Bridging Gaps in Shared Decision-Making for Anxiety Disorders: A Commentary on Villena et al.

This commentary reflects on the recent study by Villena et al., which addresses the need for enhanced shared decision-making (SDM) for individuals with anxiety disorders. As a psychiatrist with expertise in anxiety management, I commend the study's emphasis on patient involvement and its alignment with real-world clinical challenges. The findings, particularly regarding patients' preferences for psychological interventions and the current trend towards pharmacological treatments, highlight the need to better align treatment approaches with evidence-based guidelines. Additionally, the study underscores the importance of psychoeducation and active coping strategies like exposure techniques. These insights offer valuable contributions towards improving patient-centred care and SDM in anxiety disorder treatment.

Experiences of people with unexplained hearing concerns seeking hearing healthcare in the United States.

OBJECTIVE: Up to 10% of adults seeking hearing healthcare for significant hearing concerns have diagnostic test results that indicate normal hearing. Knowledge of the interactions between patients with unexplained hearing concerns and hearing healthcare providers is minimal. In this study, we explored what themes emerged when individuals with unexplained hearing concerns discuss their experiences seeking hearing healthcare. DESIGN: We employed a prospective, cross-sectional qualitative design with semi-structured interviews. STUDY SAMPLE: Fifteen adults who had sought professional hearing evaluations in the United States due to hearing concerns but had audiological testing that indicated hearing within normal limits, and no other medical explanation for their hearing concerns participated in the study. Saturation of themes was reached by Interview #2, suggesting sufficient sampling. RESULTS: Thematic analysis revealed 3 themes from the interviews: (1) dismissive healthcare providers, (2) misalignment of patient concerns and assessment protocols, and (3) doctor shopping. CONCLUSION: These findings highlight the need for improved care for patients with unexplained hearing concerns. Clinicians could help improve care provision for patients with unexplained hearing concerns, despite a lack of professional guidance on diagnostic tests or treatment recommendations, by soliciting, listening to, and trusting patient experiences as they seek support for their hearing concerns.

Development of MyREADY Transition BBD Mobile App, a Health Intervention Technology Platform, to Improve Care Transition for Youth With Brain-Based Disabilities: User-Centered Design Approach.

BACKGROUND: Transition from pediatric to adult health care varies and is resource intensive. Patient-centered health information technology (HIT) interventions are increasingly being developed in partnership with patients. OBJECTIVE: This study aims to develop an internet-based mobile app intervention for patients with brain-based disabilities to improve transition in care readiness. METHODS: The app was designed for patients aged 15 to 17 years with brain-based disabilities having the ability to use a mobile app. A multidisciplinary team, an industry partner, and a patient and family advisory council was assembled. We hypothesized that existing tools could be migrated into the app to address education, empowerment, and navigation. We used cognitive learning theory to support chapters targeting transition in care skill sets. We used the agile iterative methodology to engage stakeholders. RESULTS: We developed a novel MyREADY Transition HIT platform. An electronic mentor supported cognitive learning with messaging, quizzes, rewards, and videos. We used gaming to guide navigation through a fictitious health care city. Adapting existing tools was achieved by the patient and family advisory council requesting personalization. Our iterative design required time-consuming back-end technology management. Developing the platform took 24 months instead of our grant-approved 12 months, impacting the onset of the planned trial within the allotted budget. CONCLUSIONS: A novel patient-centered HIT platform to improve health care transition was successfully developed in partnership with patients and industry. Careful resource management was needed to achieve timely delivery of the end product, flagging the cautious planning required to deliver HIT tools in time for the much-needed trials informing their clinical application. TRIAL REGISTRATION: ClinicalTrials.gov NCT03852550; https://clinicaltrials.gov/study/NCT03852550.

Walking the Talk: "Reflexivity" to Advance Integration of Patient Reported Outcomes for Cancer Care Screening.

In this commentary, we propose the use of video-reflexive ethnography (VRE) as a means to support integration of patient-reported outcomes (PROs) in cancer care screening. As for any policy or intervention, the optimization of PROs depends on moving beyond their mere formal introduction, and depends on the integration of PROs in the everyday practice contexts of health care professionals (HPEs). The use of VRE allows for video-playback sessions among oncology professionals to support team-based learning and practice-change grounded in "reflexivity." Through a review of previous methods used to support organizational change in healthcare settings (e.g., policies, quality improvement initiatives, simulation sessions), we present some unsung advantages of VRE that can be applied to a complex integrated setting, such as cancer care. As opposed to other methods to create change, VRE does not dictate new measures, but rather supports "bottom-up" provider-initiated changes to health care practices and contexts, grounded in collaborative day-to-day practice. We argue that VRE optimizes PROs in cancer care by facilitating their effective and sustainable integration, to promote improved patient care.

Family-Led Coaching of Patients During Weaning From Sedation and Mechanical Ventilation in the ICU.

BACKGROUND: ICU patients are weaned from sedation and mechanical ventilation through spontaneous awakening trials (SATs) and spontaneous breathing trials (SBTs). Weaning can be distressing for patients and their families. Family-led coaching could reassure patients and reduce stress for families by engaging them in patient care. This study developed and piloted a family-led coaching tool to support patients undergoing SATs/SBTs. METHODS: Patient and family member dyads were recruited from 2 medical-surgical ICUs in Calgary, Canada (February 3-August 1, 2023). Surveys were administered to collect family (1) demographics, (2) anxiety and satisfaction with ICU care, (3) feedback on the tool, and (4) attitudes about family presence during SATs/SBTs (also collected from clinicians). Tool feasibility was determined by calculating the proportions of (1) eligible patients who were recommended for participation in the study by clinicians and (2) families approached who consented to participate in the study. RESULTS: One thousand one hundred fifty patients were admitted to the study ICUs during the study period of which 819 received mechanical ventilation, and 42 were recommended by bedside clinicians for participation in the study. Twenty-five dyads were approached, 21 dyads consented to participate, and one withdrew consent before data collection. Of the enrolled families, 12 (60%) reported the coaching tool to be useful, and 5 (25%) recommended minor suggestions such as "shortening" the tool. Fourteen (70%) families reported positive experiences (through open-ended feedback) with being present for the SAT/SBT. State-Trait Anxiety Inventory (Y1) scores (scale range 20-80 points) significantly decreased in families from the first (pre coaching) to the second (post coaching) measures (mean decrease 8.2 points, SD 10.3, P = .001). All clinicians indicated they were comfortable with family presence and/or coaching during SATs/SBTs. CONCLUSION: Family-led coaching of patients during SATs/SBTs appears to be feasible, favorably perceived by families and clinicians, and potentially associated with lower family anxiety.

Development and Implementation of a Family Presence Facilitator Curriculum for Interprofessional Use in Pediatric Medical Resuscitations.

Introduction: Family presence during pediatric medical resuscitation has myriad benefits. However, there is significant heterogeneity in provider acceptance and implementation of the family support role. We designed this curriculum to teach all members of the health care team best practices in the Family Presence Facilitator (FPF) role during pediatric medical resuscitations. Methods: We applied Kern's six-step approach to develop an FPF curriculum comprising didactic and interactive elements, along with training for simulated participants. We implemented the curriculum through (a) live sessions (30-minute didactic or 90-minute workshop) for learners; (b) a 20-minute asynchronous version of the didactic curriculum for self-directed learning; and (c) a 1-hour, monthly, in situ simulation curriculum in a pediatric emergency department setting. Curriculum evaluation surveys queried self-reported engagement, satisfaction, relevance, confidence, commitment, knowledge, skills, and attitudes in a retrospective pre/post format. Results: We collected data from 153 learners, including attendings, fellows, residents, advanced practice providers, medical students, and child life specialists, between October 2022 and September 2023. Only 22% of participants had received similar prior training. One hundred percent of learners found the curriculum enjoyable and engaging; learners also agreed the curriculum improved their knowledge and skills in providing empathetic and respectful communication (99%); nonspeculative, clear information (100%); and nonverbal support (99%). Of respondents, 100% believed the curriculum would improve the patient care experience. Discussion: Facilitating family presence during pediatric medical resuscitations is a crucial skill. Our curriculum improves self-reported confidence, knowledge, and skills among interprofessional learners. Next steps include expanding this curriculum beyond the pediatric setting.

The Role of Wearable Devices in Chronic Disease Monitoring and Patient Care: A Comprehensive Review.

Wearable health devices are becoming vital in chronic disease management because they offer real-time monitoring and personalized care. This review explores their effectiveness and challenges across medical fields, including cardiology, respiratory health, neurology, endocrinology, orthopedics, oncology, and mental health. A thorough literature search identified studies focusing on wearable devices' impact on patient outcomes. In cardiology, wearables have proven effective for monitoring hypertension, detecting arrhythmias, and aiding cardiac rehabilitation. In respiratory health, these devices enhance asthma management and continuous monitoring of critical parameters. Neurological applications include seizure detection and Parkinson's disease management, with wearables showing promising results in improving patient outcomes. In endocrinology, wearable technology advances thyroid dysfunction monitoring, fertility tracking, and diabetes management. Orthopedic applications include improved postsurgical recovery and rehabilitation, while wearables help in early complication detection in oncology. Mental health benefits include anxiety detection, post-traumatic stress disorder management, and stress reduction through wearable biofeedback. In conclusion, wearable health devices offer transformative potential for managing chronic illnesses by enhancing real-time monitoring and patient engagement. Despite significant improvements in adherence and outcomes, challenges with data accuracy and privacy persist. However, with ongoing innovation and collaboration, we can all be part of the solution to maximize the benefits of wearable technologies in healthcare.

Developing the IDCaRe team: an integrated and culturally-affirming approach to improving health engagement for HIV-positive veterans.

BACKGROUND: Veterans Health Administration (VHA) has been at the forefront of offering integrated and patient-centered care to address the complex needs of more than 30,000 Veterans with HIV in the United States of America. These Veterans present with diverse cultural identities, personal values, and goals pertinent to their care, and they are often managing multiple comorbid chronic conditions, mental health diagnoses, and psychosocial stressors alongside HIV. The quality of their care has often been affected by stigma, minority stress, and the quality of the patient-provider relationship and associated collaborations over treatment approaches and goals, which has a direct effect on outcomes. OBJECTIVE: At San Francisco VA Health Care System, the Infectious Disease Care and Resilience (IDCaRe) team was established to improve outcomes for Veterans with acute needs or persistent difficulties in care delivery and efficacy. METHOD: A five-step model to address complex needs in HIV care was adapted from existing literature and evidence base, combined with a culturally-aligned, interdisciplinary care orientation. This model was implemented with patients determined to be at high-risk for poor health engagement. A representative composite case study demonstrates the process. RESULTS: Three Veterans underwent the intervention with results presented. Lessons learned and future discussions are also discussed. CONCLUSION: The IDCaRe model has promise as an integrated, patient-centered, behaviorally-grounded intervention for improving HIV-related care outcomes for Veterans with complex needs.

Evaluation of chiropractic students' knowledge and attitudes following pain interventions: A randomized educational trial at 2 institutions.

OBJECTIVE: To examine chiropractic students' attitudes regarding knowledge of pain neuroscience, chronic pain, and patient-centered care before and after educational interventions. Secondarily, this study aimed to compare measures of these skills between cohorts at different timepoints throughout training programs. METHODS: Using stratified randomization, 281 Year 3 chiropractic students at 2 institutions were allocated into 1 of 3 educational interventions and served as active-control comparison groups: pain neuroscience education, chronic pain education, or patient-centered care. Participants completed validated surveys regarding their experience with the education interventions immediately pre- and post-lecture and 12 weeks after completion. For further comparison, surveys were also completed by 160 Year 1 students and 118 Year 2 students at 1 of the institutions. Independent sample t tests and 1-way analysis of variance were used for data analysis. RESULTS: All Year 3 lecture groups showed immediate improvements (pain neuroscience education: 3.99 + 3.09/100, p = .18 [95% CI: 10.10 to -1.77]; chronic pain education: 0.42 + 0.74/7, p = .02 [95% CI: 0.72 to 0.07]; patient-centered care: 0.25 + 0.12/6, p = .05 [95% CI: 0.12-0.51]), but these were not sustained at the 12-week follow-up (pain neuroscience education: -6.25 + 4.36/100, p = .15 [95% CI: 14.93 to -2.42]; chronic pain education: 0.33 + 0.16/7, p = .19 [95% CI, 0.66 to 0.01]; patient-centered care: 0.13 + 0.13/6, p = .30 [95% CI: 0.41 to -0.13]). Compared to active controls, only the patient-centered care group showed an immediate statistically significant difference. CONCLUSIONS: While this study found that immediate improvement in targeted competencies is possible with focused interventions, they were not sustained long term.

"We don't get that information right back to us unless it's a full-blown cancer": Challenges coordinating lung cancer screening across healthcare systems.

OBJECTIVE: To examine how lung cancer screening (LCS) is coordinated across healthcare systems, specifically Veterans Affairs (VA) and non-VA settings. DATA SOURCES AND STUDY SETTING: We conducted primary qualitative data collection in six VA medical centers with established LCS programs from November 2020 to November 2021. STUDY DESIGN AND DATA COLLECTION METHODS: Semi-structured interviews were conducted with 48 primary care providers, LCS program coordinators and directors, and pulmonologists. Thematic analysis examined spontaneously raised narratives related to initiating and coordinating LCS for Veterans screened in non-VA settings. We mapped coordination challenges to each step of the LCS care continuum. PRINCIPAL FINDINGS: While non-VA options increased access to LCS for Veterans, VA medical centers lacked clear processes for initiating LCS referrals and tracking Veterans across the LCS continuum when screening occurred in non-VA settings. The responsibility of coordinating LCS with community providers often fell to VA primary care providers rather than LCS programs. Gaps in communication and data transfer contributed to delayed evaluation of potentially cancerous nodules post-screening, raising concerns about compromised care quality when LCS was shared with non-VA settings. CONCLUSIONS: While policies expanding LCS for Veterans in non-VA settings increase access, lack of consistent processes to initiate referrals, obtain results, and promote timely downstream evaluation fragmented care and delayed evaluation of concerning nodules. These unintended consequences highlight a need to address cross-system coordination challenges. Strategies to better coordinate LCS between VA and non-VA settings are essential to achieve high quality LCS and prevent Veterans from falling through the cracks.

Reporting of patient-reported outcomes amongst randomized clinical trials in plastic surgery: a systematic review using CONSORT-PRO.

BACKGROUND: Patient-reported outcomes (PROs) are key to investigating patient perspectives in randomized controlled trials (RCTs). Standardization of PRO reporting is critical for trial generalizability and the application of findings to clinical practice. This systematic review aimed to evaluate the reporting quality of RCTs published in the top plastic surgery journals according to the consolidated standards of reporting trials (CONSORT)-PRO extension. METHODS: We completed a comprehensive search of MEDLINE, Embase, and Cochrane Central Register of Controlled Trials. All RCTs with a validated PRO endpoint published in the top 10 plastic surgery journals (based on the 2021 Web of Science Impact Factor) from 2014 to 2023 were included. Two reviewers independently extracted data and scored the included studies using the CONSORT-PRO checklist. Univariate regression was applied to assess factors associated with reporting adherence. Studies were assessed for their risk of bias using the Cochrane Risk of Bias 2.0 tool. RESULTS: A total of 88 RCTs were included. PROs were the primary endpoint in 50 (57%) and the secondary endpoint of 38 (43%) studies. Mean overall reporting adherence was poor (39% (±12) and 36% (±13) in studies with PRO as primary and secondary endpoints, respectively). The presence of industry support was significantly associated with greater adherence. CONCLUSIONS: There is low adherence to the CONSORT-PRO extension among plastic surgery RCTs published in the top 10 plastic surgery journals. We encourage journals and authors to endorse and apply the CONSORT-PRO extension. This may optimize the dissemination of clinical findings from RCTs and assist patient-centered care.

Sources and processes of social influence on health-related choices: A systematic review based on a social-interdependent choice paradigm.

BACKGROUND: Most choices in healthcare are not made in social isolation. However, current econometric models treat patients' preferences as the sole determinants of their choices. Through the lens of sociology and medical sociology theories, this paper presents a systematic literature review of identifiable social influences on patients' choices, serving as a first step in developing a social-interdependent choice paradigm. METHODS: Following the PRISMA guideline and using nine databases, we identified the individual agents or groups involved in health-related choices, the functional content through which social relationships influence patients, and the choice constructs affected by these processes. From 9036 screened articles, we selected 208 to develop an analytical framework connecting social relationships with choice constructs. RESULTS: Social influences predominantly come from family, friends, specialized physicians, and general practitioners. We decomposed the functional content of social relationships into functions and contents. Dyadic interactions and expert knowledge were prominent functions, followed by social control. Prescriptive and informational contents were prevalent, followed by instrumental and emotional ones. Expert knowledge and social norms aligned with prescriptive and informational signals, while dyadic interactions provide emotional and instrumental signals. Reference points for social norms included friends, coworkers, and patients. Social relationships primarily impact which alternatives are evaluated, followed by alternative evaluation strategies and goal selection. Distinctions between medical domains and dimensions emerged, highlighting how the medical area conditions the social influence process. CONCLUSION: This systematic review presents a comprehensive framework that elucidates the social influence process in healthcare patient decision-making. By detailing the functional content of social relationships into functions and contents and linking these components to the elements of the choice process, we created a structured approach to understanding how social relationships impact patient choices. This will facilitate the systematic integration of social relationships into econometric models of patient choice.

Designing a Nurse-Led eHealth Cardiac Rehabilitation Program: Insights From Participant Experiences and Qualitative Feedback.

BACKGROUND: This study examines the perspectives of individuals with coronary heart disease (CHD) on a nurse-led eHealth cardiac rehabilitation (NeCR) program, which included a website, tele-monitoring device, and social media chatroom. METHODS: Using a descriptive qualitative approach, semi-structured interviews were conducted with 18 participants to capture their feedback and experiences with the NeCR program. RESULTS: Participants found the NeCR program valuable in addressing gaps in cardiac rehabilitation services in China, empowering them to make behavioral changes and enhancing their social motivation. However, they also highlighted the need for a more user-friendly website, better symptom management during exercise, and stronger privacy protections in the peer networking chatroom. The study concludes that the NeCR program is feasible in providing accessible rehabilitative services at home post-discharge. Recommendations include improving the self-monitoring platform for ease of use, incorporating immediate symptom management guidance during exercise, and ensuring a secure environment for online peer support. CONCLUSIONS: These findings offer crucial insights for developing patient-centered eHealth cardiac rehabilitation services, emphasizing the importance of user-friendly design, effective symptom management features, and privacy protection in promoting participant engagement with e-platforms. TRIAL REGISTRATION: ChiCTR1800020411 (http://www.chictr.org.cn/showprojen.aspx?proj=33906).

Enhancing patient-provider encounters when proposing SDF therapy by utilizing a qualitative analysis of parental feedback.

Purpose: Silver Diamine Fluoride (SDF) is a minimally invasive option for caries arrest, part of a paradigm shift in the management of pediatric dental caries. The perspective of parents regarding the long-term pros and cons of this therapy should be understood in order to achieve optimal patient-centered care. Methods: This study used Constant comparative analysis as an analytic approach, applying the Precaution-Adoption Process Model (PAPM) as the Grounded Theory framework in the qualitative analysis of 30 parental unformatted, spontaneous comments collected at the end of a questionnaire to evaluate their satisfaction with treatment provided at a University Clinic. Results: Our analysis provided important insights about the factors that influenced the parents' decision to act and have their child receive SDF therapy, their perception of the outcomes, the necessary follow-ups after the therapy, and what impacted on their overall satisfaction with the completed procedure. Both positive and negative themes were identified. The positive themes point to SDF treatment's ease of application and addressing the immediate treatment needs on children with limited cooperation. The negative themes identified the adverse consequences of SDF treatment, specifically, the duration and appearance of the cosmetic consequences, as well as the parents' misunderstandings and incorrect expectations of the long-term sustainability of the treatment, which in many instances requires further interventions. It was also evident from the parents' comments that they needed additional educational guidance on other aspects of the treatment, such as the necessity for clinical follow-ups, information that impacted parents' overall satisfaction with the treatment their child received. Conclusion: Our results highlight the need to discuss the short and long term benefits of the treatment, as well as, its short and long-term limitations. Specifically, while it is important to discuss immediate outcomes and consequences, such as the ease of treatment and the resultant staining, to ensure that parental consent for the treatment is truly well-informed, it is also important to prepare parents, when this procedure is initially proposed, of the likely need for additional oral care interventions in the future.

Roles of different organizations in implementing patient-reported measures in routine maternity care in Finland.

BACKGROUND: The integration of patient-centered care (PCC) and value-based healthcare (VBHC) principles, emphasizing personalized, responsive care and cost efficiency, is crucial in modern healthcare. Despite advocation from the International Consortium for Health Outcomes Measurement (ICHOM) for the global adoption of these principles through patient-reported measures (PRMs), their implementation, especially the pregnancy and childbirth (PCB) set, remains limited in maternity care. This study focuses on understanding the optimal organizational entity for integrating standard ICHOM-PCB-PRMs into routine maternity care in Finland. It aims to clarify the distribution of tasks among stakeholders and gather Finnish maternity healthcare professionals' perspectives on organizational responsibility in PRM collection. The emphasis was on identifying the optimal organizational framework for managing PRMs in maternity care. RESULTS: A total of 66 maternity healthcare professionals participated in the study, reaching a consensus that public maternity care centers in Finland should be the primary entity responsible for managing PRMs in the maternity sector. Key aspects such as confidence with the role as a mother, maternal confidence with breastfeeding, and satisfaction with the result of care were identified as crucial and should be inquired about in both public maternity care centers and hospital maternity wards. The findings highlight the importance of comprehensive and consistent attention to these PRMs across public maternity care centers and hospital maternity settings to ensure holistic and effective maternal care. CONCLUSIONS: The study highlights the central role of public maternity care centers in the collection and management of PRMs within Finnish maternity care, as agreed upon by the professional consensus. It underscores the importance of a consistent and holistic approach to PRM inquiry across different care settings to enhance the quality and effectiveness of maternity care. This finding is crucial for policymakers and healthcare practitioners, suggesting that reinforcing the collaborative efforts between public maternity care centers and hospital maternity wards is vital for a patient-centric, efficient healthcare system. Aligning with PCC and VBHC principles, this approach aims to improve healthcare outcomes for pregnant and postpartum women in Finland, emphasizing the need for a unified strategy in managing maternity care.

Evaluating artificial intelligence-driven stress echocardiography analysis system (EASE study): A mixed method study.

INTRODUCTION: The use and value of artificial intelligence (AI)-driven tools and techniques are under investigation in detecting coronary artery disease (CAD). EchoGo Pro is a patented AI-driven stress echocardiography analysis system produced by Ultromics Ltd. (henceforth Ultromics) to support clinicians in detecting cardiac ischaemia and potential CAD. This manuscript presents the research protocol for a field study to independently evaluate the accuracy, acceptability, implementation barriers, users' experience and willingness to pay, cost-effectiveness and value of EchoGo Pro. METHODS AND ANALYSIS: The 'Evaluating AI-driven stress echocardiography analysis system' (EASE) study is a mixed-method evaluation, which will be conducted in five work packages (WPs). In WP1, we will examine the diagnostic accuracy by comparing test reports generated by EchoGo Pro and three manual raters. In WP2, we will focus on interviewing clinicians, innovation/transformation staff, and patients within the National Health Service (NHS), and staff within Ultromics, to assess the acceptability of this technology. In this WP, we will determine convergence and divergence between EchoGo Pro recommendations and cardiologists' interpretations and will assess what profile of cases is linked with convergence and divergence between EchoGo Pro recommendations and cardiologists' interpretations and how these link to outcomes. In WP4, we will conduct a quantitative cross-sectional survey of trust in AI tools applied to cardiac care settings among clinicians, healthcare commissioners and the general public. Lastly, in WP5, we will estimate the cost of deploying the EchoGo Pro technology, cost-effectiveness and willingness to pay cardiologists, healthcare commissioners and the general public. The results of this evaluation will support evidence-informed decision-making around the widespread adoption of EchoGo Pro and similar technologies in the NHS and other health systems. ETHICS APPROVAL AND DISSEMINATION: This research has been approved by the NHS Health Research Authority (IRAS No: 315284) and the London South Bank University Ethics Panel (ETH2223-0164). Alongside journal publications, we will disseminate study methods and findings in conferences, seminars and social media. We will produce additional outputs in appropriate forms, for example, research summaries and policy briefs, for diverse audiences in NHS.

Consideration for Health Disparities in Value Assessment Frameworks.

Background: Cost-effectiveness analysis (CEA) compares interventions based on relative value and is an integral part of value assessment. Despite recommendations for economists to consider disparities in CEAs that impact health-care resource allocation decisions, the perception held by stakeholders is that value assessment frameworks are inconsistent in practice. Methods: We reviewed value assessment reports produced by a United States (US)-based value assessment organization to identify how patients and caregiver input may contribute to how the organization considers health disparities. We purposefully extracted and categorized information relevant to health disparities from report sections on Patient and Caregiver Perspectives and Contextual Considerations and Other Potential Benefits to represent the data acknowledged by the organization's patient engagement efforts. We conducted a thematic analysis of the text in these sections and mapped to a health disparities framework endorsed by the National Institute on Minority Health and Health Disparities (NIMHD). Results: Nineteen evidence reports were included in our analysis. We identified 30 equity-related themes from external stakeholder perspectives or acknowledged in the report and 17 equity-related themes that reflect the actions taken by the economic model developers to address health disparities as a formal part of the CEA. We found examples of the value assessment organization explicitly considering health disparities in cost-effectiveness estimates. However, explicit considerations were not consistent across reports and were not necessarily aligned with patient and caregiver input during model development or consistent with the organization's own contextual considerations. Conclusion: Our findings highlight the need for a systematic approach for the consideration of health disparities within a value assessment framework and more transparency around how final cost-effectiveness approaches are determined.

Value/health technology assessment (V/HTA) organizations help review and evaluate the cost-effectiveness of new treatments compared to current therapies for different diseases. The methods used are sometimes informed by patient and caregiver input, but not always. In this study, we review reports developed by a US-based V/HTA and map the information the organization collected from patients and caregivers to a commonly used health disparities framework. We found that while many reports address common areas of health disparities, there was not a systematic and transparent approach of collecting or implementing this information.

The Tulumbe! Partnership: a case study in developing a community-led research agenda to address HIV among African immigrants in the United States.

Grassroots, community organizations are trusted resources within communities, which puts them in an ideal position to effectively engage individuals impacted by health inequities in defining meaningful research priorities. A community-centered approach to HIV research is critical for African immigrants living in the United States, who experience stigma and other socio-structural barriers to HIV prevention, care, and research engagement. Supporting community organizations with financial resources and capacity building activities to lead the development of research agendas ensures better alignment with community interests and fosters sustainability. We developed a community-initiated and -led research engagement project-Tulumbe!, which prioritized community leadership in all project activities. Community forums, health care provider and community questionnaires, interviews, and report-back sessions were held to examine the research interests and health concerns voiced by African immigrants. The iterative, community-led engagement process of more than 200 African immigrants, health providers, and researchers resulted in a community-defined research agenda with six areas of focus: family communication; self-efficacy for African immigrant women; deconstructing masculinity for African immigrant men; sexual health education for African immigrant youth; HIV stigma; and health literacy. Time, resources, and flexibility are needed to develop a viable community-led research partnership. Investing in community leadership not only produced a patient-centered research agenda but also led to community ownership of the process and results; thus, all partners were committed to sustaining the work.

Revisiting the hospital-issued gown in hospitalizations from a locus of control and patient-centered care perspectives: a call for design thinking.

Introduction: Patient-centered care (PCC) is the preferred health policy approach that emphasizes responding to individual patient preferences, wishes, and needs. PCC requires active patient engagement. While there has been extensive research on physicians' robes, there is limited research on hospital-issued patient gowns during hospitalizations. How does the gown affect the cognitive-emotional experience of hospitalized patients? How is the gown associated with PCC? Methods: The sample of this cross-sectional study consisted of 965 patients who were hospitalized at least once during the past year in a tertiary hospital. Measures were previously published. Results: The gown was strongly associated with lack of control and increased distress, and was negatively associated with patient proactiveness, engagement, and taking responsibility for self-management of chronic illness. Compared to male patients, female patients wearing the gown had stronger negative emotions and cognitively strong associations with the external locus of control, which inhibited engagement. Discussion: The hospital gown is an unacknowledged barrier to achieving PCC, inhibits patient engagement, and reflects the paradoxes of inadvertently excluding patients' needs from hospital practice. The hospital gown must be modified to protect the patient's voice and enhance engagement. Policymakers are called to apply design thinking to facilitate patient participation in decision-making to accord hospital clothing to PCC and improve healthcare delivery.