Research in the USA on COVID-19's long-term effects: measures needed to ensure black, indigenous and Latinx communities are not left behind.

The SARS-CoV-2 (COVID-19) pandemic continues to expose underlying inequities in healthcare for black, indigenous and Latinx communities in the USA. The gaps in equitable care for communities of colour transcend the diagnosis, treatment and vaccinations related to COVID-19. We are experiencing a continued gap across racial and socioeconomic lines for those who suffer prolonged effects of COVID-19, also known as 'Long COVID-19'. What we know about the treatment for Long COVID-19 so far is that it is complex, requires a multidisciplinary approach and there is still much research needed to fully understand the effects. In this paper, we discuss pragmatic considerations for including affected communities, relevant stakeholders, and leaders from communities of colour in the planning and implementation of Long COVID-19 research.

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.

What works when: mapping patient and stakeholder engagement methods along the ten-step continuum framework.

Aim: This study provides a recommended 'patient engagement translation table' that identifies evidence-based methods for meaningful patient engagement along a ten-step framework for continuous engagement. Materials & methods: We used a mixed methods research design to collect data on preferred engagement methods, including an environmental scan of available literature, interviews and focus groups with patient-centered outcomes research stakeholders to match methods with research steps and a modified Delphi process with subject matter experts to create the final translation table. Results: Evidence-based engagement methods included community partnerships, focus groups, interviews, meetings, sharing print materials, social media, storytelling, surveys and including patients as research team members. Conclusion: Our recommended patient engagement translation table is designed to assist investigators in determining appropriate engagement methods for meaningful interactions with stakeholders.

A Cross-Sectional Survey Study to Assess Prevalence and Attitudes Regarding Research Misconduct among Investigators in the Middle East.

BACKGROUND: Recent studies from Western countries indicate significant levels of questionable research practices, but similar data from low and middle-income countries are limited. Our aims were to assess the prevalence of and attitudes regarding research misconduct among researchers in several universities in the Middle East and to identify factors that might account for our findings. METHODS: We distributed an anonymous questionnaire to a convenience sample of investigators at several universities in Egypt, Lebanon, and Bahrain. Participants were asked to a) self-report their extent of research misconducts, as well as their knowledge of colleagues engaging in similar research misconducts and b) provide their extent of agreement with certain attitudes about research misconduct. We used descriptive, bivariate, and multivariate logistic regression statistics to analyze the data. RESULTS: Data from 278 participants showed a high prevalence of misconduct, as 59.4% of our respondents self-reported to committing at least one misbehaviors and 74.5% reported having knowledge of any misbehaviors among any of their colleagues. The most common type of self-report misconduct was "circumventing research ethics regulations" (50.5%) followed by "fabrication and falsification" (28.6%). A significant predictor of misconduct included a lack of "prior ethics training". CONCLUSION: Scientific misconduct represents a significant issue in several universities in the Middle East. The demonstration that a lack of "prior ethics training" was a significant predictor of misconduct should lead to educational initiatives in research integrity. Further studies are needed to confirm whether our results can be generalized to other universities in the Middle East.

Transitioning from learning healthcare systems to learning health care communities.

The learning healthcare system (LHS) model framework has three core, foundational components. These include an infrastructure for health-related data capture, care improvement targets and a supportive policy environment. Despite progress in advancing and implementing LHS approaches, low levels of participation from patients and the public have hampered the transformational potential of the LHS model. An enhanced vision of a community-engaged LHS redesign would focus on the provision of health care from the patient and community perspective to complement the healthcare system as the entity that provides the environment for care. Addressing the LHS framework implementation challenges and utilizing community levers are requisite components of a learning health care community model, version two of the LHS archetype.

Patients' attitudes and perceptions regarding research and their rights: a pilot survey study from the Middle East.

Ethical and regulatory oversight of research may be suboptimal in low- and middle-income countries. To determine patients' attitudes and perceptions toward research participation and perceptions of their rights, we recruited 202 participants from hospitals in Egypt, Lebanon, Saudi Arabia and Sudan and asked them to complete a questionnaire assessing attitudes and perceptions. Around 20% believed that doctors sometimes perform research on patients without their knowledge and 35% believed that if participants withdrew from the research they would not receive good medical care. Over 85% believed that they should have rights regarding confidentiality of data, free medical care if injured during the research and asking questions. Almost half believed they have a right to withdraw without penalty and around 75% believed they could make complaints without fear of harm. Those who were illiterate or unemployed were less likely to appreciate their rights compared with their counterparts.

Enhancing Research Ethics Review Systems in Egypt: The Focus of an International Training Program Informed by an Ecological Developmental Approach to Enhancing Research Ethics Capacity.

Recently, training programs in research ethics have been established to enhance individual and institutional capacity in research ethics in the developing world. However, commentators have expressed concern that the efforts of these training programs have placed 'too great an emphasis on guidelines and research ethics review', which will have limited effect on ensuring ethical conduct in research. What is needed instead is a culture of ethical conduct supported by national and institutional commitment to ethical practices that are reinforced by upstream enabling conditions (strong civil society, public accountability, and trust in basic transactional processes), which are in turn influenced by developmental conditions (basic freedoms of political freedoms, economic facilities, social opportunities, transparency guarantees, and protective security). Examining this more inclusive understanding of the determinants of ethical conduct enhances at once both an appreciation of the limitations of current efforts of training programs in research ethics and an understanding of what additional training elements are needed to enable trainees to facilitate national and institutional policy changes that enhance research practices. We apply this developmental model to a training program focused in Egypt to describe examples of such additional training activities.

Enhancing research ethics capacity in the Middle East: experience and challenges of a Fogarty-sponsored training program.

We describe the research ethics capacity needs of the countries from the Middle East region. Against this background, we relate the experience of an international training program focused on providing long-term training in research ethics to individuals from low and middle-income countries in the Middle East area. We describe our pedagogical approach to training, program changes to address challenges faced, and accomplishments of trainees. Many former trainees developed research ethics curricula in their home institutions, established or enhanced their institutions' research ethics committees, provided leadership to national research ethics systems, and conducted research in research ethics. Based on our analysis, we make recommendations for how trainees can further address current regional research ethics needs in the Middle East and conduct future research. This paper is part of a collection of papers analyzing the Fogarty International Center's International Research Ethics Education and Curriculum Development program.