Articles published on Priority setting
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- New
- Research Article
- 10.1016/j.ridd.2026.105305
- Jul 1, 2026
- Research in developmental disabilities
- Catherine Purcell + 14 more
Setting the research priorities for Developmental Coordination Disorder (DCD)/Dyspraxia in the UK.
- New
- Research Article
- 10.1186/s12885-026-16415-2
- Jun 30, 2026
- BMC cancer
- Mai Yamaguchi + 10 more
Despite the availability of effective interventions for cancer prevention, Japan faces substantial evidence-practice gaps, such as in the low utilization of smoking cessation treatments, HPV vaccination, and cancer screening. Implementation research plays a critical role in bridging this gap by promoting the uptake of effective interventions in real-world settings. Globally, however, prioritization of the implementation of these various interventions remains unclear. To address this need, we conducted a structured priority-setting exercise using the CHNRI method and incorporating perspectives from diverse stakeholders, including citizens. We conducted a four-phase research prioritization process using the CHNRI method to identify which effective interventions for cancer prevention should be prioritized for implementation in Japan. The process included listing effective interventions for cancer prevention, surveying stakeholders, conducting a web-based survey among researchers, and calculating priority scores. Among 215 invited researchers, 92 (42.8%) and 67 (31.2%) researchers responded to the first and second surveys, respectively. In both surveys, physicians accounted for the largest proportion of respondents. Across both surveys, HPV vaccination for females, cervical cancer screening, fecal occult blood testing (FOBT), mammography, and tobacco control policies were identified as top priorities. Priorities for implementing effective interventions for cancer prevention were set through collaboration with researchers and citizens, providing a foundation for future research and progress.
- New
- Research Article
- 10.1080/17549507.2026.2693243
- Jun 28, 2026
- International journal of speech-language pathology
- Shahd Benafif + 3 more
We aimed to provide an overview of measurement instruments available to speech-language pathologists for evaluating acquired non-progressive dysarthria in Arabic-speaking adults; evaluate the availability, clinical utility, and psychometric properties of instruments to inform clinical practice; and examine how closely instruments align with the domains of the International Classification of Functioning, Disability and Health framework to help set priorities for future dysarthria assessment development. The systematic review was guided by PRISMA standards, involving seven databases and manual searching. The process of searching, screening, and data extraction was carried out by two reviewers. The selected studies met predetermined inclusion criteria. Quality of evidence and psychometric data of tools were investigated using: GRADE, MMAT, and COSMIN. Fourteen measurement tools for assessing non-progressive dysarthria in Arabic-speaking adults were identified in the literature. Tools grouped into three categories: Those used in their original format, those which had been translated and adapted, and those specifically developed for Arabic-speaking individuals. Most tools addressed the impairment domain, with limited focus on activity and participation domains. The available tools demonstrated limited clinical availability and insufficient psychometric evidence, highlighting the need for further validation and the development of linguistically and culturally appropriate tools for Arabic-speaking populations, and tools that address all International Classification of Functioning, Disability and Health framework domains.
- New
- Research Article
- 10.1097/anc.0000000000001395
- Jun 25, 2026
- Advances in neonatal care : official journal of the National Association of Neonatal Nurses
- Mirco Zannier + 4 more
Unfinished Nursing Care (UNC) in Neonatal Intensive Care Units (NICUs) is a critical determinant of infant outcomes. The Neonatal Extent of Work Rationing Instrument (NEWRI) measures the frequency of UNC but not the underlying reasons. Integrating the NEWRI with the UNC Survey (UNCS) to capture these reasons may help prevent or mitigate UNC. To develop and validate a comprehensive tool for investigating UNC and related reasons in NICUs. A developmental and validation study was conducted in 2024 following the COnsensus-based Standards for the selection of health Measurement INstruments guideline. Part A of the NEWRI and Part B of the UNCS were integrated to develop the Italian version of the NEWRI with Reasons (NEWRI_IR). Nurses from 8 Italian NICUs (N = 342) were invited to participate. Descriptive and inferential analyses, Mokken Scale Analysis, and Confirmatory Factor Analyses were conducted. A total of 198 nurses (57.9%) participated. The NEWRI_IR comprises 2 sections: Part A (25 items, care interventions) and Part B (15 items, reasons). Part A demonstrates strong scalability (H = 0.743), indicating a hierarchical structure among items. Part B revealed a 5-factor structure: "Human resources and workflow predictability," "Communication issues," "Material resources," "Priority setting," and "Human resources issues." The most frequent UNC involved parental education and support, whereas inadequate nurse staffing and frequent interruptions were main reasons. The NEWRI_IR is a psychometrically validated instrument for assessing the frequency and reasons for UNC in NICUs, supporting monitoring of care quality and guiding organizational interventions.
- New
- Research Article
- 10.1007/s40520-026-03435-y
- Jun 23, 2026
- Aging clinical and experimental research
- Warinmad Kedthongma + 3 more
Geriatric syndromes including polypharmacy and multimorbidity represent growing public health challenges in aging rural populations, yet their population-level burden remains poorly quantified in low- and middle-income countries. This study aimed to quantify gross disease burden, expressed as disability-adjusted life years (DALYs), across 25 conditions in a large rural Thai older adult population. Particular emphasis was placed on polypharmacy, multimorbidity, and potentially inappropriate medications, alongside the identification of disease clustering patterns to inform integrated care planning. Population-based cross-sectional study of 587,905 older adults (aged ≥ 60 years) from 46 secondary hospitals in the 8th Health Service Region of northeastern Thailand. DALYs were calculated using Global Burden of Disease 2017 methodology. Polypharmacy was defined as concurrent use of ≥ 5 unique active pharmaceutical ingredients (APIs) for ≥ 90 consecutive days, assessed over both 2-year and 3-year lookback windows. Multimorbidity was defined as ≥ 2 chronic conditions. Potentially inappropriate medications were assessed using 2019 American Geriatrics Society Beers Criteria and Thai Rational Drug Use (RDU) criteria. DALY estimates represent gross population-level burden attributable to each condition or syndrome, without adjustment for co-occurring conditions. Total disease burden was 48.4million DALYs (8,240,612 DALYs per 100,000 population). Diabetes mellitus accounted for the highest burden (16,511,859 DALYs; 2,910,112 per 100,000), followed by hypertension (8,331,200 DALYs; 1,417,720 per 100,000). Polypharmacy affected 59.5% (n = 349,803) contributing 4,035,612 DALYs (686,408 per 100,000), with YLL comprising 54.3% of this burden. Multimorbidity affected 48.6% (n = 285,721) contributing 3,301,572 DALYs. Potentially inappropriate medications were present in 32.1% (n = 188,718). The most common disease clusters were diabetes, hypertension, renal failure and respiratorycardiovascular combinations. Polypharmacy and multimorbidity represent substantial gross population-level burdens in rural Thai older adults. These findings apply specifically to older adults accessing outpatient services at secondary hospitals in the 8th Health Service Region and should not be generalized to the entire rural older adult population. High prevalence of potentially inappropriate medications indicates urgent need for medication optimization interventions. Diabetes emerges as the leading disease burden despite lower prevalence than hypertension, highlighting the importance of DALY-based priority setting. These gross DALY estimates should be interpreted as descriptive measures of population health loss associated with each condition, rather than causal or adjusted effect estimates.
- New
- Research Article
- 10.1002/uog.70261
- Jun 21, 2026
- Ultrasound in obstetrics & gynecology : the official journal of the International Society of Ultrasound in Obstetrics and Gynecology
- A E P Heazell + 5 more
Despite UK targets to reduce stillbirth, there has been comparatively less research focused on stillbirth than on other pregnancy complications. This study aimed to ensure that future research addresses the most important contemporary questions regarding stillbirth by updating the 2015 UK Stillbirth Priority Setting Partnership (PSP), in accordance with the James Lind Alliance (JLA), in collaboration with over 30 professional and stakeholder organizations. The Stillbirth PSP was accepted by the JLA for a refreshed list of priorities in June 2024, and a steering group was formed. A survey was then developed in English to identify potential research questions regarding stillbirth and perinatal death in the UK. The initial survey was open from 3 February 2025 to 7 April 2025, during which professionals and people affected by stillbirth were invited to submit research questions relating to either the causes, impact, prevention or management of stillbirth or pregnancy loss after 20 weeks' gestation. The questionnaire was publicized via social media and by stakeholder organizations. Participants' responses were analyzed, duplicate or out-of-scope questions were removed, and indicative questions were formulated from those submitted. Literature searches were carried out in MEDLINE, EMBASE, CINAHL, Cochrane Library and PsychInfo to identify which of the submitted questions had been answered in previously published work. The remaining unanswered research questions were carried forward into a second prioritization survey, which was hosted online from 15 September 2025 to 16 October 2025. The research questions at the highest priority level were determined by consensus at a face-to-face workshopin November 2025, involving participants with lived experience and healthcare professionals. The initial survey received 1261 responses from 525 participants. A further 24 research questions were identified from 10 clinical practice guidelines. Of these 1285 questions, 120 were out of scope. After removing duplicates and combining responses, there were 89 indicative questions. Literature searches determined that 10 questions had been answered previously. The remaining 79 questions were carried forward into the second prioritization survey and were ranked by 441 participants. The top 26 questions were taken to the face-to-face workshop, which prioritized 12 research questions by consensus. The prioritized topics for future research included prediction, prevention, understanding of the causes and management of stillbirth. This updated Stillbirth PSP indicates that researchers should prioritize studies addressing the identified research priorities, because these reflect the most important research questions for those affected by stillbirth and frontline professionals. © 2026 The Author(s). Ultrasound in Obstetrics & Gynecology published by John Wiley & Sons Ltd on behalf of International Society of Ultrasound in Obstetrics and Gynecology.
- New
- Research Article
- 10.1177/26323524261462959
- Jun 18, 2026
- Palliative Care and Social Practice
- Sara Javanparast + 5 more
BackgroundCarers are individuals who provide unpaid care to family members and friends with disabilities, medical conditions, mental illness, or who are frail and aged. The contribution of carers to the Australian health, aged care, disability, and social care systems is significant. However, they face high levels of emotional, social, physical, and financial burdens. The Australian Government has recently introduced policy reforms to improve recognition of carers. However, there is limited evidence on research priorities to facilitate the translation of policies into practice.ObjectiveTo involve Australian stakeholders to a) identify evidence gaps and research needs; and b) set research priorities for carers within the context of ageing, palliative care and end of life.DesignStakeholder consultation study for research priority setting.MethodsAustralian stakeholders with expertise in areas related to carers, aged care, and palliative care were engaged through an online survey, a research roundtable and a focus group to discuss research priorities for carers. The survey qualitative responses, notes from the roundtable, and focus group transcript have been summarised and analysed thematically, using NVivo 14 qualitative software.ResultsTwo main considerations as found from the study are ‘what to research’ and ‘how to research’ to improve recognition and support of carers in Australia. Research priorities identified include recognition and early identification of carers, timely and equitable access to support services, helping carers navigate services, support during the transition of care, post caring, including grief and bereavement support, evaluation of existing services, and carer self-care and wellbeing. Participants commented on the importance of research that engages carers meaningfully, respectfully, and in a timely and flexible manner to ensure maximum impact.ConclusionThis study guides the design of carer-centred research to facilitate the translation of carer policies into practice. It also assists in evaluating the effectiveness, cost-effectiveness and sustainability of existing and new support services.
- New
- Research Article
1
- 10.1093/eurjcn/zvaf219
- Jun 16, 2026
- European journal of cardiovascular nursing
- Lis Neubeck + 18 more
There are wide inequalities in access to cardiovascular care, and risk factors such as obesity, high blood pressure, and physical inactivity are often not well managed. We aim to identify the most important questions about how digital technologies can help people and their carers prevent cardiovascular disease and improve access to care. A priority setting partnership that aimed to generate a top 10 list of research priorities for the use of digital technology in the prevention and management of heart disease and heart conditions in the UK and Ireland, with equal input by people with lived experience and healthcare professionals. James Lind Alliance methodology was used. An initial open survey gathered research ideas, which were filtered, categorized into summary questions, and then checked against existing literature. An interim survey asked respondents to select up to 10 questions that they considered most important. The top 20 ranked questions were discussed at a final workshop. Ninety-nine respondents (62.2% with lived experience) submitted 422 questions. After removal of out-of-scope uncertainties and the creation of unanswered summary questions, 42 uncertainties were ranked by 133 respondents (73.7% with lived experience). The top 10 questions were agreed at the final workshop, and the top three were: How can technology help people to prevent and manage a heart problem if they have one? How can technology give individualised support to help people manage their heart health? and How accurate and reliable is technology to measure and manage heart health and heart risk factors? Future funding should be directed towards research questions identified by patients and healthcare professionals.
- New
- Research Article
- 10.1038/s43856-026-01726-z
- Jun 13, 2026
- Communications medicine
- Dora Van Duijvendijk + 13 more
Hypertensive disorders of pregnancy are among the leading causes of maternal and perinatal morbidity and mortality in Ghana. Despite this high burden, research priorities have historically been shaped by academic, funding, policy and industry actors, with limited engagement of patients and survivors, their carers and health care professionals. Their lived experiences offer critical insights that can complement traditional research agendas. Priority Setting Partnerships aim to address this gap by involving these stakeholders in identifying future research needs. This study aimed to identify research topics for improving care for hypertensive disorders of pregnancy in Ghana, based on these stakeholder perspectives. A priority setting partnership was conducted using an integrated approach that combined the James Lind Alliance priority setting guidance with the Research for Health Justice Ethical Toolkit to ensure ethical and contextual relevance. We show that the top 10 research priorities were related to diagnosis timing and accuracy, pathogenesis, care provision challenges, awareness, mental health and coping, shared decision making, preconception care and drug adverse effects. This is based on 774 responses obtained, between February and August 2024, from 238 participants across Ghana, consolidated into 51 research areas. A second survey completed by 243 participants prioritizes these areas into 25 interim priorities. These priorities are further refined during the final prioritization workshop into a list of 10 research priorities. This study demonstrates how locally grounded and ethically informed priority setting partnerships can be conducted in low- and middle-income settings and provide community-driven research priorities to guide future research on hypertensive disorders of pregnancy in Ghana.
- Research Article
- 10.1080/10903127.2026.2687828
- Jun 12, 2026
- Prehospital Emergency Care
- Brett Williams + 25 more
ABSTRACT OBJECTIVES Prehospital emergency care systems are expanding in scope and complexity, yet research agendas remain disjointed and often nationally focused. An internationally informed set of research priorities is needed to guide strategic investment and evidence generation across emergency medical services (EMS) and paramedicine contexts, while recognizing that local funding environments and needs will continue to shape national research decisions. The objective of this study was to identify and validate internationally informed research priorities for paramedicine and prehospital EMS using a multi-phase, stakeholder-informed consensus and analytic approach. METHODS An observational, three-phase mixed-methods study was conducted. Phase 1 involved an open-ended Delphi survey of international prehospital stakeholders to generate research priorities. Phase 2 asked participants to rate the importance of each priority using a 10-point scale; exploratory factor analysis (EFA) was performed to identify underlying factors. Phase 3 used confirmatory factor analysis (CFA) to test the factor structure. Participants included clinicians, educators, researchers, managers, students, and policy stakeholders from multiple countries to maximize breadth of stakeholder input. RESULTS Across the three phases, responses were obtained from 1,299, 717, and 954 participants, respectively, with 703 complete cases included in the final CFA. The final model comprised nine interrelated factors encompassing 40 research priorities. Factors reflected key areas of contemporary prehospital practice, including operations, clinical governance, evidence-based practice, health and well-being, special care (community paramedicine), culture, education and training, trauma care, and clinical care. Confirmatory factor analysis demonstrated acceptable model fit, supporting the robustness of the identified structure. CONCLUSIONS This study presents an internationally informed framework of research priorities for prehospital emergency care. The findings provide a practical foundation for researchers, funders, EMS organizations, and policy stakeholders to align future research efforts, reduce duplication, and address high-impact gaps across diverse prehospital systems, while remaining responsive to local context.
- Research Article
- 10.1186/s12913-026-14842-2
- Jun 12, 2026
- BMC health services research
- Anna K-J Macintyre + 4 more
Health literacy is a resource that enables individuals to make health related choices to promote and protect their health and that of those around them. For parents, health literacy is essential to access and use information and services in ways that support their child's health. Immigrant parents may face health literacy challenges due to language barriers, differing approaches to managing child health and parenting, unfamiliar services, and divergent expectations of services and staff. Since parental health literacy is linked to child health outcomes, addressing the needs of immigrant parents may help prevent avoidable inequities in child health. Few studies have developed and tested interventions to promote health literacy among parents with immigrant backgrounds. Based on results from a needs assessment conducted in a culturally and linguistically diverse population in Oslo, Norway, we aimed to co-create an action to promote parental health literacy. We undertook a two-phase co-creation process drawing on methods from the Optimising Health Literacy and Access (Ophelia) Process and the James Lind Alliance Priority Setting Partnership. In phase one, we collected action ideas from a broad range of stakeholders; analysed and synthesised the ideas; facilitated prioritisation workshops with user representatives; and selected one idea for co-design. In phase two, we co-designed the action with user representatives; and conducted quality-improvement cycles in the clinical setting. In phase one, 14 immigrant parents and 59 staff from different disciplines generated 302 action ideas. Analysis reduced these to a short-list of 22 ideas which were prioritised by user representatives (parents and staff) resulting in two Top-10 lists. Five priorities overlapped and one of these was selected for development: improving communication on services provided by the family health clinic. In phase two, we operationalised this idea by co-designing short, multilingual, animated videos about follow-up at the clinic. The videos were refined through five iterative quality improvement cycles with input from 43 end users (parents and staff). We successfully engaged user representatives, stakeholders and end users across multiple stages of co-creation and co-designed a health literacy action. The videos developed were completed to the stage of feasibility testing in the clinical setting.
- Research Article
- 10.1186/s12910-026-01502-7
- Jun 10, 2026
- BMC medical ethics
- Royi Barnea + 2 more
Healthcare systems increasingly operate under chronic scarcity, requiring prioritisation decisions beyond formal coverage policies and bedside clinical judgment. While much of the ethical literature on priority setting has focused on macro-level allocation or individual clinician decision-making, comparatively limited attention has been devoted to the meso level, where senior hospital medical managers shape access through implicit operational decisions under sustained constraint. This study examines how senior medical managers approach prioritisation when clinical need, prognosis, and expected benefit are held constant. Using structured allocation scenarios that vary only in socio-ethical and economic patient characteristics, we conceptually distinguish between the practical acceptability of non-clinical criteria and their perceived normative legitimacy. Eighty-two senior medical managers participate. Most respondents appear to reject explicit prioritisation under scarcity, endorsing equal treatment even when resources are insufficient. When prioritisation occurs, younger patients are more frequently favoured, typically on clinical rather than on economic grounds. Economic determinants, including reimbursement status, insurance coverage, and anticipated downstream costs, were rarely endorsed as explicit prioritization criteria despite participants' simultaneous recognition of responsibility for departmental sustainability. These findings suggest a structured moral tension at the meso level. Economic constraints may be reframed through clinically grounded justifications, potentially obscuring underlying value tradeoffs, while non-prioritisation itself emerges as an ethically meaningful stance with distributive consequences. Using acceptability and legitimacy as a conceptual lens, this study underscores the need for transparent, procedurally robust approaches to hospital-level prioritisation under chronic scarcity.
- Research Article
- 10.1016/j.tree.2026.05.009
- Jun 9, 2026
- Trends in ecology & evolution
- Karina L Speziale + 3 more
Rethinking representation when defining emerging conservation priorities.
- Research Article
- 10.1186/s12913-026-14925-0
- Jun 8, 2026
- BMC health services research
- Henrietta O Fawole + 10 more
Patient and public involvement (PPI) enhances the efficiency, reliability, and relevance of research design. Although evidence supports its value, PPI remains underdeveloped in sub-Saharan Africa, particularly Nigeria. This study explored physiotherapy researchers' perceptions of PPI and identified potential training needs for PPI implementation in health research in Nigeria. This study included a convenience sample of physiotherapy researchers in Nigeria who met the eligibility criteria. This cross-sectional descriptive study was mapped using the INVOLVE framework and data on socio-demographics, perception of PPI and PPI training needs were collected using an online survey. Out of 58 participants invited to this study, 50 (mean age = 40.85 ± 8.86 years; 64% male and 82% full-time physiotherapy educators) completed the online survey. The result showed participants favoured both collaborative and consultative approaches to PPI. Majority of the study participants agreed that PPI concepts were important in health research, particularly in identifying research gaps and setting priorities (84%), as well as helping to identify appropriate outcomes (94%) and recognising PPI as integral to health system improvement (100%). However, participants disagreed that PPI should be involved in data analysis (64%), report writing (60%) and disseminating results (44%). Eight-two percent of the participants expressed the need for training support in implementing PPI while the majority (98%) indicated a willingness to participate in relevant training programmes. Physiotherapy researchers in Nigeria demonstrated promising baseline information on the perception on PPI particularly in research priority setting, with unanimous agreement for both consultative and collaborative approaches to PPI in health research. However, uncertainty remains regarding its role in analysis, reporting, and methodological specifics. The findings underscore the need for structured training and accessible support resources to enhance the effective implementation of PPI in health research within Nigeria.
- Research Article
- 10.1111/hex.70504
- Jun 7, 2026
- Health Expectations : An International Journal of Public Participation in Health Care and Health Policy
- Leah Dempsey + 8 more
ABSTRACTIntroductionPeople living with a neurological condition face many difficulties in daily life, impacting their function and quality of life (QoL). There is currently no cure to many neurological conditions, therefore identifying interventions to improve QoL is of high importance. COVID‐19 changed society in many ways and understanding the research priorities from the neurological community post pandemic is urgently needed to ensure resources are used efficiently and aligned with the needs and priorities of the community. To better understand the priority areas, it is essential for individuals with lived experience to have input into priority areas for research. Therefore, the aim of this study was to identify the top research priorities for the neurological community in Australia.MethodsThis priority setting study had two phases. The first phase comprised a face‐to‐face full day workshop held in late 2019 where participants were led through rounds of brainstorming, categorising and prioritising to reach consensus on a set of research priorities. The second phase was conducted in 2023 with an online survey distributed widely to gauge whether the initial set of research priorities had changed following the event of the global pandemic.ResultsOn completion of the 2019 workshop there were a total of 27 priority areas with the top priority being diagnosis and early intervention. The 2023 survey results saw mental health and wellbeing moving up one position to become the highest priority.ConclusionMental health and wellbeing moving from second in 2019 to first in 2023, shows a need for more resources and research into this area for the neurological community. Many participants suggested that mental health is at the centre of their condition and when their mental health is poor it impacts all areas of their life. The research priorities identified in this study provide direction for researchers about what is important to people living with a range of neurological conditions, allowing researchers to focus on the needs of this community.Patient or Public ContributionThe data collection phase was planned in collaboration with the Consumer and Community Health Research Network, a consumer advocacy organisation. We partnered with people living with neurological conditions for the data collection for both phases and they gave feedback on the findings.
- Research Article
- 10.1111/bioe.70136
- Jun 6, 2026
- Bioethics
- Didde Boisen Andersen + 3 more
Rarity provides a challenging case for contemporary priority setting. On the one hand, many philosophers and economists argue that rarity has no inherent moral value, and thus that rare diseases merit no special treatment in priority setting decisions simply because they are rare. On the other hand, existing priority-setting practices demonstrate a higher willingness to pay for rare disease treatments. We argue that special priority for rare diseases might be justified on egalitarian grounds. Specifically, we develop and defend what we call the "bad numbers luck" argument for prioritizing rare diseases. This is a variant of the luck egalitarian idea of bad price luck. We conclude by discussing how higher willingness to pay, adjusted priority-setting processes, and a broader societal focus on rare diseases could address such injustices. Recognising bad numbers luck clarifies the relationship between fairness and efficiency in health care priority setting.
- Research Article
- 10.1371/journal.pgph.0006562
- Jun 4, 2026
- PLOS Global Public Health
- Muhammad Asim + 9 more
The Sindh Empowerment of Persons with Disabilities Act 2018 (SEPD Act) mandates inclusive health services for persons with disabilities. This study examines the challenges faced in implementing the disability Act’s health-related provisions, with a focus on children with disabilities in Sindh, Pakistan. A qualitative exploratory study was conducted in four districts of Sindh province. A total of 40 key informant interviews were undertaken with government officials, health administrators, pediatricians, and disability activists using a purposive sampling technique. The data were analyzed through inductive and deductive thematic analysis using the Missing Billion disability-inclusive health system framework. We identified several critical systemic gaps in the implementation of the SEPD Act in Sindh province. Weak governance, including limited intersectoral coordination, frequent bureaucratic turnover, and lack of private-sector engagement impedes implementation progress. The absence of sanctioned budget for inclusive health initiatives, particularly the lack of structured health insurance programs and limited availability of assistive devices, restrict healthcare utilization for children with disabilities and forces families to incur substantial out-of-pocket expenses for rehabilitation and healthcare. Effective delivery of health services are constrained by inadequate disability-inclusive infrastructure, insufficiently trained healthcare providers, and lack of newborn screening programs for early detection and timely intervention. Furthermore, lack of systematic collection and reporting of disability-specific data within the Health Information System limits evidence-informed policy and decision-making and the development of effective referral mechanisms for diagnosis, treatment, and rehabilitation of children with disabilities. Systemic weaknesses impede the delivery of disability-inclusive healthcare in Sindh, despite the presence of supportive legal frameworks. Our findings recommend strengthening the implementation of the SEPD Act through strategic planning, coordination, and priority setting at both provincial and district levels. Furthermore, it is essential to integrate strategies for a disability-inclusive health system at all administrative levels to ensure that the needs of persons with disabilities are prioritized.
- Research Article
- 10.1136/bmjopen-2025-111771
- Jun 3, 2026
- BMJ Open
- Tianna Magel + 6 more
BackgroundPatient engagement is the practice of “meaningful and active collaboration [of patient partners] in governance, priority setting, conducting research and knowledge translation.” Patient engagement has been implemented in various settings including clinical, research, and quality improvement, with varying levels of patient contributions and decision-making responsibility. However, little is known about the experiences of patient partners who are in leadership roles in patient-led events. For Patients, By Patients (PxP) is an annual, virtual, patient-led conference that focuses on topics important to patient partners in research. Each year’s PxP steering committee is comprised of those with patient experiences and consequently, offers an opportunity for our research team to explore patient leadership within a conference setting. Understanding more about the intricacies of patient-led events is necessary if we wish to support patient leadership as a valuable form of patient engagement.ObjectivesThe aim of this study was to explore (1) the benefits and challenges experienced by PxP steering committee members in a patient-led event and (2) how to better support patient leadership.DesignWe conducted a qualitative descriptive study of semi-structured virtual interviews with PxP conference steering committee members. Thematic analysis was used to identify core themes that were salient to the data.SettingThe Canadian Institutes of Health Research-Institute of Musculoskeletal Health and Arthritis in Vancouver, Canada, and an international virtual setting via Zoom from January 2025 to April 2025.ParticipantsPurposive sampling was used to conduct interviews with thirteen PxP patient partner steering committee members.ResultsFour core themes were identified in the data: (1) institutional support: how institutions can support patient leadership, (2) steering committee environmental characteristics: what characteristics are conducive to patient leadership, (3) personal growth: how patient leadership promotes growth among patient partners and (4) new possibilities: how patient-led events foster future expansion and opportunities. Power dynamics, intersectionality, and accessibility were also identified as central to supporting patient leadership and building safe and supportive environments.ConclusionsPatient partners are capable of leading events which promote interpersonal relationships and advance patient engagement practices and governance. Important facilitators include institutional support and governance that considers power dynamics, accessibility and intersectionality.
- Research Article
- 10.4103/sjg.sjg_87_26
- Jun 3, 2026
- Saudi journal of gastroenterology : official journal of the Saudi Gastroenterology Association
- Mohamed El-Kassas + 19 more
Metabolic dysfunction-associated steatotic liver disease (MASLD) is highly prevalent in the Middle East and North Africa (MENA) region, yet published estimates of prevalence and outcomes remain uncertain because the underlying denominators are inconsistently defined. This perspective argues that MENA MASLD epidemiology is systematically biased by three interacting mechanisms: distorted sampling frames, referral pathway selection, and structural undercapture of rural and displaced populations. Much of the current evidence is derived from convenience cohorts concentrated in urban, tertiary care settings where diagnostic availability and follow-up are greater than in the general population, leading to directional rather than random error. In parallel, risk stratification pathways that rely on two-step testing can funnel case detection toward specialty rich settings, overrepresenting advanced disease while missing earlier stages managed outside hepatology services. MASLD nomenclature change and incomplete alignment of coding and clinical documentation may further introduce artefactual inflection points that complicate trend interpretation. We highlight how underdiagnosis and under-recording in primary care propagate bias across downstream estimates and how validation of administrative algorithms and text-based ascertainment can quantify hidden disease reservoirs within routine data systems. Building on regional priority settings, we propose denominator-focused actions: probability-based sampling embedded in noncommunicable disease surveys; purposeful inclusion of rural and displaced groups; linkable data across primary care, laboratories, hospitals, and mortality registries; and harmonized coding and terminology. By decision-grade denominators, we refer to population denominators that are sufficiently representative, transparent, and linkable to support national surveillance, resource allocation, and trial-readiness decisions.
- Research Article
- 10.1016/j.jnlssr.2025.100265
- Jun 1, 2026
- Journal of Safety Science and Resilience
- Qian Yang + 5 more
The impact of inaccurate supply-demand types for emergency supplies on the psychological pain of victims: Data from flood disasters in China