Health Research Collaboration Research Articles

Advancing Research Alongside Patient Partners: Next-Generation Best Practices for Effective Collaboration in Health Research.

Ovarian Cancer Canada's Patient Partners in Research (PPiR) is a national volunteer-based program that trains and connects individuals with lived ovarian cancer (OC) experience to diverse research opportunities, to maximize the clinical relevance and real-life impact of OC research in Canada. A steadily increasing demand for patient partners to be involved as research team members and decision-makers led us to co-develop with the PPiR team a series of "best practices" for researcher-patient partnerships. This framework formalizes our evolving approach to patient engagement and begins to address challenges that can arise in research settings focused on less commonly diagnosed yet significant and fatal diseases such as OC: (1) Start early. (2) Foster collaboration among the entire research team. (3) Establish expectations and communicate regularly. (4) Report impact of patient partner contributions. (5) Ensure adequate resources. While there are ongoing challenges associated with patient engagement that need to be addressed, data collected from an anonymous survey of Canadian OC researchers show a marked improvement in perceived benefits of patient engagement over time and validate the best practices presented herein. Developed in the context of OC research, these best practices can be adapted to a variety of health research settings with similar challenges.

The Latin American Lymphoma Study Group (GELL): A Model of Collaborative Research in Latin America

Introduction Collaborative health research has proven to be an effective approach to addressing regional and international challenges in the diagnosis, treatment, and management of diseases (1–4). In Latin America, a region characterized by geographic, socioeconomic, and epidemiological diversity, the creation of research networks is essential to unify efforts and generate knowledge applicable locally and internationally (1–4). In this context, the Latin American Lymphoma Study Group (GELL) emerges as a key player in lymphoma research—a family of hematologic cancers with high clinical and molecular heterogeneity. Origins and Structure of GELL Founded in 2018, GELL is a collaborative research network comprising 14 Latin American countries, supported by prestigious international institutions such as the Dana Farber Institute, MD Anderson Cancer Center, and Tampa General Hospital. The group’s primary objective is to conduct multicenter studies that provide high-quality epidemiological, clinical, and molecular data on various lymphoma subtypes. GELL's leadership includes Dr. Brady Beltrán (Peru) as president, Dr. María Torres (Venezuela) as vice president, and Dr. Denisse Castro (Peru) as treasurer. This organizational structure enables efficient coordination among member countries, ensuring the planning and execution of clinical and translational studies across the region. Objectives and Achievements of GELL One of GELL's main objectives is to determine the epidemiology of different lymphoma subtypes in Latin America, including diffuse large B-cell lymphoma (DLBCL), follicular lymphoma, nasal-type T/NK-cell lymphoma, and Epstein-Barr virus (EBV)-associated lymphoma. The group also aims to develop retrospective and prospective studies on inflammatory biomarkers and novel prognostic scores (5–7). These studies help identify risk factors and clinical parameters that predict treatment response and prognosis in lymphoma patients. To date, GELL has collected data on more than 6,400 patients in retrospective studies, including: 1,500 patients with DLBCL (6,8). 1,000 patients with peripheral T-cell lymphoma (PTCL-NOS) (9). 800 patients with follicular lymphoma (10). 2,000 patients with adult T-cell leukemia/lymphoma (ATLL) (11). These retrospective studies are crucial for generating hypotheses that guide future prospective studies, contributing to a better understanding of lymphomas in the region. Scientific Production and Knowledge Dissemination GELL has achieved remarkable scientific output, contributing 37 works that include: 6 articles published in high-impact journals. 30 posters presented at international conferences such as ASH, EHA, and the World HTLV-1 Congress. 4 oral sessions at international scientific events. Among its most significant scientific achievements is the multicenter validation of the prognostic value of the neutrophil-to-lymphocyte ratio in DLBCL patients (12), published in collaboration with other international institutions. Additionally, GELL has developed consensus on relevant topics such as the management of patients with unspecified peripheral T-cell lymphoma (PTCL-NOS), which is in the process of publication, and the impact of COVID-19 on lymphoma patients (13). The impact of GELL's scientific production is measured not only in terms of publications and presentations but also in its ability to influence clinical practice at the regional level. The creation of consensuses and participation in clinical trials ensure that GELL's findings are immediately applicable to patient care in Latin America. Future Projects and GELL's Expansion GELL is not content with its achievements and continues to expand its horizons towards new research projects. One of the most ambitious projects underway is a molecular study on the genetic profile of DLBCL in Latin America, which will analyze over 400 genes using the Foundation One–Heme platform. This will be the first study of its kind in the region, providing a detailed understanding of the genetic alterations characterizing lymphomas in Latin American patients. Another significant project involves conducting prospective clinical trials on nasal-type T/NK-cell lymphoma and a meta-analysis on inflammatory biomarkers in lymphomas. These studies not only contribute to advancing scientific knowledge but also allow patients access to innovative treatments through clinical trials, promoting equity in access to advanced therapies. International Collaboration GELL has established collaborations with research groups from Japan, Brazil, and Italy, enabling it to build one of the largest global databases on T-cell lymphomas and EBV-associated DLBCL. These collaborations reflect the growing relevance of studies conducted in Latin America and position GELL as a global leader in lymphoma research. Conclusion The Latin American Lymphoma Study Group (GELL) has demonstrated that scientific collaboration in Latin America can generate valuable knowledge applicable globally. Its efforts to unify data from multiple countries, conduct prospective and retrospective studies, and promote participation in clinical trials have significantly improved the care of lymphoma patients in the region. With ambitious projects on the horizon, such as the molecular analysis of DLBCL and new clinical trials, GELL is well-positioned to continue leading lymphoma research in Latin America and beyond.

Beyond buzzwords: fostering interdisciplinary and collaborative global health research in Germany and beyond.

Germany has increased its political and financial commitment for global health, but this needs to be backed by a robust global health research ecosystem with strong partnerships in low- and middle-income countries (LMICs). This article suggests pathways for empowering researchers to operate beyond their disciplinary silos and strengthen partnerships across sectors and countries. The authors identify barriers and enablers of operations from a nascent research network in Germany, trusting that this experience can inform other initiatives seeking to stoke interdisciplinary and collaborative global health research. This article represents the culmination of extensive reflections spanning the initial four years of the German Alliance for Global Health Research (GLOHRA). The insights have additionally been informed by an analysis of publicly available reports, internal procedural records, and externally conducted studies based on interviews with researchers and policymakers. GLOHRA has developed a toolbox of practices that foster interdisciplinary research and support capacity-building. Insights indicate that highly interdisciplinary and diverse governance structures and seed-funding for interdisciplinary and cross-sector research with appropriate review processes represent a critical step for achieving these aims. Additionally, inclusive training sessions and networking events help to bridge disciplinary boundaries, equipping researchers to envision the broader context of their work. Despite achievements, challenges persist. Wider support, especially from universities and research institutions, is necessary to make global health research an attractive career path and to reduce bureaucratic barriers for collaborators in LMICs. Sustained, longer-term federal funding mechanisms will also be essential for ongoing progress.

Data protection legislation in Africa and pathways for enhancing compliance in big data health research

BackgroundThe increasing availability of large volumes of personal data from diverse sources such as electronic health records, research programmes, commercial genetic testing, national health surveys and wearable devices presents significant opportunities for advancing public health, disease surveillance, personalized medicine and scientific research and innovation. However, this potential is hampered by a lack of clarity related to the processing and sharing of personal health data, particularly across varying national regulatory frameworks. This often leaves researcher stakeholders uncertain about how to navigate issues around secondary data use, repurposing data for different research objectives and cross-border data sharing.MethodWe analysed 37 data protection legislation across Africa to identify key principles and requirements for processing and sharing of personal health and genetic data in scientific research. On the basis of this analysis, we propose strategies that data science research initiatives in Africa can implement to ensure compliance with data protection laws while effectively reusing and sharing personal data for health research and scientific innovation.ResultsIn many African countries, health and genetic data are categorized as sensitive and subject to stricter protection. Key principles guiding the processing of personal data include confidentiality, non-discrimination, transparency, storage limitation, legitimacy, purpose specification, integrity, fairness, non-excessiveness, accountability and data minimality. The rights of data subjects include the right to be informed, the right of access, the right to rectification, the right to erasure/deletion of data, the right to restrict processing, the right to data portability and the right to seek compensation. Consent and adequacy assessments were the most common legal grounds for cross-border data transfers. However, considerable variation exists in legal requirements for data transfer across countries, potentially creating barriers to collaborative health research across Africa.ConclusionsWe propose several strategies that data science research initiatives can adopt to align with data protection laws. These include developing a standardized module for safe data flows, using trusted data environments to minimize cross-border transfers, implementing dynamic consent mechanisms to comply with consent specificity and data subject rights and establishing codes of conduct to govern the secondary use of personal data for health research and innovation.

Navigating the complexity of a collaborative, system-wide public health programme: learning from a longitudinal qualitative evaluation of the ActEarly City Collaboratory

BackgroundAddressing the upstream social determinants of health (e.g. built environment, education) can reduce the burden of non-communicable diseases. To do so effectively often requires system-wide collaboration. However, collaborating across multiple sectors, organizations and disciplines within a complex system can be challenging. ActEarly was a public health research consortium that aimed to improve child health by building an interdisciplinary, cross-city partnership to develop and/or evaluate upstream interventions, increase research capacity and improve collaboration between researchers, local authorities and communities. This paper explores ActEarly’s experiences of navigating complexity to identify mechanisms that supported its implementation and proposes recommendations for future intersectoral and interdisciplinary population health research collaborations.MethodsWe conducted a longitudinal qualitative study of ActEarly, integrating findings from inductive documentary analysis of internal documents (mainly meetings minutes and reports) (n = 114) and interviews (n = 70) with 45 consortium members at three different timepoints (2018, 2021, 2023). Participants worked across different organizations, cities, roles and levels of seniority in the consortium.FindingsClarity, Unity, Flexibility and Feasibility were seen as the key mechanisms required to support ActEarly’s implementation. Clear aims, governance structures and communication were necessary to manage the uncertainty of the complex system. A unified approach, characterized by strong relationships, having a shared vision and communal access to resources supported effective collaboration. Flexibility was required to adjust to different ways of working, respond to wider system events and manage the consortium. Establishing feasible aims that responded to the limitations of the system, the available resources and research infrastructure was required for teams to deliver the work.ConclusionsImplementing multi-faceted programmes in a complex system can be challenging. We recommend that future whole-systems consortia seeking to improve population health build Clarity, Unity, Flexibility and Feasibility into their programmes, noting the complex interrelationships between these factors. Iterative reflections from all parties should support delivery amidst the uncertainty that comes with running a population health research collaboration, and strong leadership and governance should play a key role in ensuring that these are built into foundations the programme.

Data as scientific currency: Challenges experienced by researchers with sharing health data in sub-Saharan Africa.

Innovative information-sharing techniques and rapid access to stored research data as scientific currency have proved highly beneficial in healthcare and health research. Yet, researchers often experience conflict between data sharing to promote health-related scientific knowledge for the common good and their personal academic advancement. There is a scarcity of studies exploring the perspectives of health researchers in sub-Saharan Africa (SSA) regarding the challenges with data sharing in the context of data-intensive research. The study began with a quantitative survey and research, after which the researchers engaged in a qualitative study. This qualitative cross-sectional baseline study reports on the challenges faced by health researchers, in terms of data sharing. In-depth interviews were conducted via Microsoft Teams between July 2022 and April 2023 with 16 health researchers from 16 different countries across SSA. We employed purposive and snowballing sampling techniques to invite participants via email. The recorded interviews were transcribed, coded and analysed thematically using ATLAS.ti. Five recurrent themes and several subthemes emerged related to (1) individual researcher concerns (fears regarding data sharing, publication and manuscript pressure), (2) structural issues impacting data sharing, (3) recognition in academia (scooping of research data, acknowledgement and research incentives) (4) ethical challenges experienced by health researchers in SSA (confidentiality and informed consent, commercialisation and benefit sharing) and (5) legal lacunae (gaps in laws and regulations). Significant discomfort about data sharing exists amongst health researchers in this sample of respondents from SSA, resulting in a reluctance to share data despite acknowledging the scientific benefits of such sharing. This discomfort is related to the lack of adequate guidelines and governance processes in the context of health research collaborations, both locally and internationally. Consequently, concerns about ethical and legal issues are increasing. Resources are needed in SSA to improve the quality, value and veracity of data-as these are ethical imperatives. Strengthening data governance via robust guidelines, legislation and appropriate data sharing agreements will increase trust amongst health researchers and data donors alike.

Learning experiences from an online QI fellowship programme during COVID-19 – a qualitative study

BackgroundDuring the COVID-19 pandemic in the United Kingdom, multiple aspects of everyday human existence were disrupted. In contrast, almost all levels of educational learning continued, albeit with modifications, including adaptation to virtual—or online—classroom experiences. This pedagogic transition also occurred in the National Institute of Health and Care Research Applied Research Collaboration Northwest London’s (NIHR ARC NWL) Improvement Leader Fellowship, an annual programme focusing on quality improvement (QI). This qualitative study aimed to understand how these changes impacted the Fellows’ learning experience.MethodsWe explored the experiences of two cohorts of programme Fellows (n = 18, 2020–2021 and n = 15, 2021–2022) with focus groups, analysed under a constructivist qualitative research paradigm.ResultsThe two primary and four sub-themes that emerged were: Online QI learning experience (benefits and challenges) and Implementing online QI learning (facilitators and barriers). While benefits had three further sub-themes (i.e., digital flexibility, connection between learners, and respite from impact of COVID-19), challenges had four (i.e., lack of interaction, technological challenges and digital exclusion, human dimension, and digital fatigue). While the facilitators had three sub-themes (i.e., mutual and programmatic support, online resource access, and personal resilience), barriers had one (i.e., preventing implementation and lack of protected time).ConclusionDespite challenges to in-person ways of working, online learning generally worked for action-orientated QI learning, but changes are needed to ensure the effectiveness of future use of virtual learning for QI. Understanding the challenges of the translation of learning into action is crucial for implementation learning, gaining insight into how improvement Fellows navigated this translation when learning remotely and implementing directly in their workplace is key to understanding the evolving nature of implementation over the pandemic years and beyond.

Building Relationships, Forming Collaborations: Lessons Learned From an Unconference Seeking to Cultivate Solutions in Healthcare.

Calls for a 'major rethinking' of the delivery of healthcare services are echoed across Canada as the healthcare crisis continues. Proposed strategies to address the challenges of this crisis include: a transdisciplinary approach that is patient-focused and community-based; a representative team composed of patients, caregivers, healthcare providers, decision makers and policymakers; and authentic collaboration among stakeholder groups throughout the research cycle. This study aimed to enable community members to take on a leading role in building capacity and to provide a space for discourse among diverse groups while respecting community wisdom, values and priorities. The Collaborative Health Research Institute of Southern Alberta (CHRISA) organized a participant-oriented Unconference event to address the factors contributing to the healthcare crisis in Alberta, Canada. An Unconference is a participant-oriented meeting where the attendees nominate the topics, agree on the agenda and lead the sessions. This article describes the Unconference programme and presents the findings from a thematic analysis of the discussion notes from breakout sessions, feedback from participants (i.e., lessons learned) and pragmatic recommendations for future Unconference events. Findings from sessions included the following: (1) identifying the 'wicked' problems, (2) the factors/causes contributing to each problem (i.e., contributors) and (3) potential multifaceted solutions or ideas to remedy the problem. Lessons learned from the postevent evaluation resulted in six recommendations for organizing future Unconferences. The CHRISA Unconference achieved its goals by providing a venue for attendees to connect, engage and network on topics of interest, explore new ways of addressing challenges in healthcare and serve as a foundation for future initiatives and collaborations in healthcare research and practice. The Unconference was attended by community members who identify as patients, frontline workers, programme administrators and representatives of public organizations and agencies. Participants contributed to breakout session discussions, provided feedback on the Unconference and offered recommendations for future events. The co-authors are service users, people with lived experience or those work in the healthcare setting; they have been involved in data collection, analysis and interpretation, and contributed to this report.

Implementation of a common data model in Health Data Research Network Canada: Lessons learned

BackgroundThe Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM) is a standardized structure for observational data that enables collaborative health research. Health Data Research Network (HDRN Canada) is conducting a pilot study to implement this standard at partner data linkage centers. ObjectiveOur objective is to describe the process used to implement the OMOP CDM, methodological and technical challenges, and the approach to evaluate CDM implementation at multiple sites. ApproachCDM working group members include technical staff from data linkage centers in four provinces and a national data coordinating center, HDRN Canada operational and executive leads, and OMOP CDM consultants. The evaluation aims to collect quantitative and qualitative information on Extract, Transform, and Load (ETL) processes, performance of the CDM in a multi-site observational case study, and data quality. ResultsInitial steps have included collaborative learning about the CDM structure, importing open-source tools and licensed coding standards (i.e., Systematized Nomenclature of Medicine-Clinical Terms [SNOMED-CT], RxNorm) at data linkage centres, and exploring the technical requirements for developing ETL processes and hosting OMOP data. Creation of select OMOP tables has been accompanied by discussions about models for mapping clinical and prescription drug coding standards. A scoping review of evaluation strategies is underway. Conclusions and ImplicationsThe benefits of standardizing health data for multi-site research and supporting the production of findable, accessible, interoperable and reusable (FAIR) national data underscores the importance of HDRN Canada embarking on this OMOP CDM implementation project. The lessons learned will benefit other multi-site data standardization initiatives.

Advancements in Pan-Canadian Data Access and Analysis Facilitation: Insights from Collaborative Health Research supported in Alberta, British Columbia, and Ontario

ObjectiveTo highlight progress in facilitating and supporting pan-Canadian data analysis research that is supported by a central coordinating center. This process will be illustrated with the use of a recently completed project that has been supported using data from Alberta, British Columbia, and Ontario. ApproachThe project represents a significant endeavor within the central coordinating center, as it necessitates coordination for data access, data importation and analytical support across three provinces. The focus will be on the administrative processes refined to support collaborative research endeavors. While specific project details will remain undisclosed, procedural enhancements within the central coordinating center framework will be highlighted. Key discussion points include standardized protocols for data access, collaborative efforts to streamline data importation, and facilitation of analytical support across jurisdictions. The type of cross-jurisdictional analytic support will as well be highlighted; data variables harmonization and sharing of data algorithms cohorts across the participating provincial data centers in support of the meta-analysis. ResultsThe successful completion of the final data analysis underscores the effectiveness of a unified data access coordination center for researchers seeking multi-regional health data in Canada. By highlighting advancements enabled by the central coordinating center and provincial data centers, this submission aims to inform researchers about the current landscape of pan-Canadian research and foster opportunities for future collaboration. ImplicationsSharing insights and lessons from this project emphasizes the advancements facilitated by the central coordinating center and provincial data centers, informing researchers about the potential of pan-Canadian research, and encouraging future collaborative endeavors.

Mirtazapine to alleviate severe breathlessness in patients with COPD or interstitial lung diseases (BETTER-B): an international, multicentre, double-blind, randomised, placebo-controlled, phase 3 mixed-method trial

Breathlessness frequently becomes severe among people with respiratory disease. Mirtazapine, a widely used antidepressant, has shown promise in the modulation of respiratory sensation and the response to it, as well as reducing feelings of panic, which often accompanies breathlessness. We aimed to determine the effectiveness of mirtazapine to alleviate severe persisting breathlessness. This international, multicentre, phase 3, parallel-group, double-blind, randomised, placebo-controlled trial across 16 centres in seven countries (Australia, Germany, Ireland, Italy, New Zealand, Poland, and the UK), recruited adults with chronic obstructive pulmonary disease (COPD), interstitial lung diseases, or both, and grade 3 or 4 of the modified Medical Research Council breathlessness scale. Consenting participants were randomly assigned (1:1) to receive oral mirtazapine or matching placebo for 56 days. Randomisation was by minimisation. The initial mirtazapine dose was 15 mg, escalating to a maximum of 45 mg per day, tapered at treatment end. Participants, caregivers, assessors, and investigators were masked to group assignment. The primary outcome was worst breathlessness in the preceding 24 h measured on a 0-10 numerical rating scale (NRS), at 56 days post-treatment start, with follow-up to 180 days. The primary analysis was performed in the modified intention-to-treat population using multivariable multi-level repeated measures model. This trial was registered with ISRCTN (ISRCTN10487976 and ISRCTN15751764 [Australia and New Zealand]) and EudraCT (2019-002001-21) and is complete. Between Feb 4, 2021 and March 28, 2023, we enrolled 225 eligible participants (148 men and 77 women, 113 to the mirtazapine group and 112 to the placebo group). The median age was 74 years (IQR 67-78). No evidence of a difference was found in worst breathlessness at day 56 between mirtazapine and placebo (difference in adjusted mean NRS score was 0·105 [95% CI -0·407 to 0·618]; p=0·69). Although the study was underpowered, the primary endpoint effect did not reach the pre-specified treatment effect of 0·55 for worst breathlessness score reduction that the study was powered to detect for the primary analysis. There were 215 adverse reactions in 72 (64%) of 113 participants in the mirtazapine group versus 116 in 44 (40%) of 110 participants in the placebo group; 11 serious adverse events in six (5%) participants in the mirtazapine group versus eight in seven (6%) participants in the placebo group; and one (1%) suspected unexpected serious adverse reaction in the mirtazapine group. At day 56, there were three deaths in the mirtazapine group and two deaths in the placebo group. At day 180, there were seven deaths in the mirtazapine group and 11 deaths in the placebo group. Our findings suggested that mirtazapine of doses 15 to 45 mg daily over 56 days does not improve severe breathlessness among patients with COPD or interstitial lung diseases and might cause adverse reactions. Based on these findings, we do not recommend mirtazapine as a treatment to alleviate severe breathlessness. EU Horizon 2020 (grant agreement No. 825319); Cicely Saunders International Breathlessness Programme; National Institute for Health and Care Research Applied Research Collaboration South London; Australian National Health and Medical Research Council-EU (application ID: APP1170731).

Exploring healthcare workers’ perceptions of child health research at Kamuzu Central Hospital, Malawi: an interpretative phenomenological analysis

BackgroundChildren’s health is a global public health priority and a determinant of development and sustainability. Its effective delivery and further improvements require constant and dedicated research on children, especially by child healthcare workers (HCWs). Studies have shown a high involvement of child HCWs from developed countries in child health research, with an under-representation from the global south in authorship and leadership in international collaborations. To our knowledge, there is very little literature on challenges faced by child HCWs in Malawi in conducting child health research. We sought to explore the lived experiences of child HCWs at Kamuzu Central Hospital (KCH) in Malawi by examining their perceptions of child health research and assessing the availability of child health research opportunities.MethodsFrom July 2023 to August 2023, we conducted five key informant interviews with purposively sampled policymakers and 20 in-depth interviews with child HCWs at KCH. The interviews were conducted in English, audio-recorded, and transcribed verbatim. We utilised interpretative phenomenological analysis by reviewing initial transcripts for familiarity, generating codes manually, and refining them into broader themes through comparisons and iterative processes.ResultsThe analysis revealed three main themes on perceptions of child HCWs at KCH in child health research. These are (i) perceived motivation and challenges for engaging in child health research, (ii) perceptions of resource availability and research opportunities at KCH, and (iii) perceptions of gaps in research training and participation among child HCWs.ConclusionsOur study has uncovered critical factors influencing the low participation of child HCWs in child health research at KCH. Lack of collaboration, limited financial opportunities, and non-research-based training were the key barriers to participation in child health research among child HCWs at KCH. We advocate for the inclusion of child HCWs at all stages of collaborative health research, transparency on funding opportunities for child health research, and inclusion of research in the training of HCWs. These initiatives can strengthen the participation of child HCWs in child health research and ultimately enhance child health outcomes in Malawi.

Reflecting on the quality of a methodologically pluralist evaluation of a large-scale Indigenous health research collaboration in Australia

BackgroundIndigenous communities worldwide lead calls for all evaluations of research, programmes and policies affecting their communities to reflect the values, priorities and perspectives of the Indigenous peoples and communities involved....

An auto-ethnographic study of co-produced health research in a patient organisation: unpacking the good, the bad, and the unspoken

BackgroundIn rare diseases, limited access to services and rare disease experts may force families to act as medical advocates for their child; they can volunteer to support clinician-initiated research or initiate and lead research themselves. Ketotic Hypoglycemia International (KHI) is a new, global organization for families affected by idiopathic ketotic hypoglycemia (IKH) and is run solely by volunteers. Doing research together, families and international experts in a collaborative process such as at KHI, also referred to as patient and public involvement and engagement (PPIE) or extreme citizen science, is often praised for its positive effects on the research and the stakeholders involved.MethodsWe used auto-ethnographic narratives from parents and medical professionals in KHI to report on their experiences with co-produced health research. All co-authors wrote down their experiences in relation to three topics: time invested, work invested and power dynamics.ResultsWhilst the parents and health care professionals felt a new hope for (their) children with IKH, they also felt pressure to contribute time or to be flexible in how and when they dedicated time towards the organization. The power dynamics were characterised by a change in the relationship between the parents and medical experts; the parent being taught by the expert shifted to the expert learning from the lived experience of the parent. Both parents and medical experts struggled with maintaining boundaries and safeguarding their mental health.ConclusionOur findings call for the need to secure and prioritize funding for patient organizations, to enable them to create the sustainable architecture required for meaningful PPIE within these organizations. The morals and often deeply personal reasons for engaging with voluntary work in health research, can lead to overstepping of boundaries. As a result of our research, we call for the development of ethics of care guidelines within collaborative health research.

Sepsis Research Using Omics Technology in the European Union and the United Kingdom: Maps, Trends, and Future Implications.

High-throughput omics technologies have become valuable tools for systems science research and clinical management of sepsis. This article analyzes sepsis research using omics technologies in the European Union (EU) and the United Kingdom from 1990 to May 2023 using bibliometric data from the Web of Science database. Using VOSviewer for network analysis, we examined the distribution patterns, funding characteristics, and collaborations among the states, noting trends of convergence and divergence. The analysis included 2078 articles, revealing an increasing rate of publications on sepsis research using omics approaches. The United Kingdom's research output is notably high, contributing 28.3% of the total research from the EU and United Kingdom combined. Germany, France, the Netherlands, and Italy together account for 56.9% of the publications from the EU member states. The United States is the leading international collaborator, particularly with the United Kingdom, followed by Germany and France. The EU-15 countries have significantly more publication outputs in this domain with growing but limited inclusion of the newer members of the EU. We suggest that the role of EU member states and the United Kingdom in sepsis research using omics technologies can be advanced by facilitating high-value, technology-driven health research, fostering collaboration, convergence, and equity in global health and biomedical research.

A proposed guide to reducing bias and improving assessments of decolonization in global health research

IntroductionThe movement to decolonize global health encompasses efforts to dismantle historically inequitable structures and processes in global health research, education, and practice. However, despite increasing literature on the decolonization of global health, gaps between action and knowledge exist in assessments of knowledge production. In this Perspective, we will outline potential biases in current approaches to assessing knowledge production and propose a systems-focused guide to improve the interrogation of knowledge production in this field.MethodsWe leverage the “Inner Setting” and “Outer Setting” domains of the Consolidated Framework for Implementation Research (CFIR), a well-established, commonly-used implementation science framework to critically assess the status quo of decolonization and to develop criteria to help guide decolonization efforts in academic contexts. We defined the Inner Setting as academic and research institutions leading and participating in global health research collaborations, and the Outer Setting as the funding, editorial, and peer review policies and practices that influence knowledge production in global health. Research institutions in the Inner organizational domain continually interact with the Outer policy domains. We categorize the levels at which decolonization may occur and where action should be focused as follows: (1) North–South, (2) South–South, (3) Local South, and (4) Local North. Using CFIR domains and the levels of action for decolonization, we propose a multi-level guide to improve on the standardization, granularity, and accuracy of decolonization assessments in global health research.Conclusion and expected impactThe proposed guide is informed by our global health research expertise and experiences as African scientists with extensive exposure in both global North and global South research contexts. We expect that the proposed guide will help to identify and address the biases identified and will lead to better knowledge-driven action in the process of decolonizing global health research.

Applying Team Science to Collaborative Digital Health Research: Learnings from the Wearable Clinic.

Collaboration across disciplinary boundaries is vital to address the complex challenges and opportunities in Digital Health. We present findings and experiences of applying the principles of Team Science to a digital health research project called 'The Wearable Clinic'. Challenges faced were a lack of shared understanding of key terminology and concepts, and differences in publication cultures between disciplines. We also encountered more profound discrepancies, relating to definitions of "success" in a research project. We recommend that collaborative digital health research projects select a formal Team Science methodology from the outset.

Maternal and fetal factors associated with stillbirth in singleton pregnancies in 13 hospitals across six states in India: A prospective cohort study.

This study aimed to investigate the incidence of and risk factors for stillbirth in an Indian population. We conducted a secondary data analysis of a hospital-based cohort from the Maternal and Perinatal Health Research collaboration, India (MaatHRI), including pregnant women who gave birth between October 2018-September 2023. Data from 9823 singleton pregnancies recruited from 13 hospitals across six Indian states were included. Univariable and multivariable Poisson regression analysis were performed to examine the relationship between stillbirth and potential risk factors. Model prediction was assessed using the area under the receiver-operating characteristic (AUROC) curve. There were 216 stillbirths (48 antepartum and 168 intrapartum) in the study population, representing an overall stillbirth rate of 22.0 per 1000 total births (95% confidence interval [CI]: 19.2-25.1). Modifiable risk factors for stillbirth were: receiving less than four antenatal check-ups (adjusted relative risk [aRR]: 1.75, 95% CI: 1.25-2.47), not taking any iron and folic acid supplementation during pregnancy (aRR: 7.23, 95% CI: 2.12-45.33) and having severe anemia in the third trimester (aRR: 3.37, 95% CI: 1.97-6.11). Having pregnancy/fetal complications such as hypertensive disorders of pregnancy (aRR: 1.59, 95% CI: 1.03-2.36), preterm birth (aRR: 4.41, 95% CI: 3.21-6.08) and birth weight below the 10th percentile for gestational age (aRR: 1.35, 95% CI: 1.02-1.79) were also associated with an increased risk of stillbirth. Identified risk factors explained 78.2% (95% CI: 75.0%-81.4%) of the risk of stillbirth in the population. Addressing potentially modifiable antenatal factors could reduce the risk of stillbirths in India.

MULTILINEAGE DIFFERENTIATION OF C2C12 CELLS AND MONOCYTES IN VITRO WITHIN A 6-BROMOINDIRUBIN-3’-OXIME-INCORPORATED CHITOSAN-BASED SCAFFOLD FOR ENHANCED BONE REGENERATION

Critical size bone defects deriving from large bone loss are an unmet clinical challenge1. To account for disadvantages with clinical treatments, researchers focus on designing biological substitutes, which mimic endogenous healing through osteogenic differentiation promotion. Some studies have however suggested that this notion fails to consider the full complexity of native bone with respect to the interplay between osteoclast and osteoblasts, thus leading to the regeneration of less functional tissue2. The objective of this research is to assess the ability of our laboratory's previously developed 6-Bromoindirubin-3’-Oxime (BIO) incorporated guanosine diphosphate crosslinked chitosan scaffold in promoting multilineage differentiation of myoblastic C2C12 cells and monocytes into osteoblasts and osteoclasts1, 3, 4. BIO addition has been previously demonstrated to promote osteogenic differentiation in cell cultures5, but implementation of a co-culture model here is expected to encourage crosstalk thus further supporting differentiation, as well as the secretion of regulatory molecules and cytokines2.Biocompatibility testing of both cell types is performed using AlamarBlue for metabolic activity, and nucleic acid staining for distribution. Osteoblastic differentiation is assessed through quantification of ALP and osteopontin secretion, as well as osteocalcin and mineralization staining. Differentiation into osteoclasts is verified using SEM and TEM, qPCR, and TRAP staining.Cellular viability of C2C12 cells and monocytes was maintained when cultured separately in scaffolds with and without BIO for 21 days. Both scaffold variations showed a characteristic increase in ALP secretion from day 1 to 7, indicating early differentiation but BIO-incorporated sponges yielded higher values compared to controls. SEM and TEM imaging confirmed initial aggregation and fusion of monocytes on the scaffold's surface, but BIO addition appeared to result in smoother cell surfaces indicating a change in morphology. Late-stage differentiation assessment and co-culture work in the scaffold are ongoing, but initial results show promise in the material's ability to support multilineage differentiation.Acknowledgements: The authors would like to acknowledge the financial support of the Collaborative Health Research Program (CHRP) through CIHR and NSERC, as well as Canada Research Chair – Tier 1 in Regenerative Medicine and Nanomedicine, and the FRQ-S.

Remote and Equitable Inductive Analysis for Global Health Teams: Using Digital Tools to Foster Equity and Collaboration in Qualitative Global Health Research via the R-EIGHT Method.

Qualitative methods encompass a variety of research and analysis techniques which have the common aim of uncovering what cannot be captured numerically through the quantification of data. For qualitative analytical methods in the interpretivist tradition (e.g. grounded theory, phenomenological, thematic, etc), inductive coding has become a mainstay but has not always lent itself to collaborative, remote team-based data interpretation among qualitative and mixed-methods clinical researchers. Finding ways to speed the inductive coding process without sacrificing rigour while remaining accessible to geographically dispersed teams remains a priority. This is especially crucial in global health partnerships where on-the-ground researchers may have less input into codebook development compared to in-the-office researchers. We describe a newly-developed, digital approach that integrates findings from our qualitative team, which we call R-EIGHT (Remote and Equitable Inductive Analysis for Global Health Teams). The technique we developed a) speeds the process of inductive coding as a team, b) visually displays interpretive consensus, and c) when appropriate fosters streamlined integration of inductive findings into codebooks. Because it involves all team members, our approach helps break the divide between in-office and on-the-ground teams, fostering integrated and representative contributions from all globally-dispersed team members.