Analysis of funding landscape for health policy and systems research in the Eastern Mediterranean Region: A scoping review of the literature over the past decade.

BACKGROUND: Health policy and systems research (HPSR) can strengthen health systems and improve population health outcomes. In the Eastern Mediterranean Region (EMR), there is limited recognition of the importance of HPSR and funding remains the main challenge. This study seeks to: (1) assess the reporting of funding in HPSR papers published between 2010 and 2022 in the EMR, (2) examine the source of funding in the published HPSR papers in the EMR and (3) explore variables influencing funding sources, including any difference in funding sources for coronavirus disease 2019 (COVID-19)-related articles. METHODS: We conducted a rapid scoping review of HPSR papers published between 2010 and 2022 (inclusively) in the EMR, addressing the following areas: reporting of funding in HPSR papers, source of funding in the published HPSR papers, authors' affiliations and country of focus. We followed the Joanna Briggs Institute (JBI) guidelines for conducting scoping reviews. We also conducted univariate and bivariate analyses for all variables at 0.05 significance level. RESULTS: Of 10,797 articles screened, 3408 were included (of which 9.3% were COVID-19-related). More than half of the included articles originated from three EMR countries: Iran (n = 1018, 29.9%), the Kingdom of Saudi Arabia (n = 595, 17.5%) and Pakistan (n = 360, 10.6%). Approximately 30% of the included articles did not report any details on study funding. Among articles that reported funding (n = 1346, 39.5%), analysis of funding sources across all country income groups revealed that the most prominent source was national (55.4%), followed by international (41.7%) and lastly regional sources (3%). Among the national funding sources, universities accounted for 76.8%, while governments accounted for 14.9%. Further analysis of funding sources by country income group showed that, in low-income and lower-middle-income countries, all or the majority of funding came from international sources, while in high-income and upper-middle-income countries, national funding sources, mainly universities, were the primary sources of funding. The majority of funded articles' first authors were affiliated with academia/university, while a minority were affiliated with government, healthcare organizations or intergovernmental organizations. We identified the following characteristics to be significantly associated with the funding source: country income level, the focus of HPSR articles (within the EMR only, or extending beyond the EMR as part of international research consortia), and the first author's affiliation. Similar funding patterns were observed for COVID-19-related HPSR articles, with national funding sources (78.95%), mainly universities, comprising the main source of funding. In contrast, international funding sources decreased to 15.8%. CONCLUSION: This is the first study to address the reporting of funding and funding sources in published HPSR articles in the EMR. Approximately 30% of HPSR articles did not report on the funding source. Study findings revealed heavy reliance on universities and international funding sources with minimal role of national governments and regional entities in funding HPSR articles in the EMR. We provide implications for policy and practice to enhance the profile of HPSR in the region.

Can PPI be used to improve epistemic justice in health research for marginalised groups?

BACKGROUND: The principle of epistemic justice (EJ) recognises the need for a person's voice to be both heard (testimonial) and understood (hermeneutic) in the generation of meaning. Funding bodies now require all research to have embedded patient and public involvement (PPI) - an active partnership between patients, carers, and the public with researchers, which influences and shapes research. AIM: Current PPI initiatives potentially enable testimonial justice - ensuring voices are heard. But do they adequately support hermeneutical justice? METHOD: First, a scoping review of published PPI guidance was carried out to describe a current best-practice framework. The framework was then critically reviewed using key concepts described by an EJ understanding of optimising healthcare research for marginalised groups, to consider the potential role of current PPI guidance in supporting epistemically just health research. RESULTS: Analysis is ongoing, but the study's findings describe whether and how current PPI guidelines support and enable the voice of marginalised patient groups to not only be included in research but also to have meaningful impact, including what factors enable and disable tailored care. CONCLUSION: This study suggests ways in which current PPI methods can be used to best advantage. The authors' ongoing research is discussed to understand further how EJ concepts might help shape the future of PPI in health research.

Involvement of children and young people in the conduct of health research: A rapid umbrella review.

BACKGROUND: Patient and public involvement and engagement (PPIE) have long been considered important to good research practice. There is growing, yet diverse, evidence in support of PPIE with children and young people (CYP). We must now understand the various approaches to involvement of CYP in research. AIMS: This rapid umbrella review aimed to provide an overview of when, how and to what extent CYP are involved in the conduct of health research, as well as the reported benefits, challenges, and facilitators of involvement. METHODS: We searched OVID Medline, Embase and PubMed. Published reviews were included if they reported meaningful involvement of CYP in the conduct of health research. Extracted data were synthesised using thematic analysis. RESULTS: The 26 reviews included were predominately systematic and scoping reviews, published within the last decade, and originating from North America and the United Kingdom. CYPs were involved in all stages of research across the literature, most commonly during research design and data collection, and rarely during research funding or data sharing and access. Researchers mostly engaged CYP using focus groups, interviews, advisory panels, questionnaires, and to a lesser extent arts-based approaches such as photovoice and drawing. Visual and active creative methods were more commonly used with children ≤12 years. The evidence showed a shared understanding of the benefits, challenges, and facilitators for involvement of CYP, such as time and resource commitment and building partnership. CONCLUSION: Overall, the review identified consistency in the range of methods and approaches used, and stages of research with which CYP are commonly involved. There is a need for more consistent reporting of PPIE in the literature, both in terminology and detail used. Furthermore, the impact of approaches to CYP involvement on research and community outcomes must be better evaluated. PATIENT/PUBLIC CONTRIBUTION: This review forms part of broader research initiatives being led by the authors. Together, these projects aim to support embedding of child voices in research practice and to explore the desirability and suitability of Young Persons Advisory Groups within birth cohort studies. The findings from this review, alongside public and stakeholder consultation, will inform development of resources such as practice recommendations to guide future involvement of CYP in health research undertaken at the author's respective institutions.

Exploring the sustainable impacts of a clinical healthcare research scholarship programme.

BACKGROUND: The NHS is the first public body globally to commit to net zero. AIM: This study aimed to explore the environmental sustainability impact of a hospital scholarship programme. METHOD: A sustainable quality improvement value framework was used to measure the programme's environmental, social and financial effects. RESULTS: The social impact through face-to-face contact was most valued by scholars; there were also savings in carbon emissions and costs. DISCUSSION: Training in sustainability is essential for the workforce but little infrastructure and expertise are available within organisations to support staff to provide sustainable healthcare in day-to-day practice. CONCLUSION: Sustainable healthcare should be supported by education and national guidance and implementation plans should be drawn up to this end. The social impact of the framework used is often seen as less important than its environmental and financial components; however, as its value to scholars illustrates, the components are intertwined and should be considered of equal importance.

Evaluating the process of practice enhancement for exclusive breastfeeding (PEEB): a participatory action research approach for clinical innovation.

BACKGROUND: Despite the known benefits of exclusive breastfeeding, global rates remain below recommended targets, with Ireland having one of the lowest rates in the world. This study explores the efficacy of Participatory Action Research (PAR) and Work-Based Learning Groups (WBLGs) to enhance breastfeeding practices within Irish healthcare settings from the perspective of WBLG participants and facilitators. METHODS: Employing a PAR approach, interdisciplinary healthcare professionals across maternity, primary, and community care settings (n = 94) participated in monthly WBLGs facilitated by three research and practice experts. These sessions, conducted over nine months (November 2021 - July 2022), focused on critical reflective and experiential learning to identify and understand existing breastfeeding culture and practices. Data were collected through participant feedback, facilitator notes, and reflective exercises, with analysis centered on participant engagement and the effectiveness of WBLGs. This approach facilitated a comprehensive understanding of breastfeeding support challenges and opportunities, leading to the development of actionable themes and strategies for practice improvement. RESULTS: Data analysis from WBLG participants led to the identification of five key themes: Empowerment, Ethos, Journey, Vision, and Personal Experience. These themes shaped the participants' meta-narrative, emphasising a journey of knowledge-building and empowerment for breastfeeding women and supporting staff, underlining the importance of teamwork and multidisciplinary approaches. The project team's evaluation highlighted four additional themes: Building Momentum, Balancing, Space Matters, and Being Present. These themes reflect the dynamics of the PAR process, highlighting the significance of creating a conducive environment for discussion, ensuring diverse engagement, and maintaining energy and focus to foster meaningful practice changes in breastfeeding support. CONCLUSION: This study highlights the potential of WBLGs and PAR to enhance the understanding and approach of healthcare professionals towards breastfeeding support. By fostering reflective and collaborative learning environments, the study has contributed to a deeper understanding of the challenges in breastfeeding support and identified key areas for improvement. The methodologies and themes identified hold promise to inform future practice and policy development in maternal and child health.

Continue nursing education: an action research study on the implementation of a nursing training program using the Holton Learning Transfer System Inventory.

OBJECTIVE: To address the gap in effective nursing training for quality management, this study aims to implement and assess a nursing training program based on the Holton Learning Transfer System Inventory, utilizing action research to enhance the practicality and effectiveness of training outcomes. METHODS: The study involved the formation of a dedicated training team, with program development informed by an extensive situation analysis and literature review. Key focus areas included motivation to transfer, learning environment, and transfer design. The program was implemented in a structured four-step process: plan, action, observation, reflection. RESULTS: Over a 11-month period, 22 nurses completed 14 h of theoretical training and 18 h of practical training with a 100% attendance rate and 97.75% satisfaction rate. The nursing team successfully led and completed 22 quality improvement projects, attaining a practical level of application. Quality management implementation difficulties, literature review, current situation analysis, cause analysis, formulation of plans, implementation plans, and report writing showed significant improvement and statistical significance after training. CONCLUSION: The study confirms the efficacy of action research guided by Holton's model in significantly enhancing the capabilities of nursing staff in executing quality improvement projects, thereby improving the overall quality of nursing training. Future research should focus on refining the training program through long-term observation, developing a multidimensional evaluation index system, exploring training experiences qualitatively, and investigating the personality characteristics of nurses to enhance training transfer effects.

Realist Approach to Social Policies (RASP) study to reduce socioeconomic health inequalities through systems change: protocol for a research project combining mixed-methods realist research with institutional action research.

INTRODUCTION: Health inequalities are rooted in inequality in vital resources for health, including financial resources, a supportive informal network, a stable living situation, work or daytime activities or education and literacy. About 25% of Dutch citizens experience deprivation of such resources. Social policy consists of crucial instruments for improving resources in those groups but can also have adverse effects and lead to additional burdens. This project aims to contribute to the reduction of health inequalities through (1) a better understanding of how social policy interventions can contribute to reducing health inequality through the redistribution of burdens and resources and (2) developing anticipatory governance strategies to implement those insights, contributing to a change in social policy systems. METHODS AND ANALYSIS: Two systems approaches are combined for establishing a systems change in the Netherlands. First, a realist approach enables insights into what in social policy interventions may impact health outcomes, for whom and under what circumstances. Second, an institutional approach enables scaling up these insights, by acknowledging the crucial role of institutional actors for accomplishing a systems change. Together with stakeholders, we perform a realist review of the literature and identify existing promising social policy interventions. Next, we execute mixed-methods realist evaluations of selected social policy interventions in seven municipalities, ranging from small, mid-size to large, and in both urban and rural settings. Simultaneously, through action research with (national) institutional actors, we facilitate development of anticipatory governance strategies. ETHICS AND DISSEMINATION: This study is not liable to the Medical Research Involving Subjects Act (WMO). Informed consent to participate in the study is obtained from participants for the use of all forms of personally identifiable data. Dissemination will be codeveloped with target populations and includes communication materials for citizens, education materials for students, workshops, infographics and decision tools for policy-makers and publications for professionals.

Research circles as a method for implementing new services in the public health and welfare system.

BACKGROUND: Co-creation has become a guiding principle in public service innovation, but more knowledge is still needed on overcoming barriers and increasing the effectiveness of co-creation processes. This study explores the research circle method as a concrete methodology for co-creation, and its application within two cases involving the implementation of new services for drug death-bereaved persons in Norway based on new research-based knowledge. METHOD: The study followed an action research design. The field notes and audio recordings were analysed using reflexive thematic analysis. RESULTS: The analysis identified two key dimensions experienced as important for the implementation of the new services when research circles were used as a method for co-creation: 1) the inclusion of participants from different contexts and 2) support structures for service interventions. DISCUSSION: Research circles are discussed as an important support structure for promoting public value co-creation that can contribute to increasing stakeholders' capacity for implementing services in the public system, especially when the focus is on the perspectives and interests of stakeholders, such as practitioners and management in public health and welfare services. However, the discussion also points to barriers relating to the co-creation process that need to be considered when planning research circle-based interventions.

The use of virtual nominal groups in healthcare research: An extended scoping review.

INTRODUCTION: The Nominal Group Technique (NGT) is a consensus group method used to synthesize expert opinions. Given the global shift to virtual meetings, the extent to which researchers leveraged virtual platforms is unclear. This scoping review explores the use of the vNGT in healthcare research during the COVID-19 pandemic. METHODS: Following the Arksey and O'Malley's framework, eight cross-disciplinary databases were searched (January 2020-July 2022). Research articles that reported all four vNGT stages (idea generation, round robin sharing, clarification, voting) were included. Media Synchronicity Theory informed analysis. Corresponding authors were surveyed for additional information. RESULTS: Of 2,589 citations, 32 references were included. Articles covered healthcare (27/32) and healthcare education (4/32). Platforms used most were Zoom, MS Teams and GoTo but was not reported in 44% of studies. Only 22% commented on the benefits/challenges of moving the NGT virtually. Among authors who responded to our survey (16/32), 80% felt that the vNGT was comparable or superior. CONCLUSIONS: The vNGT provides several advantages such as the inclusion of geographically dispersed participants, scheduling flexibility and cost savings. It is a promising alternative to the traditional in-person meeting, but researchers should carefully describe modifications, potential limitations, and impact on results.

Navigating the challenges of imposter participants in online qualitative research: lessons learned from a paediatric health services study.

BACKGROUND: The growth in online qualitative research and data collection provides several advantages for health service researchers and participants, including convenience and extended geographic reach. However, these online processes can also present unexpected challenges, including instances of participant fraud or scam behaviour. This study describes an incident of participant fraud identified during online focus group discussions and interviews for a PhD health services research project on paediatric neurodevelopmental care. METHODS: We aimed to recruit carers of Australian children with neurodevelopmental disorders. Potential participants were recruited via a publicly available social media advert on Facebook offering $50 AUD compensation. Those who expressed interest via email (n = 254) were sent a pre-interview Qualtrics survey to complete. We identified imposters at an early stage via inconsistencies in their self-reported geographical location and that captured by the survey as well as recognition of suspicious actions before, during and after focus group discussions and interviews. RESULTS: Interest in participation was unexpectedly high. We determined that all potential participants were likely imposters, posing as multiple individuals and using different IP addresses across Nigeria, Australia, and the United States. In doing so, we were able to characterise several "red flags" for identifying imposter participants, particularly those posing as multiple individuals. These comprise a combination of factors including large volumes and strange timings of email responses, unlikely demographic characteristics, short or vague interviews, a preference for nonvisual participation, fixation on monetary compensation, and inconsistencies in reported geographical location. Additionally, we propose several strategies to combat this issue such as providing proof of location or eligibility during recruitment and data collection, examining email and consent form patterns, and comparing demographic data with regional statistics. CONCLUSIONS: The emergent risk of imposter participants is an important consideration for those seeking to conduct health services research using qualitative approaches in online environments. Methodological design choices intended to improve equity and access for the target population may have an unintended consequence of improving access for fraudulent actors unless appropriate risk mitigation strategies are also employed. Lessons learned from this experience are likely to be valuable for novice health service researchers involved in online focus group discussions and interviews.

Applying systems thinking in youth-centred participatory action research for health promotion in an underserved neighbourhood.

Purpose: Childhood overweight is considered a complex problem influenced by a range of factors, including energy balance-related behaviours (EBRBs) and interacting drivers of these behaviours. There is growing support that applying a systems approach is required to tackle complex problems resulting in actions that attempt to change the system's dynamics. Additionally, a participatory approach is advocated to include the lived experience of the population of interest both in the understanding of the system as well as the development, implementation and evaluation of relevant actions. We therefore combined Intervention Mapping, Participatory Action Research (PAR) and system dynamics in the development, implementation and evaluation of actions contributing to healthy EBRBs together with adolescents. Methods: Four PAR groups comprising of 6-8 adolescent co-researchers (10-14 years) and 1-2 adult facilitators met weekly during 3-4 years. The structured Intervention Mapping protocol guided the process of the systematic development, implementation and evaluation of actions. System dynamics tools were included for the creation of Causal Loop Diagrams and development of systemic actions. Results: Our approach comprised six steps that were executed by the PAR groups: (1) build Causal Loop Diagrams for each EBRB through peer research and identify overarching mechanisms, (2) determine leverage points using the Intervention Level Framework, (3) develop action ideas, (4) develop detailed actions including an implementation plan, (5) implement and, (6) evaluate the actions. PAR ensured that the actions fitted the lived experience of the adolescents, whilst system dynamics promoted actions at different levels of the system. The Intervention Mapping protocol ensured that the actions were theory-based. The main challenge involved integrating system dynamics within our practise in cooperation with adolescent co-researchers. Conclusion: We experienced that combining Intervention Mapping, PAR and system dynamics worked well in developing, implementing and evaluating actions that target different levels of the system that drive adolescents' EBRBs. This study serves as an example to other studies aimed at developing, implementing and evaluating actions using a participatory and systems approach.

Role of coproduction in the sustainability of innovations in applied health and social care research: a scoping review.

BACKGROUND: Innovations such as toolkits and frameworks are developed through applied health and social care research, to address identified gaps in quality or safety of care. The intention is to subsequently implement these innovations into practice to bring about improvements. Challenges can arise from poor choice of implementation strategies or lack of alignment to local contexts. Research has identified the importance of involving and engaging patients, health professionals and other stakeholders in the design and delivery of the underpinning research, and in informing subsequent implementation. However, how and why such coproduction influences the sustainability of innovations in health and social care is unclear. OBJECTIVE: The objective of this scoping review is to identify and present the available evidence regarding the role of coproduction in the sustainability of innovations in applied health and social care research. INCLUSION CRITERIA: This scoping review includes papers related to the role of coproduction in the sustainability of innovations in applied health and social care research published in peer-reviewed journals. The review is limited to articles reporting applied health and social care research conducted in the United Kingdom. METHODS: Scopus, Web of Science, CINAHL and MEDLINE were searched for studies. Titles and abstracts were screened by two independent reviewers for assessment against the inclusion criteria, followed by a full-text review and data extraction. Data were extracted using a data extraction form developed by the reviewers. The completed forms were imported into NVivo and analysed using basic qualitative content analysis. RESULTS: Our review provides insight into the role of coproduction in the sustainability of innovations in applied health and social care research. Our findings highlight that sustainability is a dynamic process, supported by coproduction activities such as ongoing collaborative partnerships; these can be planned for in both the research design and implementation phases of a project.

Overarching Priorities for Health and Care Research in the United Kingdom: A Coproduced Synthesis of James Lind Alliance 'Top 10s'.

INTRODUCTION: James Lind Alliance (JLA) Priority Setting Partnerships (PSPs) produce 'Top 10' lists of health and care research priorities through a structured, shared decision-making process with patients or service users, carers and health or care professionals who identify questions that are most important to them. To date, over 150 PSPs in different areas of health and care have published research priorities. Some PSPs share similar priorities, which could be combined, promoted and addressed through collaborative research to increase value and reduce research waste. AIM: The aim of this study was to identify overarching themes common to JLA PSP priorities across different areas of health and care. METHODS: Our analysis included 'Top 10' research priorities produced by UK-based JLA PSPs between 2016 and 2020. The priorities were coded deductively by the Health Research Classification System (HRCS) health category and research activity. We then carried out online workshops with patients, service users and carers to generate new codes not already captured by this framework. Within each code, multistakeholder inductive thematic analysis was used to identify overarching themes, defined as encompassing priorities from three or more PSPs covering two or more health categories. We used codesign methods to produce an interactive tool for end users to navigate the overarching themes. RESULTS: Five hundred and fifteen research priorities from 51 PSPs were included in our analysis. The priorities together encompassed 20 of 21 HRCS health categories, the most common being 'generic health relevance' (22%), 'mental health' (18%) and 'musculoskeletal' (14%). We identified 89 overarching themes and subthemes, which we organised into a hierarchy with seven top-level themes: quality of life, caregivers and families, causes and prevention, screening and diagnosis, treatment and management, services and systems and social influences and impacts. CONCLUSION: There are many overarching themes common to research priorities across multiple areas of health and care. To facilitate new research and research funding, we have developed an interactive tool to help researchers, funders and patients or service users to explore these priority topics. This is freely available to download online. PATIENT OR PUBLIC CONTRIBUTION: Patients or service users and carers were involved throughout the study, including deciding the aims, designing the study, analysing priorities to identify themes, interpreting and reporting the findings.

[The Medical Informatics Initiative at a glance-establishing a health research data infrastructure in Germany]. / Die Medizininformatik-Initiative im Überblick ­ Aufbau einer Gesundheitsforschungsdateninfrastruktur in Deutschland.

The Medical Informatics Initiative (MII) funded by the Federal Ministry of Education and Research (BMBF) 2016-2027 is successfully laying the foundations for data-based medicine in Germany. As part of this funding, 51 new professorships, 21 junior research groups, and various new degree programs have been established to strengthen teaching, training, and continuing education in the field of medical informatics and to improve expertise in medical data sciences. A joint decentralized federated research data infrastructure encompassing the entire university medical center and its partners was created in the form of data integration centers (DIC) at all locations and the German Portal for Medical Research Data (FDPG) as a central access point. A modular core dataset (KDS) was defined and implemented for the secondary use of patient treatment data with consistent use of international standards (e.g., FHIR, SNOMED CT, and LOINC). An officially approved nationwide broad consent was introduced as the legal basis. The first data exports and data use projects have been carried out, embedded in an overarching usage policy and standardized contractual regulations. The further development of the MII health research data infrastructures within the cooperative framework of the Network of University Medicine (NUM) offers an excellent starting point for a German contribution to the upcoming European Health Data Space (EHDS), which opens opportunities for Germany as a medical research location.

The value of health service-based research to health service organisations: a qualitative study with senior health service executives.

BACKGROUND: Research evidence has demonstrably improved health care practices and patient outcomes. However, systemic translation of evidence into practice is far from optimal. The reasons are complex, but often because research is not well aligned with health service priorities. The aim of this study was to explore the experiences and perspectives of senior health service executives on two issues: (1) the alignment between local research activity and the needs and priorities of their health services, and (2) the extent to which research is or can be integrated as part of usual health care practice. METHODS: In this qualitative study, semi-structured interviews were conducted with senior health leaders from four large health service organisations that are members of Sydney Health Partners (SHP), one of Australia's nationally accredited research translation centres committed to accelerating the translation of research findings into evidence-based health care. The interviews were conducted between November 2022 and January 2023, and were either audio-recorded and transcribed verbatim or recorded in the interviewer field notes. A thematic analysis of the interview data was conducted by two researchers, using the framework method to identify common themes. RESULTS: Seventeen health executives were interviewed, including chief executives, directors of medical services, nursing, allied health, research, and others in executive leadership roles. Responses to issue (1) included themes on re-balancing curiosity- and priority-driven research; providing more support for research activity within health organisations; and helping health professionals and researchers discuss researchable priorities. Responses to issue (2) included identification of elements considered essential for embedding research in health care; and the need to break down silos between research and health care, as well as within health organisations. CONCLUSIONS: Health service leaders value research but want more research that aligns with their needs and priorities. Discussions with researchers about those priorities may need some facilitation. Making research a more integrated part of health care will require strong and broad executive leadership, resources and infrastructure, and investing in capacity- and capability-building across health clinicians, managers and executive staff.

Reflections on the opportunities and challenges of applying experience-based co-design (EBCD) to phase 1 clinical trials in oncology.

BACKGROUND: Experience-Based Co-Design (EBCD) is a multi-stage participatory action research process which was developed originally to increase patient involvement in service improvement initiatives. This viewpoint article serves as a reflection on the researchers' experiences, focusing on the application and feasibility of participatory approaches, particularly co-design, in the specific context of early-phase clinical trials. METHODS: We reflect on the opportunities and challenges of applying EBCD in a new context of early-phase clinical trials in oncology where experimental treatments are increasingly perceived as a therapeutic option and, in certain instances, their efficacy may lead to accelerated approval facilitating a swifter integration into standard care. RESULTS: We propose that the opportunity of applying EBCD in such trials lies in improving the delivery of person-centered care, care coordination, and support during the transition from experimental to standard care. Three potential challenges when applying EBCD in early-phase clinical trials are discussed related to: the need for standardization in trial processes; planning EBCD in a context of high uncertainty; and vulnerability of patient populations. CONCLUSION: Integrating EBCD into early-phase oncology trials presents an opportunity to enhance person-centered care and can lead to simultaneous improvements in care processes and therapeutic development. PATIENT OR PUBLIC CONTRIBUTION: This article has been developed with the collaboration of a patient partner who serves on the advisory board of our ongoing EBCD study in early clinical trials.