherence to transmitting weight. ClinicalTrials.gov NCT01755988; https://clinicaltrials.gov/ct2/show/NCT01755988.

An empirical investigation into the preferences of the elderly for user interface design in personal electronic health record systems.

With the continuous advancement of digital technologies, electronic Personal Health Records (ePHR) offer end-users greater control and convenience over their health data. Although ePHR are perceived as innovative tools in medical services that provide patient-centered care and disease prevention, many system interfaces are inclined toward younger users, overlooking investigations pertinent to elderly users. Our objective is to uncover the preferences of the elderly for an ideal ePHR system interface. Relying on a literature review, we identified six interface attributes. Utilizing conjoint analysis, we constructed 16 representative design scenarios based on orthogonal design by combining different attribute levels. We invited 187 elderly participants to evaluate these scenarios. Data analysis was performed using SPSS 26.0. The results indicate that among the ePHR interface design attributes, the elderly prioritize color attributes, followed by the notification method. Designs with contrasting color schemes, skeuomorphic design approaches, and icon-centric menu navigation with segmented layouts, and voice notifications when a message is received, are the most preferred interface design choices. This research elucidates the ideal interface design elements for ePHR as perceived by the elderly, offering valuable references for age-friendly design considerations in ePHR systems. Implementing these insights can aid in promoting mobile health services among the elderly demographic, enhancing their user experience in health management interfaces. This, in turn, fosters the widespread adoption of mobile health service technologies, further advancing the development of a healthy aging society.

Patients Managing Their Medical Data in Personal Electronic Health Records: Scoping Review.

Personal electronic health records (PEHRs) allow patients to view, generate, and manage their personal and medical data that are relevant across illness episodes, such as their medications, allergies, immunizations, and their medical, social, and family health history. Thus, patients can actively participate in the management of their health care by ensuring that their health care providers have an updated and accurate overview of the patients' medical records. However, the uptake of PEHRs remains low, especially in terms of patients entering and managing their personal and medical data in their PEHR. This scoping review aimed to explore the barriers and facilitators that patients face when deciding to review, enter, update, or modify their personal and medical data in their PEHR. This review also explores the extent to which patient-generated and -managed data affect the quality and safety of care, patient engagement, patient satisfaction, and patients' health and health care services. We searched the MEDLINE, Embase, CINAHL, PsycINFO, Cochrane Library, Web of Science, and Google Scholar web-based databases, as well as reference lists of all primary and review articles using a predefined search query. Of the 182 eligible papers, 37 (20%) provided sufficient information about patients' data management activities. The results showed that patients tend to use their PEHRs passively rather than actively. Patients refrain from generating and managing their medical data in a PEHR, especially when these data are complex and sensitive. The reasons for patients' passive data management behavior were related to their concerns about the validity, applicability, and confidentiality of patient-generated data. Our synthesis also showed that patient-generated and -managed health data ensures that the medical record is complete and up to date and is positively associated with patient engagement and patient satisfaction. The findings of this study suggest recommendations for implementing design features within the PEHR and the construal of a dedicated policy to inform both clinical staff and patients about the added value of patient-generated data. Moreover, clinicians should be involved as important ambassadors in informing, reminding, and encouraging patients to manage the data in their PEHR.

1657. Real-life implementation of a machine learning based algorithm for urinary tract infection antibiotic resistance management in the community setting

Abstract Background At outpatient visits, one of the most common reasons for antibiotics administration is Urinary Tract Infection (UTI), where selection of the appropriate empiric antibiotic requires consideration of multiple factors. The aim of this study was to assess the implementation and effectiveness of a machine learning based model for UTI antibiotic resistance, embedded in the physician's medical encounter workflow. Methods A longitudinal, nationwide prospective study, conducted by Maccabi Healthcare Services, a health organization in Israel serving 2.5 million members, with about 120,000 medical encounters with a UTI diagnosis per year. We adopted a machine-learning algorithm to predict antibiotic susceptibility using personal electronic health record data. Then, a designated order set was incorporated within our electronic health record interface, named 'UTI Smart-set' (UTIS). When a UTI diagnosis code is selected by the physician, a pop up screen emerges with the recommended antibiotics. The recommendation is based on the personal predicted susceptibility model developed, followed by the optimal narrow-spectrum antibiotic as recommended by the organizational clinical guidelines. . We analyzed the antibiotic prescriptions that were recommended by UTIS, the actual prescriptions given, and compared them to the culture results and the pathogen antibiotic resistance profile. Results From July 1st 2021 to April 1st 2022, among 73,148 medical encounters with a UTI diagnosis, 34,659 antibiotic prescriptions were provided. In 21,924 (63.2%) encounters the UTIS recommendation was accepted whereas in 12,736 (36.7%) it was declined. Use of the UTIS recommendation resulted in a 31.8% reduction of the measured resistance to antibiotics prescribed to patients, 10.9% (2,224) of cases who followed the UTIS recommendation for antibiotics versus 16.0% (1,879) case who did not. A 47% cumulative improvement in adherence to clinical guidelines was also observed using the tool. Conclusion This unique, point of care, antibiotic stewardship tool, based on a combination of clinical guidelines and personalized medicine, led to a major improvement in the selection of appropriate antibiotics. Disclosures Shirley Shapiro Ben David, MD, pfizer: Grant/Research Support.

Integration of EHR and PHR leveraging cloud services for approving treatments

Historically clinicians have been prescribing treatment to patients based on their visit to the hospital without referring to previous health records of the patients. This is primarily because clinicians do not have access to patient’s medical records. Though, with digital revolution in healthcare domain, patient’s medical history is available via Patient Health Records using Electronic Health Records (EHR) and Personal Health Records (PHR) systems. However, as EHR and PHR are maintained as separate systems in isolated manner, efficient accessibility of these systems is still very limited. To provide a unified view of patient data to the providers and the patients, integrated data resulting from such system not only allow to access past health records of patients, but further leverage PHRs data to provide quality treatment by examining the effect of treatment on patient’s health. Data integration techniques such as ETL and Cloud based technologies can be used to develop a system which provides real-time integration of healthcare data sourced & streamed from various healthcare systems. It will leverage the recommendations of quality treatments to the patients as well as the clinicians from cohesive view of integrated EHR and PHR data.

Decentralized Machine Learning for Intelligent Health-Care Systems on the Computing Continuum

The introduction of electronic personal health records (EHR) enables nationwide information exchange and curation among different health care systems. However, the current EHR systems do not provide transparent means for diagnosis support, medical research or can utilize the omnipresent data produced by the personal medical devices. Besides, the EHR systems are centrally orchestrated, which could potentially lead to a single point of failure. Therefore, in this article, we explore novel approaches for decentralizing machine learning over distributed ledgers to create intelligent EHR systems that can utilize information from personal medical devices for improved knowledge extraction. Consequently, we proposed and evaluated a conceptual EHR to enable anonymous predictive analysis across multiple medical institutions. The evaluation results indicate that the decentralized EHR can be deployed over the computing continuum with reduced machine learning time of up to 60% and consensus latency of below 8 seconds.

Health Indicators as Measures of Individual Health Status and Their Public Perspectives: Cross-sectional Survey Study.

BackgroundDisease status (eg, cancer stage) has been used in routine clinical practice to determine more accurate treatment plans. Health-related indicators, such as mortality, morbidity, and population group life expectancy, have also been used. However, few studies have specifically focused on the comprehensive and objective measures of individual health status.ObjectiveThe aim of this study was to analyze the perspectives of the public toward 29 health indicators obtained from a literature review to provide evidence for further prioritization of the indicators. The difference between health status and disease status should be considered.MethodsThis study used a cross-sectional design. Online surveys were administered through Ohio University, ResearchMatch, and Clemson University, resulting in three samples. Participants aged 18 years or older rated the importance of the 29 health indicators. The rating results were aggregated and analyzed as follows (in each case, the dependent variables were the individual survey responses): (1) to determine the agreement among the three samples regarding the importance of each indicator, where the independent variables (IVs) were the three samples; (2) to examine the mean differences between the retained indicators with agreement across the three samples, where the IVs were the identified indicators; and (3) to rank the groups of indicators into various levels after grouping the indicators with no mean differences, where the IVs were the groups of indicators.ResultsIn total, 1153 valid responses were analyzed. Descriptive statistics revealed that the top five–rated indicators were drug or substance abuse, smoking or tobacco use, alcohol abuse, major depression, and diet and nutrition. Among the 29 health indicators, the three samples agreed upon the importance of 13 indicators. Inferential statistical analysis indicated that some of the 13 indicators held equal importance. Therefore, the 13 indicators were categorized by rank into seven levels: level 1 included blood sugar level and immunization and vaccination; level 2 included LDL cholesterol; level 3 included HDL cholesterol, blood triglycerides, cancer screening detection, and total cholesterol; level 4 included health literacy rate; level 5 included personal care needs and air quality index greater than 100; level 6 included self-rated health status and HIV testing; and level 7 included the supply of dentists. Levels 1 to 3 were rated significantly higher than levels 4 to 7.ConclusionsThis study provides a baseline for prioritizing 29 health indicators, which can be used by electronic health record or personal health record system designers or developers to determine what can be included in the systems to capture an individual’s health status. Currently, self-rated health status is the predominantly used health indicator. Additionally, this study provides a foundation for tracking and measuring preventive health care services more accurately and for developing an individual health status index.