Patient-Centered Research Research Articles

Perspectives of medical imaging professionals about the impact of AI on Swiss radiographers

IntroductionArtificial Intelligence (AI) is increasingly implemented in medical imaging practice, however, its impact on radiographers practice is not well studied. The aim of this study was to explore the perceived impact of AI on radiographers’ activities and profession in Switzerland. MethodsA survey conducted in the UK, translated into French and German, was disseminated through professional bodies and social media. The participants were Swiss radiographers (clinical/educators/ researchers/students) and physicians working within the medical imaging profession (radiology/nuclear medicine/radiation-oncology). The survey covered five sections: demographics, AI-knowledge, skills, confidence, perceptions about the AI impact. Descriptive, association statistics and qualitative thematic analysis were conducted. ResultsA total of 242 responses were collected (89% radiographers; 11% physicians). AI is being used by 43% of participants in clinical practice, but 64% of them did not feel confident with AI-terminology. Participants viewed AI as an opportunity (57%), while 19% considered it as a threat. The opportunities were associated with streamlining repetitive tasks, minimizing errors, increasing time towards patient-centered care, research, and patient safety. The significant threats identified were reduction on work positions (23%), decrease of the radiographers’ expertise level due to automation bias (16%). Participants (68%) did not feel well trained/prepared to implement AI in their practice, highlighting the non-availability of specific training (88%). 93% of the participants mentioned that AI education should be included at undergraduate education program. ConclusionAlthough most participants perceive AI as an opportunity, this study identified areas for improvement including lack of knowledge, educational supports/training, and confidence in radiographers. Customised training needs to be implemented to improve clinical practice and understanding of how AI can benefit radiographers.

Through Their Eyes: Using Photovoice to Capture the Capacity-Building Journey of Long Covid Patient Experts.

Long Covid, characterised by persistent symptoms following the coronavirus disease 2019 (COVID-19) infection, significantly impacts the quality of life. Engaging patients in research and care through participatory methods can enhance a shared understanding of illness and improve the relevance of research. We define Patient Experts (PEs) as persons (including patients, caregivers and providers) who have completed a series of training sessions on team building, research methods and communication at the Patient Engagement Studio, University of South Carolina (PES USC). This study explores the use of photovoice to document the experiences and capacity-building journey of Long Covid PEs within PES USC. The study employed photovoice within the COVID-19-Focused Virtual Patient Engagement Studio (CoVIP Studio). PEs submitted photographs and narratives at two distinct time points. Among the 18 PEs who participated in the project, 47 photos were collected during the training, and 31 were collected at the project's conclusion. Thematic analysis was conducted to capture changes in patient perspectives and engagement. Initial themes identified were "Hope through Community," "Collaborative Education and Research" and "Strength and Endurance." By the project's end, themes had evolved to "Working as a Team to Share and Acquire Knowledge," "Enhanced Confidence in the Future of Care" and "Perseverance and Progress." These findings highlight the transformative impact of patient engagement and the utility of photovoice in documenting longitudinal shifts in patient perspectives. Photovoice effectively engaged Long Covid patients and captured their evolving roles and perceptions as PEs. The study underscores the value of patient-led participatory methods in enhancing the relevance and applicability of clinical research, advocating for their broader adoption to improve patient-centred care and research outcomes. A CoVIP Studio stakeholder advisory board (CoVIP SAB) guided the co-development and implementation of this project. The CoVIP SAB comprised nine members with complementary skills and expertise, including three patients, three clinicians who provide care to patients with COVID-19 and three researchers with expertise in patient-centred research, COVID-19 and/or patient engagement and collaborate with patients as co-investigators. The board contributed to project design and implementation, refining photovoice prompts and shaping dissemination strategies. In addition, one PE who actively participated in all phases of the project contributed to the writing of this paper and is a coauthor. All project activities involved patients and/or caregivers with lived experience of Long Covid.

Patient-Centered Research Design to Increase Representativeness of Diverse Populations in Clinical Trials.

Patient-Centered Research Design to Increase Representativeness of Diverse Populations in Clinical Trials.

Post-operative Mortality Trends for Complicated Appendicitis: Adults with and without Disabilities

Abstract Background Even for the same complicated appendicitis, the prognosis may vary if appropriate post-operative care and follow-up are not provided. We aimed to investigate the 10-year trend of complicated appendicitis mortality among disabilities and non-disabilities peoples in Korea, recognizing potential disparities in post-surgical outcomes and the importance of adequate post-operative care. Methods Patients with complicated appendicitis were classified by severity using DRG codes. Causes of death were categorized into infectious, respiratory, cardiovascular, and digestive diseases using ICD-10 data. Age-adjusted mortality rates were calculated annually from 2008 to 2017 based on disability presence, severity, and type. Factors associated complicated appendicitis mortality were analyzed using multivariate logistic regression models. Results The mortality of complicated appendicitis was 10.2 times (40.8% vs. 413.9%) higher in people with disabilities, especially those with severe disabilities. This difference was more evident in patients with a severe disability (aOR=2.12, 95% CI:1.58-2.86), intellectual or psychological disability (aOR=2.95, 95% CI:1.49-5.85) and internal organ problems (aOR=2.05, 95% CI:1.28-3.28). Conclusions Our findings suggest that insufficient post-operative care among disabled peoples, especially those with severe disabilities, internal organ problems, and intellectual or psychological disabilities, may impact outcomes. This is exacerbated by poor healthcare facilities and limited disability awareness among healthcare workers. Additionally, further research is required to uncover unexplained mortality causes. Funding: This research was supported by the National Research Foundation of Korea (NRF) grant funded by the Ministry of Education (No. 2022R1I1A3070074) and by a grant of Patient-Centered Clinical Research Coordinating Center (PACEN) funded by the Ministry of Health & Welfare, Republic of Korea (grant number: HC23C0165). Key messages • Complicated appendicitis mortality rates show a stark 10.2-fold disparity between people with and without disabilities. • Severe disabilities, intellectual or psychological disabilities, and internal organ problems heighten the risk, emphasizing the importance of disability-inclusive healthcare practices.

Disparities in the Incidence and Prevalence of Psychotic Disorders Between With and Without Disabled

Abstract Background Numerous epidemiological studies on psychotic disorders have been conducted, however, most of the studies were conducted from an etiological perspective, and conducted with small sample sizes relatively few focused on all types of disabled, especially with a long observation period. Moreover, no study has included the whole adult population of a country. Methods This study was conducted using a data set linking the Korean National Health Insurance Service database, and disability registration data. Age-standardized incidence or prevalence rates were calculated during 2008-2017 according to the presence, severity, and type of the disability. Factors associated with psychotic disorders were examined by multivariate logistic regression. Results The age-standardized incidence and prevalence of psychotic disorders was higher among the disabled than among those without disabled across all years, especially those with severe disabled, and intellectual disabled. The gap in the prevalence of psychotic disorders between the disabled and the non-disabled has widened over time. The severe disabled and intellectual disabled showed the strongest associations with the incidence(aOR=3.04,95% CI = 2.93-3.15;aOR=6.18, 95% CI = 5.90-6.47) and prevalence(aOR=7.64,95% CI = 7.58-7.69;aOR=53.62, 95% CI = 53.04-54.22) of psychotic disorders. Conclusions The incidence and prevalence of psychotic disorders were higher in people with disabled, especially those with severe disabled, and intellectual disabled. The government must increase effort to narrow the gap between the non-disabled and disabled. Financial support: This research was supported by the Basic Science Research Program through the National Research Foundation of Korea funded by the Ministry of Education (No. 2022R1I1A3070074, and 2022R1I1A1A01068449), and a grant of Patient-Centered Clinical Research Coordinating Center funded by the Ministry of Health & Welfare, Republic of Korea (No. HC23C016500). Key messages • The incidence and prevalence of psychotic disorders were higher in the disabled, especially severe disabled, and intellectual disabled. • Important reasons for these finding may be the ‘low socioeconomic status’ and ‘mental health’ of the disabled.

Nationwide prevalence and trends in high-risk drinking among adult men the disabled and non-disabled

Abstract Background Excessive drinking is an important public issue that causes various levels of physical, psychological, behavioral problems. Especially for the disabled, it matters in that it could lead to poor health and secondary health conditions. Methods This study analyzed high-risk drinking (HRD) behaviors over a 9-year period in adult South Korean men according to disability presence, severity, type. We linked national disability registration data with the National Health Insurance claims data. Age-standardized prevalence of HRD were analyzed for each year and the odds of current HRD were determined by multivariate logistic regression after adjusting for income level, residence, insurance type, Charlson comorbidity index. Results The age-standardized HRD prevalence of the mildly disabled was higher than that among the non-disabled. Among the mildly disabled and physically disabled, younger aged group showed higher prevalence of HRD than that of non-disabled. In multivariate logistic regression analysis, the mildly (aOR=1.26, 95% CI = 1.24-1.29), physically (aOR=1.31, 95% CI = 1.28-1.33), communication disabled (aOR=1.12, 95% CI = 1.07-1.17) had higher prevalence of HRD than the non-disabled. Conclusions The prevalence of HRD was higher among the young mildly disabled than the non-disabled, this was more evident in young men physically disabled, communication disabled. This may be a result of the physical and social limitations of severely disabled and should be interpreted with caution. Social activities should be supported, and health policies on alcohol consumption should be implemented to prevent secondary conditions and reduce health disparities. Funding: This research was supported by the National Research Foundation of Korea (NRF) grant funded by the Ministry of Education (No. 2022R1I1A3070074) and by a grant of Patient-Centered Clinical Research Coordinating Center (PACEN) funded by the Ministry of Health & Welfare, Republic of Korea (grant number: HC23C0165). Key messages • The prevalence of high-risk drinking was highest among the mild disabled, especially the mild, physical, communication disabled in younger aged men. • Health policies and efforts to improve health disparities aimed at reducing alcohol consumption among people with disabilities are needed.

Nationwide trends in the suicide mortality among the disabled in Korea from 2006 to 2017

Abstract Aims The disabled are one of the priority populations at risk of suicide, but there has been no study of the factors influencing suicide mortality among the disabled in South Korea. Methods To analyze age-standardized suicide mortality (ICD-10 Codes, X60-84) for each year according to the presence, severity and type of disability, we linked three population datasets (National Health Insurance Claims Database, Disability Registry, and Deaths by Cause). Our dataset covers the entire population of South Korea, extended over a 12-year period from 2006 to 2017. The analyses were stratified by sex, and hazard ratios for suicide were determined by multivariate logistic regression after adjustment for socio-demographic and clinical variables. Results The suicide rate among the disabled was 2.24 times higher than among the non-disabled in 2017. The highest suicide rates were observed among intellectual or mental disabled, and severe disabled. In the disabled group, suicide rates were higher among those with medical benefits, older age (over 70 years), and depressive disorders in both male and female. Conclusions Although the disabled people’s suicide is often seen as an individual problem, it actually affects their families, communities and society. Therefore, government must strive to emphasize the broad view of the disabled population - not just the health of individuals, and track suicide trends and identifying risk and protective factors for suicidal behavior. From this information, suicide prevention strategies for the disabled people should be evaluated to identify the most effective interventions. Financial support: This research was supported by the Basic Science Research Program through the National Research Foundation of Korea funded by the Ministry of Education (No. 2022R1I1A3070074, and 2022R1I1A1A01068449), and a grant of Patient-Centered Clinical Research Coordinating Center funded by the Ministry of Health & Welfare, Republic of Korea (No. HC23C016500). Key messages • The suicide rate among the disabled was 2.24 times higher than among the non-disabled in 2017. • In the disabled group, suicide rates were higher among those with medical benefits, older age (over 70 years), and depressive disorders in both male and female.

Factor Influencing Unmet Healthcare Needs among the disabled

Abstract Background The unmet Healthcare needs (UHNs) of the disabled are not only detrimental to their quality of life but also can lead to serious health outcome including death. A variety of factors including socioeconomic, personal, environmental factors affect UHNs for the disabled. Methods We analyzed the UHNs status and influencing factors among 4,326 adult the disabled using Korea disability Life Data. Chi-square analysis was conducted to identify differences in UHNs according to characteristics of general, disability, environmental of the disabled. Logistic regression analysis was conducted to determine factors affecting UHNs. Results Those with low educational level (aOR=1.23, 95% CI = 1.02-1.48), those enrolled in private insurance (aOR=1.23, 95% CI = 1.02-1.50), those need help with daily living (aOR=1.30, 95% CI = 1.06-1.59), those who rarely go out (aOR=1.57, 95% CI = 1.27-1.92), those who use taxis (aOR=1.41, 95% CI = 1.05-1.89) or call taxi for the disabled when going to the hospital (aOR=1.37, 95% CI = 1.01-1.88), the communication disabled (aOR=1.30, 95% CI = 1.03-1.65), those with poor subjective health status (aOR=1.25, 95% CI = 1.04-1.49), those felt the explanation of treatment results was insufficient (aOR=4.04, 95% CI = 1.37-11.93), and those dissatisfied with healthcare services (aOR=3.52, 95% CI = 2.74-4.51) were more likely to experience UHNs. Conclusions Effective healthcare service provision for the disabled requires not only financial assistance but also social support, along with education for healthcare staff, policies with the characteristics of disabilities. Funding: This research was supported by a grant of Patient-Centered Clinical Research Coordinating Center (PACEN) funded by the Ministry of Health & Welfare, Republic of Korea (grant number: HC23C0165) and by the National Research Foundation of Korea (NRF) grant funded by the Korea government (MSIT) (No. RS-2024-00394642) Key messages • The disabled need not only financial support when using healthcare services, but also support from society, such as accompanying them to the hospital and providing transportation. • Education for healthcare staff who communicate with the disabled and provision policy to provide appropriate healthcare services according to the characteristics of disabilities are needed.

Omicron-COVID-19-Related Knowledge in Parkinson's Disease Patients and Their Caregivers: A Cross-sectional Study.

The Omicron variant of SARS-CoV-2 (COVID-19) became the global community's third major cause of worry. In the current study, we deployed a self-reported survey questionnaire to investigate the degree of comprehension, awareness and perception of the Omicron variant of COVID-19 in patients with Parkinson's disease (PD) and their respective caregivers (CGs). Using a standardised questionnaire, we conducted a prospective study on PD patients attending the neurology outpatient department prior to and during the COVID-19 pandemic. The study period was between February and August of 2022. A total of 114 CGs and 134 disease-affected patients were evaluated. Approximately 1.8% of the CGs and 4.5% of the patients contracted the Omicron-COVID-19. Over half of the patients (77.6%) were aware of the Omicron variant, and approximately 40.3% of them were aware of its symptoms. After receiving the Covid immunisation, patients (94.02%) reported no change in symptoms. The percentage of patients and CGs who had no symptoms of the viral infection and were not even got tested ever was 95.5% and 98.2%, respectively. Further, patients (95.5%) opted for the 'offline' as a preferred mode of consultation, citing the precision of treatment being the main reason. No definite correlation between the Omicron variant infection and symptoms of PD could be established. The awareness regarding Omicron variant was largely unknown. More patient-centred research on larger population groups, incorporating literate and urban groups would unravel the knowledge gaps.

A student-community partnership to enhance cancer research training

BackgroundDespite the importance of community involvement in research, little formal training in community outreach and engagement (COE) is offered to cancer research trainees. A collaboration between the Office of COE and the Office of Cancer Research Training and Education Coordination (CRTEC) at the Sidney Kimmel Comprehensive Cancer Center at Jefferson led to the COE-CRTEC Trainee Working Group, a unique program in which trainees in cancer research each created a novel COE initiative.MethodsFour cancer research trainees were selected to serve as COE Program Liaisons (CPLs), each aligned with one of the four cancer center research programs. Each CPL developed, implemented, and evaluated a project that enhanced the bidirectional relationship between their research and the community. Trainees were provided a modest budget, support from the Office of COE, and a requirement to complete the project within one academic year.ResultsProjects included a cancer education seminar for older adults at a senior center, a prostate cancer education and screening event at a predominantly African American church, a video demonstrating a day in the life of a skin cancer researcher, and a podcast that featured SKCCC investigators answering research questions from community members.ConclusionStudents who would not typically be exposed to COE training gained experience developing, implementing, and evaluating community-based initiatives. Projects were diverse in topic and approach, reflecting the diversity of the trainees and the community. Allowing trainees, those who are the next generation of cancer researchers, to design community-based research may lead to more patient-centered research in the future.

Researcher and partner perspectives on the relationship between engagement in research and three uses of patient-centered comparative clinical effectiveness research study findings

BackgroundThe uptake of research findings into clinical practice is critical to providing health care that improves health outcomes for patients. This study explored how Patient-Centered Outcomes Research Institute (PCORI) awardees perceive the relationship between engagement of patients and other partners in research and three uses, or applications, of patient-centered comparative clinical effectiveness research (CER) study findings, which may lead to uptake in clinical practice: (1) Integration into clinical practice guidelines, recognized point-of-care decision tools, or documents that may inform policy; (2) Implementation beyond the study, including at sites outside of the study setting or patient populations; and (3) Active dissemination of findings to specific audiences by parties external to the study team.MethodsThis exploratory qualitative study examined awardee and partner perceptions of what led to each use of study findings and how engaged partners contributed. We purposively selected PCORI-funded research projects with documentation of each use and conducted virtual interviews with 42 individuals (15 PIs or project leads, 2 research team members, and 25 partners) from 17 projects. We conducted thematic analysis of individual projects or project sets, across projects within each use case, and across the three uses.ResultsParticipants described three primary activities in which engaged partners made contributions before, during and after CER studies that facilitated the use of study findings: (1) generating relevant study findings, (2) distributing study findings strategically, and (3) making connections to people or organizations outside the study team. In addition, engagement continued to facilitate the use of study findings during subsequent PCORI-funded implementation and dissemination-specific projects, with partners adapting interventions and creating and tailoring dissemination messages and products. Finally, participants described attributes of teams’ engagement approaches that may have supported partner contributions, including early and ongoing engagement, leveraging partners’ connections and understanding of community needs, and using multiple engagement approaches.ConclusionThis study identified examples of how engagement can help facilitate the use of CER study findings, especially when engagement contributions occur in meaningful ways. Findings from this study suggest a framework for future research on the relationship between engagement in research and uptake of study findings into clinical practice.

Burden of BK Virus Infection and BK Virus-Associated Nephropathy in Kidney Transplant Recipients: Scoping Review Reveals Gaps in Patient-Centered Research

Burden of BK Virus Infection and BK Virus-Associated Nephropathy in Kidney Transplant Recipients: Scoping Review Reveals Gaps in Patient-Centered Research

Investigating the Salience of Clinical Meaningfulness and Clinically Meaningful Outcomes in Metastatic Breast Cancer Care Delivery

PURPOSE As metastatic breast cancer (mBC) treatment evolves, there is a need to understand how clinical meaningfulness, or a meaningful change in a patient's daily life, and clinically meaningful outcomes inform patient-centered care. Partnering with key stakeholders ensures patient-centered research incorporates the knowledge and expertise of advisors with lived experience. We describe a multistakeholder engagement approach to examine how people living with mBC (PLWmBC), caregivers, and health care providers interpret clinical meaningfulness and clinically meaningful outcomes and their influence on mBC treatment decision making and care. METHODS Qualitative focus groups with PLWmBC, caregivers, and health care providers were conducted and analyzed along three overarching themes: interpretations of clinical meaningfulness and clinically meaningful outcomes; treatment recommendations, preferences, and decisions; and implications for clinical practice. Patient-led and professional organizations served as research partners in study design, implementation, and interpretation of findings. RESULTS Partnerships were established with four patient-led and three professional organizations representing diverse constituencies throughout the United States. Twenty-two focus groups were conducted with 50 PLWmBC, 24 caregivers, and 41 health care providers (oncologists, n = 11; advanced practice providers, n = 13; oncology nurses, n = 17) between March and June 2023. PLWmBC and caregivers were unfamiliar with the concepts of clinical meaningfulness and clinically meaningful outcomes. Although health care providers were familiar, they did not use the terms when discussing treatment with PLWmBC. Across groups, participants emphasized the importance of meaningful outcomes beyond overall survival, including quality of life and improvement in symptoms and functioning. Participants noted that outcomes considered meaningful are individualized and dynamic. CONCLUSION This study offers insight into how partnering with patient advocacy and professional organizations can enhance research quality and aid translation of findings to clinical practice, thereby supporting patient-centered care.

Prevalent Metformin Use in Adults With Diabetes and the Incidence of Long COVID: An EHR-Based Cohort Study From the RECOVER Program.

Studies show metformin use before and during SARS-CoV-2 infection reduces severe COVID-19 and postacute sequelae of SARS-CoV-2 (PASC) in adults. Our objective was to describe the incidence of PASC and possible associations with prevalent metformin use in adults with type 2 diabetes mellitus (T2DM). This is a retrospective cohort analysis using the National COVID Cohort Collaborative (N3C) and Patient-Centered Clinical Research Network (PCORnet) electronic health record (EHR) databases with an active comparator design that examined metformin-exposed individuals versus nonmetformin-exposed individuals who were taking other diabetes medications. T2DM was defined by HbA1c ≥6.5 or T2DM EHR diagnosis code. The outcome was death or PASC within 6 months, defined by EHR code or computable phenotype. In the N3C, the hazard ratio (HR) for death or PASC with a U09.9 diagnosis code (PASC-U09.0) was 0.79 (95% CI 0.71-0.88; P < 0.001), and for death or N3C computable phenotype PASC (PASC-N3C) was 0.85 (95% CI 0.78-0.92; P < 0.001). In PCORnet, the HR for death or PASC-U09.9 was 0.87 (95% CI 0.66-1.14; P = 0.08), and for death or PCORnet computable phenotype PASC (PASC-PCORnet) was 1.04 (95% CI 0.97-1.11; P = 0.58). Incident PASC by diagnosis code was 1.6% metformin vs. 2.0% comparator in the N3C, and 2.1% metformin vs. 2.5% comparator in PCORnet. By computable phenotype, incidence was 4.8% metformin and 5.2% comparator in the N3C and 24.7% metformin vs. 26.1% comparator in PCORnet. Prevalent metformin use is associated with a slightly lower incidence of death or PASC after SARS-CoV-2 infection. PASC incidence by computable phenotype is higher than by EHR code, especially in PCORnet. These data are consistent with other observational analyses showing prevalent metformin is associated with favorable outcomes after SARS-CoV-2 infection in adults with T2DM.

A Coalition to Advance Treatments for Parkinson's Disease, Dementia with Lewy Bodies, and Related Disorders.

Parkinson's disease (PD) and dementia with Lewy bodies (DLB) share underlying neuropathology. Despite overlapping biology, therapeutic development has been approached separately for these clinical syndromes and there remains no treatment to slow, stop or prevent progression of clinical symptoms and development disability for people living with PD or DLB. Recent advances in biomarker tools, however, have paved new paths for biologic definition and staging of PD and DLB under a shared research framework. Patient-centered research funding organizations see the opportunity for a novel biological staging system for PD and DLB to accelerate and increase success of therapeutic development for the patient communities they serve. Amid growing momentum in the field to develop biological definitions for these neurodegenerative diseases, 7 international nonprofit organizations focused on PD and DLB came together to drive multistakeholder discussion and input on a biological staging system for research. The impact of these convenings to date can be seen in changes incorporated into a proposed biological staging system and growing alignment within the field to rapidly apply new scientific knowledge and biomarker tools to inform clinical trial design. In working together, likeminded nonprofit partners who were initially catalyzed by the significant potential for a biological staging system also realized the power of a shared voice in calling the field to action and have since worked together to establish a coalition to advance precompetitive progress and reduce hurdles to developing better treatments for PD, DLB and biologically related disorders.

The Odyssey of HOMER: Comparative Effectiveness Research on Medication for Opioid Use Disorder During the COVID-19 Pandemic.

The usual challenges of conducting primary care research, including randomized trials, have been exacerbated, and new ones identified, during the COVID-19 pandemic. HOMER (Home versus Office for Medication Enhanced Recovery; subsequently, Comparing Home, Office, and Telehealth Induction for Medication Enhanced Recovery) is a pragmatic, comparative-effectiveness research trial that aims to answer a key question from patients and clinicians: What is the best setting in which to start treatment with buprenorphine for opioid use disorder for this patient at this time? In this article, we describe the difficult journey to find the answer. The HOMER study began as a randomized trial comparing treatment outcomes in patients starting treatment with buprenorphine via induction at home (unobserved) vs in the office (observed, synchronous). The study aimed to enroll 1,000 participants from 100 diverse primary care practices associated with the State Networks of Colorado Ambulatory Practices and Partners and the American Academy of Family Physicians National Research Network. The research team faced unexpected challenges related to the COVID-19 pandemic and dramatic changes in the opioid epidemic. These challenges required changes to the study design, protocol, recruitment intensity, and funding conversations, as well as patience. As this is a participatory research study, we sought, documented, and responded to practice and patient requests for adaptations. Changes included adding a third study arm using telehealth induction (observed via telephone or video, synchronous) and switching to a comprehensive cohort design to answer meaningful patient-centered research questions. Using a narrative approach based on the Greek myth of Homer, we describe here the challenges and adaptations that have provided the opportunity for HOMER to thrive and find the way home. These clinical trial strategies may apply to other studies faced with similar cultural and extreme circumstances.

Setting the Agenda for Patient-Centered Research in Infant and Young-Child Feeding: Results from the Academy of Breastfeeding Medicine and Reaching Our Sisters Everywhere.

Background: Breastfeeding is critically important for optimal health of both birthing people and their infants. Shared, patient-centered goals of how health care team members, community groups, and families can help facilitate breastfeeding success are needed, as are ways to define and measure what breastfeeding success looks like from the patient's perspective. Methods: The Academy of Breastfeeding Medicine and Reaching Our Sisters Everywhere's collaborated in a multi-methods approach to identify breastfeeding priorities most important to parents. Results: We identified (1) Key components of a successful breastfeeding journey defined by parents and families, (2) Research priorities that will enable families to achieve breastfeeding. Conclusion: Dissemination of these findings can foster research efforts that are codesigned with birthing parents and families and reflect their priorities.

Redefining priorities: a call for patient-centred cancer care and research.

Redefining priorities: a call for patient-centred cancer care and research.

CASCADE: A Community-Engaged Action Model for Generating Rapid, Patient-Engaged Decisions in Clinical Research.

Integrating patient and community input is essential to the relevance and impact of patient-focused research. However, specific techniques for generating patient and community-informed research decisions remain limited. Here, we describes a novel CASCADE method (Community-Engaged Approach for Scientific Collaborations and Decisions) that was developed and implemented to make actionable, patient-centered research decisions during a federally funded clinical trial. The CASCADE approach includes 7 key pillars: (1) identifying a shared, specific, and actionable goal; (2) centering community input; (3) integrating both pre-registered statistical analyses and exploratory "quests"; (4) fixed-pace scheduling, supported by technology; (5) minimizing opportunities for cognitive biases typical to group decision making; (6) centering diversity experiences and perspectives, including those of individual patients; (7) making decisions that are community-relevant, rigorous, and feasible. Here, we implemented these pillars within a three-day CASCADE panel, attended by diverse members of a research project team that included community interest-holders. The goal of our panel was to identify ways to improve an algorithm for matching patients to specific types of telehealth programs within an active, federally funded clinical trial. The CASCADE panel was attended by 27 participants, including 5 community interest-holders. Data reviewed to generate hypotheses and make decisions included (1) pre-registered statistical analyses, (2) results of 12 "quests" that were launched during the panel to answer specific panelist questions via exploratory analyses or literature review, (3) qualitative and quantitative patient input, and (4) team member input, including by staff who represented the target patient population for the clinical trial. Panel procedures resulted in the generation of 18 initial and 12 final hypotheses, which were translated to 19 decisional changes. The CASCADE approach was an effective procedure for rapidly, efficiently making patient-centered decisions during an ongoing, federally funded clinical trial. Opportunities for further development will include exploring best-practice structural procedures, enhancing greater opportunities for pre-panel input by community interest-holders, and determining how to best standardize CASCADE outputs. The CASCADE procedure was developed in the context of NCT05999448.

Semantic Mapping of Named-Entities in openEHR Templates and Ad-hoc Generation of Compositions.

Integration of free texts from reports written by physicians to an interoperable standard is important for improving patient-centric care and research in the medical domain. In the context of unstructured clinical data, NLP Information Extraction serves in finding information in unstructured text. To our best knowledge, there is no efficient solution, in which extracted Named-Entities of an NLP pipeline can be ad-hoc inserted in openEHR compositions. We therefore developed a software solution that solves this data integration problem by mapping Named-Entities of an NLP pipeline to the fields of an openEHR template. The mapping can be accomplished by any user without any programming intervention and allows the ad-hoc creation of a composition based on the mappings.