BACKGROUND:Routine cognitive screenings have been recommended by several multiple sclerosis (MS) groups. One option are mobile-based programs, which can be administered using a smartphone or tablet. This scoping review aimed to identify the available mobile-based cognitive screening tools for persons with MS and understand potential gaps that should be considered when developing future cognitive screening tools. METHODS:Systematic searches of the literature (PubMed, MEDLINE, CINHAL, and PsycINFO) and commercial application stores (Apple App Store and Google Play Store) were conducted in English through March 2024. A cognitive screening tool was defined as a program that assessed one or more cognitive domains objectively, with the assessment time taking 20 minutes or less. Only programs that could be administered using a mobile device and have been evaluated in at least one peer-review study with adults with MS (≥ 18 years old) were included. Information about the tool's availability, specificity for MS, number of tests and assessed domains, administration and scoring, stimuli and psychometric data, and inclusion of patient-reported outcomes (PROs) were extracted. RESULTS:Thirty-two cognitive screening tools met the eligibility criteria. Five of the 16 commercially available programs were designed specifically for persons with MS, compared to 12 of the 16 investigational programs. Most programs were available in multiple languages, did not require a technician, and offered automated scoring. Limited screening options beyond information processing speed and availability of psychometric data, involvement of patient stakeholders, and integration with the electronic health record (EHR) were identified as weaknesses that could be addressed in the next generation of programs. CONCLUSIONS:While more mobile-based options are becoming available, including tools that also offer depression screening and other PROs, there are still limitations that can affect their utility as routine cognitive screeners in a clinic setting. Considerations for addressing these weaknesses, including increasing the involvement of persons with MS in the development process, are discussed.
When designing mobile health (mHealth) applications for persons with multiple sclerosis (PwMS), patient stakeholder involvement is crucial to identify user interface (UI) and experience (UX) issues that can affect usability and accessibility. PwMS can experience impairments in cognition, fine motor functioning, and vision, which can impact adoption of mHealth. This research highlights the specific needs of this population when designing accessible interfaces for remote clinical interventions, as evidenced through the development process of the Thought Reframing Worksheet in Managing My MS My Way (M4W), a novel mHealth-based fatigue self-management application. Patient stakeholders (n = 10) completed think-aloud procedures with a low-fidelity prototype development in Figma. Action points for identified UI/UX issues were implemented in the high-fidelity prototype. After deploying the high-fidelity version through React Native Expo, expert-led cognitive walkthroughs (n = 3) were conducted, with process flow errors and significant design consistencies identified and addressed. The next steps for usability testing, including a heuristic evaluation and field testing, are detailed. The final version of M4W will be an accessible mHealth application that reflects the needs of users with cognitive, fine motor, and visual impairments.
PURPOSE:This study aimed to evaluate 1) whether having a vascular comorbidity (i.e., hypertension, hyperlipidemia, heart disease, and diabetes) was associated with self-reported issues with functional activities among persons with multiple sclerosis (MS) and 2) if certain contributing factors (i.e., disability, depression, and fatigue) might explain the observed relationships. MATERIALS AND METHODS:Participants (n = 263) completed the Functional Status Index (FSI), which assessed five domains: gross mobility, hand activities, personal care, home chores, and social/role activities. After bivariate analyses, individual linear regressions were conducted for each FSI domain, controlling for demographics. Follow-up mediation analyses were done for each of the three mediators. RESULTS:Participants with vascular comorbidities endorsed more issues on all five domains, with the demographic-adjusted associations with gross mobility (b = 0.34, p = 0.002), hand activities (b = 0.15, p = 0.006), home chores (b = 0.44, p = 0.003), and social/role activities (b = 0.32, p = 0.024) remaining significant. Disability fully mediated the effects of vascular comorbidities on these domains, with partial and full mediations observed with depression and fatigue. Diabetes emerged as a significant individual comorbidity in several models. CONCLUSIONS:Vascular comorbidities, diabetes in particular, are associated with persons with MS endorsing worse ratings on functional outcomes, with disability, depression, and fatigue explaining these associations.
Background: Self-management programs have been used with success in several clinical populations, and there is a growing body of evidence to support their use among persons with multiple sclerosis (MS). This group aimed to develop a novel self-management program, Managing My MS My Way (M4W), which is based in social cognitive theory and contains evidence-based strategies that have been shown to be effective for persons with MS. Furthermore, persons with MS would serve as stakeholders throughout the development process to ensure that the program would be useful and encourage adoption. This paper outlines the initial development stages of M4W, including determining 1) stakeholders' interest in a self-management program, 2) the general focus of the program, 3) the delivery method of the program, 4) the content of the program, and 5) potential barriers and adaptations.Methods: A three-stage study consisting of an anonymous survey (n = 187) to determine interest, topic, and delivery format; semi-structured interviews (n = 6) to follow-up on the survey results; and semi-structured in-terviews (n = 10) to refine the content and identify barriers.Results: Over 80% of survey participants were somewhat or very interested in a self-management program. Fa-tigue was the topic with the greatest amount of interest (64.7%). An internet-based program (e.g., mobile health or mHealth) was the most preferred delivery method (37.4%), with the first group of stakeholders proposing a module-based system with an initial in-person orientation session. The second group of stakeholders were overall enthusiastic about the program, giving moderate to high confidence scores for each of the proposed interven-tional strategies. Suggestions included skipping sections that were not applicable to them, setting reminders, and seeing their progress (e.g., visualizing their fatigue scores as they move through the program). In addition, stakeholders recommended larger font sizes and speech-to-text entry.Conclusions: Input from the stakeholders has been incorporated into the prototype of M4W. The next steps will be to test this prototype with another group of stakeholders to assess its initial usability and identify issues before developing the functional prototype.
Background Since COVID-19 rapidly made telemedicine a necessity, it is clear that virtual patient visits are going to be part of the new norm in continued outpatient care as we move into a postpandemic reality. However, we are still learning about patients’ experiences and preferences amid the rapid and widespread deployment of telemedicine. Objective The aim of this paper is to determine patients’ satisfaction with and experiences of telehealth services during the COVID-19 pandemic among those seeking care at Community Health Center Association of Connecticut member clinics. Methods Data were collected using a 24-question phone survey, which asked about telehealth use, frequency of telehealth visits, and barriers experienced. Participants were eligible if they aged 18 years or older, were English speaking, and were receiving care at 1 of 3 participating Community Health Center Association of Connecticut clinics. Results A total of 383 participants completed the phone survey throughout July 2021. The median age grouping was between 55 and 59 years, and the majority (63%) were female. Since COVID-19, in total, 78% reported having one or more audio-only telehealth visits (from 31% before), and 53% had one or more video telehealth visit (from 13% before). Most reported being very satisfied with their visits (86%) and that they felt confident in their provider’s ability to address their needs (74%). Most did not experience technical problems or have difficulty understanding how to connect to their provider. Even among older participants (60 years and older), only 28% reported having difficulty understanding how to connect to their provider, compared with 23% of 40- to 59-year-old patients and 18% of 18- to 39-year-old patients. Moreover, 45% reported being very likely to continue using telehealth even after the pandemic. However, 52% would have liked the option of in-person visits if they had been available in the past year. Conclusions These results suggest that most patients find telehealth visits an appropriate and accessible means of accessing health care, though some still like the option of seeing their provider in person. Future work should compare provider and patient experiences and identify optimal means of making the encounters mutually satisfying and beneficial. Conflicts of Interest None declared.
In moments that matter, clinicians frequently make treatment decisions based upon incomplete, inaccurate, and outdated medication histories. Poorly reconciled medications often lead to a series of unfortunate events - MedWreck. There is a need for a national, coordinated, strategic effort to widen important ongoing initiatives to improve medication reconciliation.
BACKGROUND:The Multiple Sclerosis Resiliency Scale (MSRS) was designed to assess factors connected to resilience when facing MS-related challenges. Although the MSRS has demonstrated good internal consistency and construct validity, its test-retest reliability has yet to be established. Identifying the minimal detectable change (MDC) of the scale will also improve its utility as an outcome measure for resilience-based interventions. This study aimed to determine the test-retest reliability and MDC of the MSRS.METHODS:Participants were 62 persons with MS who completed the MSRS twice, with a mean ± SD of 16.60 ± 3.97 days (range, 14-30 days) between assessments. Test-retest reliability was evaluated using a 2-way, random-effects, single-measurement intraclass correlation coefficient (ICC), with agreement between time 1 and time 2 visualized with a Bland-Altman plot. The MDC was calculated using the standard error of measurement with a 95% CI.RESULTS:At time 1, the mean ± SD MSRS score was 77.19 ± 11.97 (range, 45.83-97.00); at time 2, the mean ± SD score was 76.38 ± 12.75 (range, 46-98). The MSRS total score had good test-retest reliability (ICC = 0.88), with the subscale ICCs ranging from 0.77 (MS Peer Support) to 0.93 (Spirituality). The MDC for the total score was 11.95.CONCLUSIONS:These findings suggest that the MSRS has good test-retest reliability and that persons with MS with a difference of 12 points or more between assessments have experienced a reliable change. The results support the utility of the MSRS as a potential outcome measure for MS-related resilience.
Background Broad health disparities (HDs) persist in Connecticut and the United States between minority and White patients, especially in access to and the utilization of behavioral telehealth services. Objective We aimed to determine the geographic distribution of HDs in Connecticut between Black female and White female adults in Medicaid behavioral telehealth utilization in 2019 and 2020. Methods We used the following spatial Connecticut data: (1) behavioral health utilization from Medicaid claims, from the Connecticut Department of Social Services, for the third quarters of 2019 and 2020; (2) mental health and drug and alcohol treatment facilities and ZCTA (ZIP Code Tabulation Area)-level descriptors from PolicyMap; and (3) Connecticut ZIP-to-ZCTA crosswalk data. Data were joined spatially, merged, and analyzed using spatial autoregressive models in Stata 17 (with outcome, predictors, and errors spatial lags). We computed ZCTA-level HDs comparing Black and White adult female Medicaid beneficiaries’ rates of face-to-face and telehealth behavioral services utilization. Spatial regressions were used to test spatial effects, which are extensions of classic regressions, that add neighbors’ effects to covariates. Results Distances to nearest treatment facility vary quite widely in Connecticut by ZCTAs, from 0.06 mile to 13.4 miles—3.5 miles on average. The overall White female versus Black female HDs in behavioral health care utilization were impacted by the distance to the nearest facility, such that ZCTAs farther away from the nearest facility display larger Black versus White HDs—nearly statistically significant effect in 2019 and significant effect in 2020. In 2020, in ZCTAs situated farther away from treatment facilities, both White female and Black female Medicaid patients had higher telebehavioral health utilization (spatial effects +1.3% points and +2.0% points, respectively, for 1 more mile farther away). The differential Black versus White female HDs in telebehavioral health care utilization were not impacted by distance to nearest facility, according to the total effect (direct and indirect through neighboring ZCTAs; P=.26). Conclusions Quantitative analyses indicate broad differences in Medicaid enrollment and the utilization of behavioral health services among Black and White female Medicaid recipients in Connecticut and that these differences were rather stable between 2019 and 2020. It appears that the expansion of telebehavioral health services in 2020 enhanced the access to treatment among residents who were located furthest away from providing facilities. Conflicts of Interest None declared.
Accurate medication lists are essential data required to make clinically informed decisions. Obtaining a comprehensive, up-to-date medication list is difficult for clinicians. Patients have limited input into reviewing and reconciling their own medication data. Ideally, a medication list would comprise a 360-degree view of all prescribed, dispensed, purchased medications and would seamlessly connect patients and providers to medication data from multiple sources. While an ideal medication list would capture every aspect of medication management, in reality a Best-Possible Medication History (BPMH) is a more achievable goal. In an effort to realize a BPMH and to facilitate the goals of the State of Connecticut's Office of Health Strategy's Medication Reconciliation and Polypharmacy Committee (MRPC), we engaged stakeholders (patients, clinicians, advocates) in focus-groups and interviews to solicit feedback on the user interface requirements for a BPMH. Feedback was obtained via facilitated discussions that occurred in-person, via virtual meetings, and through online surveys.
The Fast Healthcare Interoperability Resources (FHIR) from the international Health Language Seven (HL7) organization has been mandated by the United States Office of National Coordinator to promote the secure exchange of healthcare data for patients through the use of cloud-based APIs. FHIR reformulated the HL7 XML standard by defining 135+ resources that conceptualize the different aspects of healthcare data such as patients, practitioners, organizations, services, appointments, encounters, diagnostic data, and medications. Developers of healthcare applications select a subset of the resources that are required to solve their problems. However, the standard provides no way to effectively organize a subset of resources into a higher-level construct similar to software design patterns. This paper leverages the design pattern concept to extend the FHIR standard by defining meta resources that are a conceptual construct that clearly defines the involved resources and their interactions into one unified artifact. To illustrate the concepts of this paper, we use a mobile health application for medication reconciliation that integrates information from multiple electronic health records. We leverage FHIR extension mechanisms such as profiles and Bundle resources to integrate the meta resource into the resource contextualization layer of the FHIR standard.
Medications are a large and growing component of the prescriber’s armamentarium and are the first line treatment for 88% of chronic diseases. The percentage of patients taking multiple prescription medications is also increasing. According to the most recent data (2011-2014) from the Centers for Disease Control and Prevention (CDC), 40.7% of seniors (65 years or older) and 10.9% of the total population were taking five (5) or more prescription medications within the past 30 days. For seniors, the 40.7% represents almost a three-fold increase from the period of 1988-1994 (13.8%). Because a patient’s medication regimen is the basis for many treatment decisions, it is extremely important that medication lists are accurate in order to maximize therapeutic impact and prevent potentially life-threatening patient safety events. This paper presents our work on a mobile health (mHealth) application for medication reconciliation that can: retrieve medications from multiple electronic health records, personal health records, and other health information technology systems; combine and reconcile medication into a medication list that identifies potential conflicts between the same and/or different medications; develop an adaptive multi-use algorithm for medication reconciliation for multiple medications pulled from different sources; and, provide a Fast Healthcare Interoperability Resources FHIR-based extensible software solution for medication reconciliation which can seamlessly include new medication sources and algorithm modifications. Keywords-Medication reconciliation; FHIR; Mobile health;
OBJECTIVES:Persons with multiple sclerosis (MS) can face a number of potential healthcare-related barriers, for which mobile health (mHealth) technology can be potentially beneficial. This review aimed to understand the frequency, current uses, and potential barriers with mHealth usage among persons with MS.METHODS:A query string was used to identify articles on PubMed, MEDLINE, CINAHL, and IEEE Xplore that were published in English between January 2010 and December 2019. Abstracts were reviewed and selected based on a priori inclusion and exclusion criteria. Fifty-nine peer-reviewed research studies related to the study questions are summarized.RESULTS:The majority of persons with MS were reported as using smartphones, although rates of mHealth utilization varied widely. mHealth usage was grouped into 3 broad categories: (1) disability and symptom measurement; (2) interventions and symptom management; and (3) tracking and promoting adherence. While there have been an increasing number of mHealth options, certain limitations associated with MS (eg, poor dexterity, memory problems) may affect usage, although including persons with MS in the design process can address some of these issues.DISCUSSION:Given the increased attention to mHealth in this population and the current need for telehealth and at home devices, it is important that persons with MS and healthcare providers are involved in the development of new mHealth tools to ensure that the end product meets their needs. Considerations for addressing the potential mHealth use barriers in persons with MS are discussed.
A major challenge in the healthcare industry is the selective availability, at a fine-grained level of detail, of a patient's data to the various clinicians, nurses, specialists, home health aides, family members, etc. where the decision of who can see which information at which times is controlled by a patient. The information includes: contact and demographics, current conditions, medications, test results, past medical history, history of substance abuse and treatment, mental health information, sexual health information, records relating to domestic violence, reproductive health records, and genetic information. To control sensitivity, multi-level security (MLS) using lattice-based access control (LBAC) can be used to extend the traditional linear sensitivity levels of mandatory access control with the ability to define a complex lattice of sensitivity categorizations suitable for the wide variety of the aforementioned information types. This paper applies and extends our prior work on multi-level security for healthcare using LBAC by exploring alternative approaches to integrate this approach into the Fast Healthcare Interoperability Resources (FHIR) standard at the specification level of the standard.
Controlling access to sensitive personal information is a primary concern in healthcare. Regardless of whether access control policies are determined by patients, healthcare professionals, institutions, legal and regulatory authorities, or some combination of these, assuring the strict enforcement of policies across all systems that store personal health information is the overriding, essential goal of any healthcare security solution. While a comprehensive healthcare security architecture may need to impose specific controls on individual data items, most access control decisions will be based on sensitivity levels automatically assigned to information classes by a “sensitivity profile,” combined with the authorization level of the user. This article proposes the use of multi-level security, defined by lattice-based sensitivity profiles, to ensure compliance with data access restrictions between systems. This security approach accommodates the complexities needed for health data access and benefits from existing, proven tools that are used for defense and national security applications.
FHIR standard is designed to enable interoperability and integration with the newest and adopted technologies by the industry. This chapter presents a number of blueprints for the design and development of FHIR servers that enable the integration between HIT systems with m-health applications via FHIR. Each blueprint is based on the location that FHIR servers can be placed with respect to the components of the m-health application (UI, API, server) or a HIT system in order to define and design the necessary infrastructure to facilitate the exchange of information via FHIR. To demonstrate the feasibility of the work, this chapter utilizes the Connecticut concussion tracker (CT2) m-health application as a proof-of-concept prototype that fully illustrates the blueprints of the design and development steps that are involved. The blueprints can be applied to any m-health application and are informative and instructional for medical stakeholders, researchers, and developers.
Objective: To illustrate the need for wider implementation of the CancelRx message by quantifying and characterizing the inappropriate usage of new electronic prescription (NewRx) messages for communicating discontinuation instructions to pharmacies. Materials and Methods: A retrospective analysis on a nationally representative random sample of 1 400 000 NewRx messages transmitted over 7 days to identify e-prescriptions containing medication discontinuation instructions in NewRx text fields. A vocabulary of search terms signifying cancellation instructions was formulated and then iteratively refined. True-positives were subsequently identified programmatically and through manual reviews. Two independent reviewers identified incidences in which these instructions were associated with high-alert or look-alike-sound-like (LASA) medications. Results: We identified 9735 (0.7% of the total) NewRx messages containing prescription cancellation instructions with 78.5% observed in the Notes field; 35.3% of identified NewRxs were associated with high-alert or LASA medications. The most prevalent cancellation instruction types were medication strength or dosage changes (39.3%) and alternative therapy replacement orders (39.0%). Discussion: While the incidence of prescribers using the NewRx to transmit cancellation instructions was low, their transmission in NewRx fields not intended to accommodate such information can produce significant potential patient safety concerns, such as duplicate or inaccurate therapies. These findings reveal the need for wider industry adoption of the CancelRx message by electronic health record (EHR) and pharmacy systems, along with clearer guidance and improved end-user training, particularly as states increasingly mandate electronic prescribing of controlled substances. Conclusion: Encouraging the use of CancelRx and reducing the misuse of NewRx fields would reduce workflow disruptions and unnecessary risks to patient safety.
In health care, patient information of interest to health providers, researchers, public health researchers, insurers, patients, etc., is stored in different locations via electronic media and/ or hard-copy formats. All potential users need electronic access to health information technology systems such as: electronic health records, personal health records, patient portals, and ancillary systems such as imaging, laboratory, pharmacy, etc. Controlling access to information from multiple systems requires granularity levels of privileges ranging from one patient to a cohort to an entire population. In this paper, we present a viewpoint of the state of secure digital health care in the United States, focusing on the resources that need to be protected as dictated by legal entities and regulations, the available approaches in the present state-of-the art, and, the potential needs for the future of security for digital health care. By utilizing a real world scenario, the authors explore the limitations of health information exchange in the United States, and present one possible architecture for secure digital health care that builds on existing technology alternatives.
In order to secure mobile devices, there has been movement to trust negotiation where two entities are able to establish a measure of mutual trust, even if no prior contact between either entity has existed in the past. This chapter explores adaptive trust negotiation in a mobile environment as a means to dynamically adjust security parameters based on the level of trust established during the negotiation process thereby enhancing mobile security. To accomplish this, the chapter proposes a trust profile that contains a proof of history of successful access to sensitive data to facilitate identification and authentication for adaptive trust negotiation. The trust profile consists of a set of X.509 identity and attribute certificates, where a certificate is added whenever a user via a mobile application makes a successful attempt to request data from a server where no relationship between the user and server has previously existed as a result of trust negotiation. Our approach allows the user to collect an ever-growing amount of profile data for future adaptive trust negotiation.