Using participatory action research to develop a new self-management program: Results from the design stage of Managing My MS My Way.

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 interviews (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. Fatigue 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 interventional 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.

Establishing the Test-Retest Reliability and Minimal Detectable Change of the Multiple Sclerosis Resiliency Scale.

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.

Experiences with Cyclical User-Centered Design for Patient and Clinician Facing Medication Reconciliation mHealth Applications.

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.

Mobile health (mHealth) usage, barriers, and technological considerations in persons with multiple sclerosis: a literature review.

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.

Sensitivity of comorbidity network analysis.

OBJECTIVES: Comorbidity network analysis (CNA) is a graph-theoretic approach to systems medicine based on associations revealed from disease co-occurrence data. Researchers have used CNA to explore epidemiological patterns, differentiate populations, characterize disorders, and more; but these techniques have not been comprehensively evaluated. Our objectives were to assess the stability of common CNA techniques. MATERIALS AND METHODS: We obtained seven co-occurrence data sets, most from previous CNAs, coded using several ontologies. We constructed comorbidity networks under various modeling procedures and calculated summary statistics and centrality rankings. We used regression, ordination, and rank correlation to assess these properties' sensitivity to the source of data and construction parameters. RESULTS: Most summary statistics were robust to variation in link determination but somewhere sensitive to the association measure. Some more effectively than others discriminated among networks constructed from different data sets. Centrality rankings, especially among hubs, were somewhat sensitive to link determination and highly sensitive to ontology. As multivariate models incorporated additional effects, comorbid associations among low-prevalence disorders weakened while those between high-prevalence disorders shifted negative. DISCUSSION: Pairwise CNA techniques are generally robust, but some analyses are highly sensitive to certain parameters. Multivariate approaches expose additional conceptual and technical limitations to the usual pairwise approach. CONCLUSION: We conclude with a set of recommendations we believe will help CNA researchers improve the robustness of results and the potential of follow-up research.

Analysis of medication therapy discontinuation orders in new electronic prescriptions and opportunities for implementing CancelRx.

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.

Commentary: The time is now: academia and opportunities in health informatics and e-health.

Recent health care reform and policy initiatives have had a focus on health information technology (HIT). At the same time, academic centers are expanding biomedical informatics programs. Yet, it is disheartening that much of the direction and dialogue are coming from those with business, political, or advocacy interests, while those in academia who might provide valuable insights are not as visible within this debate. Some major academic health centers have strong health or biomedical informatics programs that incorporate community-academia partnerships. So why aren't more academic health care faculty members, especially at public universities, involved in state or national HIT strategic policy initiatives or governance bodies? Plausible reasons are posited, and examples for greater interdisciplinary faculty member involvement at the local/state or regional levels are suggested.

Secure, obligated and coordinated collaboration in health care for the patient-centered medical home.

In the patient-centered medical home, PCMH, patient care is overseen by a primary care physician leading a team of health care providers, who collaborate to optimize treatment. To facilitate interactions in PCMH, secure collaboration will be needed to: control access to information; dictate who can do what when; and promote sharing and concurrent access. This contrasts approaches such as the National Institute of Standard and Technology (NIST) role-based access control (RBAC), where the emphasis is on controlling access and separating responsibilities. This paper investigates secure collaboration within an application such as PCMH, through: a futuristic scenario for patient care; proposed collaboration extensions to the NIST RBAC standard with a fine-grained obligated mechanism and workflow; and a prototype of PCMH via the Google Wave real-time collaboration platform.

A new way to integrate clinically relevant technology into small-group teaching.

Medical educators need to teach learners to efficiently access the best available evidence at the point of care and apply it in a patient-centered manner. As information becomes more readily available via the Internet and handheld computers, strategies to use these tools as part of the educational process become more important. New teaching skills are needed when attempting to seamlessly introduce technology into small-group settings in the midst of blending old and new teaching methods. The authors' development of a conceptual model known as "e-microskills" at the University of Connecticut School of Medicine in 2002 has facilitated the smooth integration of technology into teaching. This model's cornerstone is direct empowerment of learners during small-group sessions to perform observed searches for the best medical evidence on the Internet and with handheld computer resources. This is done in the context of a mnemonic, PEARL: (1) Choose a "Preplanned search intervention"; (2) allow learners to "Execute the search," thus committing themselves; (3) "Allow learners to teach other learners" about their search process; (4) "Review the quality of evidence" for the information found; and (5) discuss "Lessons of the search." Additional features of this teaching model include ground rules for teaching with technology that optimizes teaching time by reducing anticipated obstacles. The rules add structure in an otherwise impromptu setting thus maximizing the teachable moment. While "e-microskills" are described here within the context of a third-year family medicine clerkship, they can easily be adapted to other small-group teaching settings.

Clerkship directors' perceptions of the impact of HCFA documentation guidelines.

PURPOSE: Chart notes are used to support billing codes under the evaluation and management guidelines of the Health Care Financing Administration (HCFA), in addition to serving as a record of the visit. To better understand the effect of the HCFA documentation guidelines, the authors collected data on how the guidelines affect participation by university- and community-based faculty in clinical education programs. METHOD: In 2000, the authors sent six copies of their questionnaire to the associate deans of the 125 U.S. medical schools and requested they distribute them to all core clerkship directors. The questionnaire consisted of multiple-choice and short-answer questions regarding documentation of medical visits, participation of community-based faculty, understanding of HCFA documentation guidelines, and effects on education programs. RESULTS: The response rate was about 50%. Most of the 379 clerkship directors who responded (77%) stated they were aware the HCFA documentation guidelines include specifications regarding the role medical students can play and documentation of medical visits, and 64% indicated they were concerned the guidelines would affect their educational programs. Concerns included the loss of student independence and active participation in the patient care environment (37), time constraints and the changing balance between education and service (16), loss of faculty and decreased morale (11), and decreased quality of care for patients (7). CONCLUSION: Leaders of medical education must work to modify these guidelines to protect the quality of patients' care, while maximizing students' educational opportunity and participation.