Secure Portal Research Articles

Cyber Security Portal for Effective Management of Servers and Firewalls

The project is an innovative endeavour that tackles the difficulties associated with overseeing heterogeneous servers inside the digital ecosystem. It suggests the creation of a single, centralized interface for the real-time monitoring and management of firewall configurations, security, and server health on diverse platforms. With an all-inclusive platform, administrators may take proactive measures against new threats by integrating firewall settings seamlessly, detecting security risks, streamlining server management, and providing administrators with actionable intelligence.Beyond traditional server management, the proposed system offers a centralized hub for effective, safe, and straightforward administrative server management in multi-server environments. It increases the overall effectiveness of server administration by reducing difficulties with server management and establishing the groundwork for a strong and resilient digital infrastructure that can adjust to changing cyber security threats

Conjoint Analysis of Telemedicine Preferences for Hypertension Management Among Adult Patients.

Background: Telemedicine has been differentially utilized by different demographic groups during COVID-19, exacerbating inequities in health care. We conducted conjoint and latent class analyses to understand factors that shape patient preferences for hypertension management telemedicine appointments. Methods: We surveyed 320 adults, oversampling participants from households that earned <$50K per year (77.2%) and speak a language other than English at home (68.8%). We asked them to choose among 2 hypothetical appointments through 12 conjoint tasks measuring 6 attributes. Individual utilities for attributes were constructed using logit estimation, and latent classes were identified and compared by demographic and clinical characteristics. Results: Respondents preferred in-person visits (0.353, standard error [SE] = 0.039) and video appointments conducted through a secure patient portal (0.002, SE = 0.040). Respondents also preferred seeing a clinician with whom they have an established relationship (0.168, SE = 0.021). We found four latent classes: "in-person" (26.5% of participants) who strongly weighted in-person appointments, "cost conscious" (8.1%) who prioritized the lowest copay ($0 to $10), "expedited" (19.7%) who prioritized getting the earliest appointment possible (same/next day or at least within the next week), and "comprehensive" (45.6%) who had preferences for in-person care and telemedicine appointments through a secure portal, low copayments, and the ability to see a familiar clinician. Conclusions: Appointment preferences for hypertension management can be segmented into four groups that prioritize (1) in-person care, (2) low copayments, (3) expedited care, and (4) balanced preferences for in-person and telemedicine appointments. Evidence is needed to clarify whether aligning appointment offerings with patients' preferences can improve care quality, equity, and efficiency.

Advancing a WEF nexus security index for Alaska: an informed starting point for policy making

ABSTRACT Water, energy, and food (WEF) security has become a key area of research in sustainable development. Prompted by the United Nations’ Sustainable Development Goals, a large body of research highlights the inter-connectedness of WEF systems and the dangers of their siloed treatment. Simultaneously, more attention is being placed on the WEF security of remote populations in the Arctic, especially for areas like Alaska, where WEF insecurities are prevalent, yet obscured by national reporting. This research developed a WEF Nexus Security Index for the state of Alaska that can be used by policy-makers to consider plausible causes for regional inequalities and why some regions of Alaska, and not others are exposed to higher levels of WEF insecurity. Beyond the conceptual value of the index, an on-line Arctic WEF Nexus Security portal was developed that further enables policy-makers and community leaders to track changes in WEF security and monitor the effects stemming from future interventions, be they policy or technological in nature. By bridging nexus thinking and nexus doing, we hope to provide policy-makers with a novel and accessible tool for achieving WEF security in Alaska.

A National audit of the care of patients with acute kidney injury in England and Wales in 2019 and the association with patient outcomes

BackgroundAcute kidney injury (AKI) is a common complication of hospitalisations. This national audit assessed the care received by patients with AKI in hospital Trusts in England and Wales. MethodsTwenty four hospital Trusts across England and Wales took part. Patients with AKI stage2/3 were identified using the UK Renal Registry AKI master patient index. Data was returned through a secure portal with linkage to hospital episode statistic mortality and hospitalisation data. Completion rates of AKI care standards and regional variations in care were established. Results989 AKI episodes were included in the analyses. In-hospital 30-day mortality was 31-33.1% (AKI 2/3). Standard AKI interventions were completed in >80% of episodes. Significant inter-hospital variation remained in attainment of AKI care standards after adjustment for age and sex. Recording of urinalysis (41.9%) and timely imaging (37.2%) were low. Information on discharge summaries relating to medication changes/re-commencement and follow-up blood tests associated with reduced mortality. No quality indicators relating to clinical management associated with mortality. Better communication on discharge summaries associated with reduced mortality. ConclusionsOutcomes for patients with AKI in hospital remain poor. Regional variation in care exists. Work is needed to assess whether improving and standardising care improves patient outcomes.

Applying the Urgent Maternal Warning Signs Initiative in a Novel Setting.

Symptoms of urgent maternal warning signs (UMWS) may occur during pregnancy or after delivery and may have lasting effects or indicate a life-threatening situation if left untreated. The state department of health sponsored a quality improvement project (QIP) to broaden the reach of UMWS education beyond traditional clinical settings, to public health settings where prenatal and postpartum women are seen. Specifically, the QIP implemented process changes to provide education (written and verbal) and resources to individuals receiving services from Women, Infants, and Children clinics during pregnancy and up to 12 weeks postpartum. Clinics submitted participant-level data although the Research Electronic Data Capture secure data portal. The key results indicated an increase in both written and verbal education. In addition, the project monitored referrals made specific to conditions identified through project-specific data collection and the provision of UMWS education.

Invigoration of E-Judicial System in Nigeria: Challenges And Improvement Strategies to Achieve SDG 2030

Over the years, judicial system in Nigeria has been known for its conservatism and conventional methods of administering justice. Considering the realities of the global socio- economic vicissitudes, there is urgent need to improve the effectiveness and efficiency of the judicial system in Nigeria. Therefore, this paper examines the e-judicial system in Nigeria, challenges and improvement strategies to achieve Sustainable Development Goal (SDG) 16 of the United Nations agenda 2030. The paper explored scholarly works focused on judiciary system to dissect the concept of e-judiciary system and identified the challenges faced by the judiciary system in Nigeria to include inadequate availability of ICT facilities and maintenance, inadequate availability of stable electricity, lack of ICT skills by judicial personnel, poor network system and unauthorized access to web portal by hackers. From the findings of the study, strategies to invigorate e-judicial system in Nigeria include, provision of adequate ICT facilities by federal and state government, regular appraisal and upgrading of the available ICT facilities, provision of stable electricity, monitoring of telecommunication industry activities by Nigerian Communications Commission (NCC) to ensure maximum efficiency, development of a Unified E-judicial Security Portal in form of encryption keys to provide strict access to courts’ websites, organization of workshop, seminar and conferences to train judicial personnel on utilization of e-judiciary system in the administration of justice. The study further recommends that the Nigerian Bar Association should advocate the need for e-judicial system in various programmes they organize.

Adult Patients' Experiences of Using a Patient Portal With a Focus on Perceived Benefits and Difficulties, and Perceptions on Privacy and Security: Qualitative Descriptive Study.

Patient portals can facilitate patient engagement in care management. Driven by national efforts over the past decade, patient portals are being implemented by hospitals and clinics nationwide. Continuous evaluation of patient portals and reflection of feedback from end users across care settings are needed to make patient portals more user-centered after the implementation. The aim of this study was to investigate the lived experience of using a patient portal in adult patients recruited from a variety of care settings, focusing on their perceived benefits and difficulties of using the patient portal, and trust and concerns about privacy and security. This qualitative descriptive study was part of a cross-sectional digital survey research to examine the comprehensive experience of using a patient portal in adult patients recruited from 20 care settings from hospitals and clinics of a large integrated health care system in the mid-Atlantic area of the United States. Those who had used a patient portal offered by the health care system in the past 12 months were eligible to participate in the survey. Data collected from 734 patients were subjected to descriptive statistics and content analysis. The majority of the participants were female and non-Hispanic White with a mean age of 53.1 (SD 15.34) years. Content analysis of 1589 qualitative comments identified 22 themes across 4 topics: beneficial aspects (6 themes) and difficulties (7 themes) in using the patient portal; trust (5 themes) and concerns (4 themes) about privacy and security of the patient portal. Most of the participants perceived the patient portal functions as beneficial for communicating with health care teams and monitoring health status and care activities. At the same time, about a quarter of them shared difficulties they experienced while using those functions, including not getting eMessage responses timely and difficulty finding information in the portal. Protected log-in process and trust in health care providers were the most mentioned reasons for trusting privacy and security of the patient portal. The most mentioned reason for concerns about privacy and security was the risk of data breaches such as hacking attacks and identity theft. This study provides an empirical understanding of the lived experience of using a patient portal in adult patient users across care settings with a focus on the beneficial aspects and difficulties in using the patient portal, and trust and concerns about privacy and security. Our study findings can serve as a valuable reference for health care institutions and software companies to implement more user-centered, secure, and private patient portals. Future studies may consider targeting other patient portal programs and patients with infrequent or nonuse of patient portals.

The WALK HOP program: a French innovative multicentric home-based cardiac rehabilitation initiative

Abstract Funding Acknowledgements Type of funding sources: Public grant(s) – National budget only. Main funding source(s): Fonds pour l'innovation du système de santé (FISS) - France. Background Cardiac rehabilitation (CR) has demonstrated scientific benefits in terms of morbidity and mortality. In France, 2019 national data indicates that only 22,3% of coronary patients benefit from CR. The development of alternative programs to center-based cardiac rehabilitation (CBCR) must be considered as a public health priority and requires a reorganization of ambulatory care pathways. Purpose The objective of the "Walk Hop" program is to demonstrate that home-based cardiac tele-rehabilitation (HBCT) is a complementary and safe approach to CBCR, able to increase the proportion of patients benefiting from a rehabilitation program. Methods This feasibility study started begin of 2022. 3,200 coronary patients will be recruited in 8 participating cardiac rehabilitation centers (CRC). Total duration of the experiment is 42 months. The program is financially supported by the French authorities. The HBCT solution developed for the study is proposed to patients by the CRC cardiologist. A multidisciplinary platform consisting of a secure portal and an application allows bidirectional communication. Patients are equiped with a cycle ergometer and a validated heart rate monitor. The application presents aerobic and muscle strenghtening activities and therapeutic education and collects data from the sessions carried out, adherence to the program, symptoms and quality of life. Results By october 2022, 157 active patients have been included in the program with a large majority of men (86%). Mean age is 53,9 ± 9,0. Hypercholesterolemia is noted in 36,9% of the included patients, smoking in 31%, arterial hypertension in 30,6% and diabetes in 11,1%. Obesity/overweight affects 60% of the population. Mean time from angioplasty to initiation of the rehabilitation is 81 ± 90 days. Mean number of home rehabilitation sessions is 21 and a total of 3342 home sessions have been realized. No cardiovascular event or rehospitalization have been registered since the beginnng. Mean adherence to the prescribed sessions is 80 ± 20% and the mean power gain at the end of the program is 14,6 ± 9,9 %. 94% of the patients expressed satisfaction or high satisfaction at the end of the program. Conclusion(s) The Walk Hop program is evaluating the feasibility and acceptability of HBCT with remote monitoring and digital assistance by smartphone. The preliminary data are encouraging in view of the final expected impact: greater cost-effective access to rehabilitation programs by removing obstacles like distance or resumption of work. It is also expected that HBCT will provide an improvement in the long-term maintenance benefits.

Randomized evaluation of routine beta-blocker therapy after myocardial infarction quality of life (RQoL): design and rationale of a multicentre, prospective, randomized, open, blinded endpoint study.

Most cases of acute myocardial infarction (MI) in Sweden are treated with long-term β-blocker therapy as secondary prevention. Case studies and patient reports have indicated negative effects of β-blockers including symptoms of depression, fatigue, sexual dysfunction, and general low mood, all related to reduced quality of life (QoL). To date, no recent large-scale, randomized trial has explored the effects of β-blockers on these factors. The ongoing Randomized Evaluation of Decreased Usage of beta-bloCkErs after myocardial infarction (REDUCE): quality of life (RQoL) study is a multicentre, prospective, randomized pre-specified substudy aiming to evaluate the effects of β-blockers on self-reported measures of QoL. Following randomized allocation to long-term β-blocker or no β-blocker treatment, patients complete a total of six baseline measures pertaining to QoL, sexual functioning, and perceived side effects. Data collection is optionally carried out online through a unique and secure portal and repeated again at two follow-up time points. Recruitment began in July 2018. Data from the first 100 patients showed that at the first follow-up, 93% had completed the questionnaires, which decreased to 81% at the second follow-up. The method of digital data collection was utilized by over half of the patients recruited so far. Data from the first 100 patients indicate success in terms of study design and recruitment. The RQoL substudy investigates the effects of β-blockers on self-reported measures of QoL in MI patients and will potentially contribute to the limited knowledge of QoL-related side effects reported in conjunction with β-blocker use. Eudra CT number, 2017-002336-17; Clinical trial.gov identifier, NCT03278509.

Prediction of low pulse oxygen saturation in COVID-19 using remote monitoring post hospital discharge

BackgroundMonitoring systems have been developed during the COVID-19 pandemic enabling clinicians to remotely monitor physiological measures including pulse oxygen saturation (SpO2), heart rate (HR), and breathlessness in patients after discharge from hospital. These data may be leveraged to understand how symptoms vary over time in COVID-19 patients. There is also potential to use remote monitoring systems to predict clinical deterioration allowing early identification of patients in need of intervention. MethodsA remote monitoring system was used to monitor 209 patients diagnosed with COVID-19 in the period following hospital discharge. This system consisted of a patient-facing app paired with a Bluetooth-enabled pulse oximeter (measuring SpO2 and HR) linked to a secure portal where data were available for clinical review. Breathlessness score was entered manually to the app. Clinical teams were alerted automatically when SpO2 < 94 %. In this study, data recorded during the initial ten days of monitoring were retrospectively examined, and a random forest model was developed to predict SpO2 < 94 % on a given day using SpO2 and HR data from the two previous days and day of discharge. ResultsOver the 10-day monitoring period, mean SpO2 and HR increased significantly, while breathlessness decreased. The coefficient of variation in SpO2, HR and breathlessness also decreased over the monitoring period. The model predicted SpO2 alerts (SpO2 < 94 %) with a mean cross-validated.sensitivity of 66 ± 18.57 %, specificity of 88.31 ± 10.97 % and area under the receiver operating characteristic of 0.80 ± 0.11. Patient age and sex were not significantly associated with the occurrence of asymptomatic SpO2 alerts. ConclusionResults indicate that SpO2 alerts (SpO2 < 94 %) on a given day can be predicted using SpO2 and heart rate data captured on the two preceding days via remote monitoring. The methods presented may help early identification of patients with COVID-19 at risk of clinical deterioration using remote monitoring.

Claims-based cardiac monitoring (CM) in patients (Pts) receiving trastuzumab (TZ).

324 Background: TZ in HER2-positive breast cancer (BC) has established improved outcomes in certain Pts. TZ carries a black box warning and a recommendation for CM in all Pts prior to and during treatment (tx) Few studies have evaluated real-world CM compliance during tx. Methods: Retrospective, cross-sectional analysis was conducted to identify CM compliance among BC pts receiving TZ, using a limited data set of administrative claims data consisting of female Pts who were continuously insured over a 24-month period between Jan 1, 2019 and Dec 31, 2020, as provided through a secure portal by Blue Cross Blue Shield Association. [1] . BC diagnosis was confirmed by ICD-9 code, while tx with TZ or biosimilar was confirmed through Healthcare Common Procedure Coding System codes. A care episode spanned 14 months, including 123 days prior to first TZ dose (Index Date) and at least 307 days of follow up. Two cohorts (eligibility for both dx and continually insured status of female commercial Pts, 2018-2019 and 2019-2020) were analyzed across four tx Phases (Pre-Tx Phase [days -123-+ Index Date as day 1], Phase 1 [days 61-123], Phase 2 [days 153-215], Phase 3 [days 245-307]). Phase denominators were calculated independently, only including Pts with ongoing TZ tx for each Phase. [1] Blue Cross Blue Shield Association is an association of independent, locally operated Blue Cross and Blue Shield companies. Results: Pts in each Phase and cohort ranged from 2,304 (Full Compliance 2019-2020) to 3,263 (Pre-Tx 2019-2020). Similar results were seen in both cohorts, with highest proportion of Pts receiving CM in Pre-Tx phase. Overall compliance in Pre-Tx Phase and all subsequent Phases was low; nearly two-thirds of Pts missed one or more CM tests. Drop-off in CM testing occurred in each subsequent tx Phase (Table). Conclusions: Continued decline in CM over time suggests lack of awareness for potential late TZ cardiac toxicity. Further research regarding why Pts are not receiving recommended baseline and on-treatment CM is needed. Routine CM during TZ tx may be a quality indicator for practices, payers, and quality improvement programs.[Table: see text]

A National Registry for People With All Stages of Kidney Disease: The National Kidney Foundation (NKF) Patient Network

The National Kidney Foundation (NKF) launched the first national US kidney disease patient registry, the NKF Patient Network, that is open to patients throughout the continuum of chronic kidney disease (CKD). The Network provides individualized education and will facilitate patient-centered research, clinical care, and health policy decisions. Here, we present the overall design and the results of a feasibility study that was conducted July through December2020. Longitudinal observational cohort study of patient-entered data with or without electronic health care record (EHR) linkage in collaboration with health systems. People with CKD, age≥18 years, are invited through their provider, NKF communications, or national outreach campaign. People self-enroll and share their data through a secure portal that offers individualized education and support. The first health system partner is Geisinger. Any cause and stage of CKD, including dialysis and kidney transplant recipients. Feasibility of the EHR data transfer, participants' characteristics, and their perspectives on usability and content. Data were collected and analyzed through the registry portal powered by the Pulse Infoframe healthie 2.0 platform. During the feasibility study, 80 participants completed their profile, and 42 completed a satisfaction survey. Mean age was 57.5 years, 51% were women, 83% were White, and 89% were non-Hispanic or Latino. Of the participants, 60% were not aware of their level of estimated glomerular filtration rate and 91% of their urinary albumin-creatinine ratio. Challenges for the Network are lack of awareness of kidney disease for many with CKD, difficulty in recruiting vulnerable populations or those with low digital readiness, and loss to follow-up, all leading to selection bias. The Network is positioned to become a national and international platform for real-world data that can inform the development of patient-centered research, care, and treatments.

Self-Reported Data and Physician-Reported Data in Patients With Eosinophilic Granulomatosis With Polyangiitis: Comparative Analysis.

BackgroundPatient-based registries can help advance research on rare diseases such as eosinophilic granulomatosis with polyangiitis (EGPA), a complex multiorgan form of antineutrophil cytoplasmic antibody (ANCA)–associated vasculitis.ObjectiveThe aim of this study is to compare patient-reported and physician-reported data on manifestations, treatments, and outcomes for patients with EGPA.MethodsWe completed a comparative analysis of patients ≥18 years with EGPA in Canada and the United States from the following 2 cohorts: (1) The Vasculitis Patient-Powered Research Network (VPPRN), a self-enrolled secure portal with patient-entered data updated quarterly (2014-2019) and (2) the Vasculitis Clinical Research Consortium (VCRC) observational studies, a physician-entered database (2003-2019) of patients who fulfilled the 1990 American College of Rheumatology classification criteria for EGPA. The studied parameters included demographic characteristics, clinical manifestations, ANCA status, treatments, and relapses.ResultsData from 195 patients with a validated diagnosis of EGPA in the VPPRN and 354 patients enrolled in the VCRC were analyzed. Compared to the VCRC cohort, the patients in the VPPRN cohort were more likely to be female (135/195, 69.2% compared to 209/354, 59%; P=.02) and younger at diagnosis (47.3 compared to 50.0 years; P=.03); both cohorts reported similar frequencies of asthma (177/184, 96.2% in the VPPRN cohort compared to 329/354, 92.9% in the VCRC cohort; P=.13) and cardiac manifestations (44/153, 28.8% compared to 75/354, 21.2%; P=.06), but the VPPRN cohort reported less frequent lung manifestations other than asthma and more frequent disease manifestations in all other organ systems. The ANCA positivity was 48.9% (64/131) in the VPPRN patients compared to 38.9% (123/316; P=.05) in the VCRC cohort. Relapsing disease after study enrollment was reported in 32.3% (63/195) of patients in the VPPRN compared to 35.7% (99/277) of patients in the VCRC. Most therapies (GC, cyclophosphamide, mepolizumab) were used at similar frequencies in both groups, except for rituximab with VPPRN patients reporting more use than the VCRC cohort (47/195, 24.1% compared to 29/277, 10.5%; P<.001).ConclusionsOverall, patients and physicians report manifestations of EGPA at similar frequencies. However, observed differences between patient and physician reports imply the potential occurrence of selection biases. These results support the use of patient-reported data in EGPA but also the need for careful consideration of disease-specific definitions for the study of EGPA and how patient- and physician-reported data are collected.Trial RegistrationClinicalTrials.gov NCT00315380, https://clinicaltrials.gov/ct2/show/NCT00315380; ClinicalTrials.gov NCT01241305, https://clinicaltrials.gov/ct2/show/NCT01241305

Association of Convalescent Plasma Treatment With Clinical Status in Patients Hospitalized With COVID-19

COVID-19 convalescent plasma (CCP) is a potentially beneficial treatment for COVID-19 that requires rigorous testing. To compile individual patient data from randomized clinical trials of CCP and to monitor the data until completion or until accumulated evidence enables reliable conclusions regarding the clinical outcomes associated with CCP. From May to August 2020, a systematic search was performed for trials of CCP in the literature, clinical trial registry sites, and medRxiv. Domain experts at local, national, and international organizations were consulted regularly. Eligible trials enrolled hospitalized patients with confirmed COVID-19, not receiving mechanical ventilation, and randomized them to CCP or control. The administered CCP was required to have measurable antibodies assessed locally. A minimal data set was submitted regularly via a secure portal, analyzed using a prespecified bayesian statistical plan, and reviewed frequently by a collective data and safety monitoring board. Prespecified coprimary end points-the World Health Organization (WHO) 11-point ordinal scale analyzed using a proportional odds model and a binary indicator of WHO score of 7 or higher capturing the most severe outcomes including mechanical ventilation through death and analyzed using a logistic model-were assessed clinically at 14 days after randomization. Eight international trials collectively enrolled 2369 participants (1138 randomized to control and 1231 randomized to CCP). A total of 2341 participants (median [IQR] age, 60 [50-72] years; 845 women [35.7%]) had primary outcome data as of April 2021. The median (IQR) of the ordinal WHO scale was 3 (3-6); the cumulative OR was 0.94 (95% credible interval [CrI], 0.74-1.19; posterior probability of OR <1 of 71%). A total of 352 patients (15%) had WHO score greater than or equal to 7; the OR was 0.94 (95% CrI, 0.69-1.30; posterior probability of OR <1 of 65%). Adjusted for baseline covariates, the ORs for mortality were 0.88 at day 14 (95% CrI, 0.61-1.26; posterior probability of OR <1 of 77%) and 0.85 at day 28 (95% CrI, 0.62-1.18; posterior probability of OR <1 of 84%). Heterogeneity of treatment effect sizes was observed across an array of baseline characteristics. This meta-analysis found no association of CCP with better clinical outcomes for the typical patient. These findings suggest that real-time individual patient data pooling and meta-analysis during a pandemic are feasible, offering a model for future research and providing a rich data resource.

Securely sharing DSMB reports to speed decision making from multiple, concurrent, independent studies of similar treatments in COVID-19.

As clinical trials were rapidly initiated in response to the COVID-19 pandemic, Data and Safety Monitoring Boards (DSMBs) faced unique challenges overseeing trials of therapies never tested in a disease not yet characterized. Traditionally, individual DSMBs do not interact or have the benefit of seeing data from other accruing trials for an aggregated analysis to meaningfully interpret safety signals of similar therapeutics. In response, we developed a compliant DSMB Coordination (DSMBc) framework to allow the DSMB from one study investigating the use of SARS-CoV-2 convalescent plasma to treat COVID-19 to review data from similar ongoing studies for the purpose of safety monitoring. The DSMBc process included engagement of DSMB chairs and board members, execution of contractual agreements, secure data acquisition, generation of harmonized reports utilizing statistical graphics, and secure report sharing with DSMB members. Detailed process maps, a secure portal for managing DSMB reports, and templates for data sharing and confidentiality agreements were developed. Four trials participated. Data from one trial were successfully harmonized with that of an ongoing trial. Harmonized reports allowing for visualization and drill down into the data were presented to the ongoing trial's DSMB. While DSMB deliberations are confidential, the Chair confirmed successful review of the harmonized report. It is feasible to coordinate DSMB reviews of multiple independent studies of a similar therapeutic in similar patient cohorts. The materials presented mitigate challenges to DSMBc and will help expand these initiatives so DSMBs may make more informed decisions with all available information.

OP312 Developing A Tool-kit For Assessment Of Autism Spectrum Disorder

IntroductionBefore the coronavirus pandemic, children who were on the Early Years Neurodevelopment (EYND) assessment pathway and suspected to have possible Autism Spectrum Disorder (ASD), received clinic based appointments. This process included a parental interview by a doctor, a specialist speech and language therapy assessment, autism diagnostic observation schedule (ADOS), which were all carried out on hospital sites. These were postponed in March following national guidance. Our aim was to continue providing accurate evidence-based service for ASD diagnosis.MethodsWe utilised evidence-based telehealth methods to perform a specialist speech and language assessment in a child's home via video call. Parents were also invited to share videos of everyday activities via a secure portal. We could observe the child in a meaningful setting and witness functional impact of their needs. Each case is discussed by a multiagency panel based on DSM-V criteria.Online training was undertaken by professionals to deliver the Brief Observation of Autism Symptoms (BOSA) based on the ADOS for COVID times. Parents were coached by the therapist to enable them to become the administrator, rather than a professional.ResultsTelephonic feedback from the first ten parents whose children underwent a telehealth assessment has been positive; the home was deemed more natural and for some less distressing than clinic. Formal patient surveys have been devised for both the telehealth and BOSA clinic assessments. Analysis is expected by the end of March.To date we have been able to reach an outcome for thirty children, the diagnosis of ASD for twenty-four children and the other six received a diagnosis of global developmental delay or language disorder.ConclusionsWe expect that telehealth will reduce the number of assessments before an ASD diagnosis is made resulting in more prudent healthcare. The new methods have demonstrated clear increased parental participation.

139 Understanding the Psychosocial Impact of the Novel Coronavirus Pandemic – A Focus on Children and Families

Primary Subject areaSocial PaediatricsBackgroundThe novel coronavirus (COVID-19) pandemic is a major global threat that emerged in 2020. Many countries have enacted policies such as mandatory school closures, business closures, and self-quarantining to keep people at home and prevent further spread of the virus. Previous research has shown that pandemics and subsequent disease containment measures negatively affect children and families, both psychosocially and economically.ObjectivesThe current study explores the potential psychosocial impacts of the COVID-19 pandemic and subsequent disease containment measures on a number of domains (employment/business, education, finances, medical care, access to medication, technology, children/family, access to community services) through an online survey. The current abstract focuses on the emotional well-being of children and how families have been affected by the restrictions and changes related to the COVID-19 pandemic.Design/MethodsParticipants were asked to complete an online survey through a secure portal. The survey consisted of questions about household demographics and socio-economic status (SES), as well as five psychometric scales measuring satisfaction with life, psychological well-being, anxiety, depression, and substance use, and specific questions about how the COVID-19 pandemic has impacted respondents’ daily lives in the previously identified domains. This is the first of four longitudinal surveys that will be conducted throughout this study.ResultsA total of 571 participants completed the survey. Of these participants, 41.3% identified as being a parent or guardian with children under 18. The focus of this abstract is the subset of respondents with children. Roughly three quarters of participants identified that their children were emotionally impacted by COVID-19, the school closures, or missing friends or family (Yes = 46.6%; Somewhat = 30.5%). Parents also reported loss of access to childcare, disruptions to their visits with their children living outside the home, and feeling like they could not access timely medical care for their children. Demographic information and other relevant responses and information can be found in Tables 1 and 2, respectively.ConclusionThe impacts of the COVID-19 pandemic will be felt for years to come and will shape an entire generation of children. Even in the current sample, which consisted largely of individuals from medium-high SES households, most reported that children had been impacted emotionally. Understanding and mitigating the impact on children and adapting resources in the short term and the long-term to meet the growing needs of our communities must be top priorities for pediatricians and community service providers.

A retrospective cohort study of clinical factors, visit patterns, and demographic factors associated with use of remote communications in patients with headache.

To identify the characteristics associated with high utilization of remote communications (RCs) in patients with headache. Patients with headache frequently communicate with their providers using secure portal messaging and telephone calls. However, clinical and demographic factors as well as visit patterns associated with RC utilization remain poorly characterized. We retrospectively analyzed data from patients with headache who were evaluated in the ambulatory neurology faculty practice at the Icahn School of Medicine at Mount Sinai in New York between January 1 and June 30, 2019. We extracted clinical and demographic characteristics, total office visits, secure MyChart portal messages, and telephone encounters from our institutional data warehouse. We defined high RC and MyChart utilization as the top tertile of RC and MyChart message volume, respectively, and assessed the relationship between patient characteristics and high RC (primary outcome), as well as high MyChart utilization (secondary outcome). We characterized the relationship between clinicodemographic characteristics and the ratio of MyChart messages to total RCs (secondary outcome). We identified 1390 patients, of whom 477 (34.3%) were high RC utilizers and 321 (23.1%) were high MyChart utilizers. High RC utilizers generated 3306/3921 (84.3%) RCs. The presence of chronic headache (aOR 2.31, 95% CI 1.75-3.03, p<0.0001), cluster headache (aOR 18.3, 95% CI 5.0-71.7, p=0.001), and migraine (aOR 3.82, 95% CI 1.93-9.3, p=0.011) was associated with high RC utilization. Patients ≥65years of age were less likely to engage in MyChart messaging as a proportion of RC (191/680, 28.1%) compared with patients 18-30years of age (243/620, 39.2%, p=0.049) and 30-64years of age (1172/2721, 43.1%, p<0.0001). A minority of patients with headache (477/1390; 34.3%) generated the majority (3306/3921; 84.3%) of RCs. Our findings should be validated in external patient cohorts with the objective of developing strategies to optimize RC utilization.

Compulsively Moral: OCD, Ethics, and the Law.

Compulsively Moral: OCD, Ethics, and the Law.

Creation of a pharmacogenomics patient portal complementary to an existing institutional provider-facing clinical decision support system.

BackgroundApplied pharmacogenomics presents opportunities for improving patient care through precision medicine, particularly when paired with appropriate clinical decision support (CDS). However, a lack of patient resources for understanding pharmacogenomic test results may hinder shared decision-making and patient confidence in treatment. We sought to create a patient pharmacogenomics education and results delivery platform complementary to a CDS system to facilitate further research on the relevance of patient education to pharmacogenomics.MethodsWe conceptualized a model that extended the data access layer of an existing institutional CDS tool to allow for the pairing of decision supports offered to providers with patient-oriented summaries at the same level of phenotypic specificity. We built a two-part system consisting of a secure portal for patient use and an administrative dashboard for patient summary creation. The system was built in an ASP.NET and AngularJS architecture, and all data was housed in a HIPAA-compliant data center, with PHI secure in transit and at rest.ResultsThe YourPGx Patient Portal was deployed on the institutional network in June 2019. Fifty-eight unique patient portal summaries have been written so far, which can provide over 4500 results modules to the pilot population of 544 patients. Patient behavior on the portal is being logged for further research.ConclusionsTo our knowledge, this is the first automated system designed and deployed to provide detailed, personalized patient pharmacogenomics education complementary to a clinical decision support system. Future work will expand upon this system to allow for telemedicine and patient notification of new or updated results.