Women's Health Information-Seeking Experiences and Preferences for Health Communications on FDA-Regulated Products: A Qualitative Study in Urban Area.

A key part of any effort to ensure informed health care decision-making among the public is access to reliable and relevant health-related information. We conducted focus groups with women from three generations across the Baltimore-Washington metropolitan area to explore their information-seeking motivations, perceptions, challenges, and preferences regarding three FDA-regulated products: drugs, vaccines, and medical devices. The youngest generation discussed seeking health information for their children; the other two sought information for their own needs. All participants noted that finding health information appropriate to their reading level was a challenge, as was identifying reliable sources of information. All generations identified in-person and live interactions as their preferred method of communication and health care providers as their preferred source for information. All three generations recognized the usefulness of websites, and the two older generations acknowledged the advantages of brochures. Our findings suggest approaches the FDA could consider to improve communications: (a) supporting in-person and live health information interactions; (b) leveraging the agency's standing with the public to highlight it as a leading source of validated health information; (c) increasing the FDA website's visibility in internet searches and making its navigation easier; and (d) using multi-pronged approaches and media for various audiences.

Active Duty Service Members, Primary Managers, and Administrators' Perspectives on a Novel Sleep Telehealth Management Platform in the U.S. Military Healthcare System.

INTRODUCTION: Sleep disorders are common in the military, and there is a gross shortage of sleep specialists in the military health system. The purposes of the present study were to (1) understand perceptions and expectations surrounding sleep telehealth approaches and (2) solicit feedback to optimize and refine a proposed novel sleep telehealth management platform. To accomplish these objectives, we investigated the perceptions, expectations, and preferences of active duty service members (ADSMs) with sleep disorders, primary care managers (PCMs), and administrative stakeholders regarding sleep telehealth management. MATERIALS AND METHODS: Using convenience sampling, we conducted five focus groups with 26 ADSMs and 11 individual interviews with PCMs from two military treatment facilities in the U.S National Capital Region and 11 individual interviews with administrative sleep stakeholders (9 military and 2 civilian). RESULTS: Active duty service members, PCMs, and administrative stakeholders provided insight regarding expectations for sleep telehealth as well as suggestions to optimize the novel sleep telehealth platform. In terms of outcomes, ADSMs expected sleep telehealth to improve sleep and convenience. Primary care managers expected improved sleep and other comorbidities, enhanced operational readiness, and reduced mortalities among their patients. Administrators expected increased access to care, optimized utilization of health services, realized cost savings, reduced accidents and errors, and improved military performance. In terms of the platform, for ADSMs, desired characteristics included delivery of timely clinical reports, improved patient-provider communication, and enhanced continuity of care. For PCMs and administrators,an ideal sleep telehealth solution will improve the diagnosis and triage of sleep patients, save PCM time, be easy to use, and integrate with the electronic health record system. CONCLUSION: The proposed sleep telehealth platform appealed to nearly all participants as a significant force multiplier to enhance sleep disorder management in the military. Stakeholders offered valuable recommendations to optimize the platform to ensure its successful real-world implementation.

Engaging Stakeholders to Optimize Sleep Disorders' Management in the U.S. Military: A Qualitative Analysis.

INTRODUCTION: Sleep disorders' are highly prevalent among U.S. active duty service members (ADSMs) and present well-documented challenges to military health, safety, and performance. In addition to increased need for sleep medicine services, a major barrier to effective sleep management has been a lack of alignment among patients, health providers, and economic-decision-makers. To address this gap in knowledge, the purpose of the present study was to engage diverse stakeholders vested in improving sleep disorders' management in the military. MATERIALS AND METHODS: We elicited feedback from ADSMs with sleep disorders (five focus group discussion, n = 26) and primary care managers (PCMs) (11 individual semi-structured interview) in two military treatment facilities (MTFs) in the National Capitol Region, in addition to national level military and civilian administrative stakeholders (11 individual semi-structured interview) about their experiences with sleep disorders' management in U.S. MTFs, including facilitators and barriers for reaching a definitive sleep diagnosis, convenience and effectiveness of sleep treatments, and key desired outcomes from interventions designed to address effectively sleep disorders in the U.S. military health care system (MHS). Recordings from focus groups and semi-structured interviews were transcribed verbatim and analyzed using QSR International's NVivo 12 software using inductive thematic analysis. The study was approved by Walter Reed National Military Medical Center Department of Research Programs. RESULTS: Active duty service members with sleep disorders often fail to recognize their need for professional sleep management. Whereas PCMs identified themselves as first-line providers for sleep disorders in the military, patients lacked confidence that PCMs can make accurate diagnoses and deliver effective sleep treatments. Active duty service members cited needs for expeditious treatment, educational support and care coordination, and support for obtaining sleep treatments during deployment. Challenges that PCMs identified for effective management include insufficient time during routine care visits, delays in scheduling testing procedures, and limited number of sleep specialists. Primary care managers suggested offering evidence-based telehealth tools and enhanced care coordination between PCMs and specialists; standardized medical education, materials, and tools; patient preparation before appointments; self-administered patient education; and including behavioral sleep specialists as part of the sleep management team. For administrative stakeholders, key outcomes of enhanced sleep management included (1) improved resource allocation and cost savings, and (2) improved ADSM safety, productivity, and combat effectiveness. CONCLUSION: Current military sleep management practices are neither satisfactory nor maximally effective. Our findings suggest that solving the military sleep problem will require sustained effort and ongoing collaboration from ADSM patients, providers, and health systems leaders. Important potential roles for telehealth and technology were identified. Future research should seek to enhance implementation of sleep management best practices to improve outcomes for patients, providers, MHS, and the military as a whole.

Rebleeding after hemoclip versus argon plasma coagulation for gastrointestinal angiodysplasias: a retrospective multicenter study.

BACKGROUND: Hemoclips are utilized for treating bleeding gastrointestinal angiodysplastic lesions (GIADs); however, the supporting evidence is limited. AIMS: Our aim is to evaluate the efficacy of hemoclips in preventing bleeding secondary to GIADs compared to argon plasma coagulation (APC). METHODS: This retrospective study included patients with bleeding gastric, small bowel or colonic GIADs that were endoscopically treated between January 2009 and November 2016. Patients that received hemoclips as monotherapy or in combination were compared to a randomly selected similar number of patients treated with APC. RESULTS: We included 157 patients that underwent APC and 141 who received hemoclips. During a median follow-up of 17 months, those with hemoclips had a 32.6% rebleeding vs. 46.5% in the APC group (P = 0.017). On multivariate regression analysis, use of hemoclips was not a significant predictor of rebleeding when compared to APC; hemoclips monotherapy (HR, 0.92; 95% CI, 0.54-1.59) and hemoclips combination (HR, 0.65; 95% CI, 0.41-1.01). When the multivariate analysis was restricted to subjects that resumed antithrombotics after endoscopy, rebleeding risk was lower when hemoclips were used in combination (HR, 0.46; 95% CI, 0.25-0.84) compared to APC. We noted a similar effect in the antithrombotic subgroup even after propensity score matching (HR, 0.51; 95% CI, 0.27-0.95). CONCLUSION: Treatment modality was not a significant predictor of rebleeding when studied for the entire population. However, the risk of rebleeding was lower with hemoclips combination therapy compared to APC in patients that resumed antithrombotic therapy, suggesting a potential role for a combined approach in this subgroup of patients.

Use of a Qualitative Story Deck to Create Scenarios and Uncover Factors Associated with African American Participation in Genomics Research.

To gain a complex understanding of willingness to participate in genomics research among African Americans, we developed a technique specifically suited to studying decision making in a relaxed social setting. The "Qualitative Story Deck," (QSD) is a gamified, structured elicitation technique that allows for the spontaneous creation of scenarios with variable attributes. We used the QSD to create research scenarios that varied on four details (race/ethnicity of the researcher; research goal; biospecimen requested; and institutional affiliation). Participants created scenarios by randomly choosing cards from these categories and provided: (1) a judgement about their willingness to participate in the research project represented; and (2) their thought process in reaching a decision. The QSD has applicability to topics involving decision making or in cases where it would be beneficial to provide vignettes with alternate attributes. Additional benefits include: rapid establishment of rapport and engagement and the facilitation of discussion of little known or sensitive topics.

Food allergy treatment value: Child caregiver and patient perspectives.

BACKGROUND: Food allergy is a major health problem that significantly impacts quality of life (QoL). There is growing focus to evaluate food allergy-related QoL and treatment options' value beyond the clinical effectiveness perspective by engaging patients and caregivers. We aimed to identify and prioritize outcomes important to food allergy parents of children and patients allergic to milk, egg, and/or peanut, to guide comparative effectiveness research (CER) that focuses on evaluating food allergy treatment decisions. METHODS: We conducted a modified 3-round Delphi study to identify and derive consensus on priority treatment outcomes for parents of children and adult patients with diagnosed allergies to at least one of three major allergenic foods (milk, egg, and peanut) from across the United States. RESULTS: Round 1 yielded 44 statements for round 2, and 39 statements reached the agreement level for round 3 ranking. Statements were organized under 4 sections: 1) food allergy problems, 2) treatment experiences, 3) important treatment outcomes, and 4) value of different treatment options. CONCLUSION: Food allergy parents and patients face several social, psychological, medical, healthcare, financial, food selection, and awareness challenges. The areas of consensus on important treatment outcomes revealed shared priority for reducing the risk of potentially fatal allergic reactions and having reliable treatments. The most valued treatment options reflect hope for permanent cure and fear of serious allergic reactions.

Patient Centeredness in Hepatitis C Direct-Acting Antiviral Treatment Delivery to People Who Inject Drugs: A Scoping Review.

BACKGROUND AND OBJECTIVE: Patient-centered care (PCC) is crucial for value-based care. We aimed to assess PCC dimensions addressed in hepatitis C virus direct-acting antiviral treatment delivery to people who inject drugs. METHODS: We conducted a scoping review to identify the studies that described hepatitis C virus treatment delivery to people who inject drugs in the direct-acting antiviral treatment era. We analyzed the included studies against eight PCC dimensions: (1) access to care; (2) coordination and integration of care; (3) continuity and translation; (4) physical comfort; (5) information, education, and communication; (6) emotional support; (7) involvement of family and friends; and (8) respect for individual patient preferences, perceived needs, and values. Additionally, we assessed the use of patient-centered terminology and the recognition of PCC importance and its relevance to treatment outcomes. RESULTS: None of the identified 36 studies addressed all PCC dimensions (highest seven, lowest two). Our findings revealed that PCC dimensions are prioritized differently and addressed using different approaches and strategies. Studies that used PCC terminology referred to personalized activities, which does not imply comprehensive PCC. About one-third of the studies acknowledged the importance of patient centeredness and two-thirds recognized its relevance to treatment outcomes. CONCLUSIONS: Our findings suggest more engagement of people who inject drugs and comprehensive involvement of their families and friends in hepatitis C virus treatment journey, decisions, and outcomes. The recognition of PCC importance and its relevance to treatment outcomes in the analyzed studies emphasizes the need for more patient-centered hepatitis C virus treatment for people who inject drugs.

Pharmapreneur - Defining a Framework for Entrepreneurship in Pharmacy Education.

Objective. To determine the role of entrepreneurism within the broader missions of schools of pharmacy and develop an educational framework to produce pharmacist entrepreneurs. Methods. Following a systematic review and six semi-structured interviews, a three-round Delphi process was conducted with an expert panel comprised of successful entrepreneurs, pharmacy faculty members and administrators, students, and community members. Participants were asked about the role of entrepreneurship in a pharmacy school's mission, how they would define a pharmacist entrepreneur, and to identify the knowledge, skills, and attitudes (KSAs) expected to be successful as a pharmacist entrepreneur. A model for entrepreneur education was also developed in accordance with Bloom's taxonomy. Participant agreement and rankings were reported. Results. Based on the semi-structured interviews and the results from the Delphi process, the following framework for a pharmacist entrepreneur was proposed along with a list of KSAs: identifies, creates, and pursues new opportunities; successfully implements new ideas into practice; is willing to take risks; fills unmet needs; creates new value through innovation; is responsive to change; makes sacrifices; includes social and intrapreneurship; leverages existing knowledge, skills, and resources; goes beyond traditional roles for pharmacists; and improves patient care. Recommendations for entrepreneurship instruction, guided by Bloom's taxonomy of cognitive processes, were created. Conclusion. According to our expert panel, a pharmacist entrepreneur combines several characteristics identified with a more traditional entrepreneur construct with the characteristics of an individual devoted to achieving outcomes beyond one's personal gain. Additional research to inform implementation and assessment of entrepreneurship within pharmacy curricula would provide more specific guidance for instructional design and accreditation evaluations.

"I'm a Little More Trusting": Components of Trustworthiness in the Decision to Participate in Genomics Research for African Americans.

AIMS: This study sought to explore the decision to participate in genomics research for African American individuals. Our overall goal was to explore (1) the attributes that significantly contribute to willingness to participate in genomics research; (2) how these attributes are interpreted (what is their meaning?); (3) how trustworthiness is estimated in the decision to participate in research (i.e., what are the symbolic representations or heuristics of trustworthiness in decision-making?); and (4) how participants see factors to counterweigh each other. METHODS: We sought a methodology that would afford exploration of the compensatory nature of decision-making where some choice attributes may be weighed differently than others as well as the use of heuristics (shortcuts to estimate key concepts in the mentally taxing task of decision-making) for concepts such as trustworthiness. We used a qualitative story deck to create hypothetical research scenarios with variable attributes (i.e., researcher race/ethnicity; institutional affiliation; research goal; and biospecimen requested) to determine how individuals find and interpret information to make decisions about research participation. These semi-structured interviews (n = 82) were conducted in African American barbershops in Baltimore City and Prince George's County, Maryland. RESULTS: Quantitative and qualitative analysis was completed. Findings include that, even in the absence of interpersonal connection, trustworthiness can be communicated through multiple factors, such as (1) shared values with researchers and (2) familiarity. Conversely, (1) ambiguity, especially regarding the use of biospecimens, (2) negative reputations, and (3) perceptions of "hidden agendas" were associated with a lower willingness to participate. However, the alignment of participant and research goals was weighed more heavily in decisions than other factors. CONCLUSION: This study finds that negatively assessed characteristics in research design do not result in automatic rejections of participation. Negative assessments can be mitigated by emphasizing the multiple factors that communicate trustworthiness in the consent process, which may improve rates of research participation.

A model for Southern Mediterranean research institute self-assessment: a SWOT analysis-based approach to promote capacity building at Theodor Bilharz Research Institute in Cairo (Egypt).

BACKGROUND AND STUDY AIMS: THEBERA is a project funded by the European Union (EU), as an ERA-WIDE FP7 project, aiming to strengthen the Theodor Bilharz Research Institute (TBRI) capacities. MATERIALS AND METHODS: A SWOT (strength/weakness/opportunities/threats) analysis of human, structural and organisational existing resources was performed in light of an extensive analysis of liver disease research and clinical management in Egypt, for a full understanding of TBRI needs. RESULTS: Strength and weakness features were identified and analysed, so were actions to be implemented and targets to be accomplished, to develop a business plan gathering the required critical mass (political, scientific, industrial, social) to select investment priorities, to sacrifice non-strategic areas of research, to promote national and international connections and industrial innovations, to update diagnostics and research device technologies and clinical management processes at European levels, to implement fundraising activities, to organise and properly assess training activities for young researchers, physicians, nurses, and technicians. CONCLUSIONS: Research institute self assessment is a priority need for sustainable capacity building and for future build-up of a competent health care research institute. Sustainable capacity building strategies must be designed on needs assessment, involving salient requirements: clear strategy, leverage of administrative capacities, industrial support and connections, systematised training programmes and enhancement of mobility of health care staff implemented within ill-defined boundaries and continuously re-evaluated with multiple feedback loops in order to build a complex, adaptable and reliable system based on value.