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Background: The translation of research into healthcare practice relies on effective communication between disciplines, however strategies to address the gap between information sharing and knowledge transfer are still under exploration. Communities of Practice (CoP) are informal networks of stakeholders with shared knowledge or endeavour and present an opportunity to address this gap beyond disciplinary boundaries. However, the evidence-base supporting their development, implementation and efficacy in health is not well described. This review explores the evidence underpinning the use of CoP in health research and translation. Methods: A scoping review was undertaken using Arksey and O'Malley's methodological framework. A comprehensive search of health databases and grey literature was performed using keywords and controlled vocabulary. Studies were not restricted by date or research method. Results: A total of 1355 potentially relevant articles were identified through the global search strategy. Following screening, six articles were retained for analysis. Included studies were published between 2002 and 2013 in the United Kingdom (n = 3), Canada (n = 2) and Italy (n = 1). Three papers reported primary research; one used a quantitative methodology, one a qualitative, and one a descriptive evaluation approach. The three remaining papers explored seminal and evolving theories of CoP in the context of knowledge transfer and translation to the health sector. Conclusions: A paucity of evidence exists regarding the development and efficacy of CoP in health research and translation. Further empirical research is required to determine if communities of practice can enhance the translation of research into clinical practice. [ABSTRACT FROM AUTHOR]

The application of both Indigenous and Western knowledge systems in research may provide a well-rounded understanding of health, illness, and wellbeing for Indigenous communities in colonised societies. While many researchers have used a dual approach to researching Indigenous communities in colonised societies, tensions continue to exist around the use of Indigenous and Western ways of knowing together. There are also ongoing tensions between Indigenous methodologies and ethics processes rooted in Western understandings of research. Kaupapa Māori research is an Indigenous Māori approach to research that is about being Māori, is connected to Māori philosophy, culture and knowledge, and centres priorities for Māori. Grounded theory is a Western scientific approach to produce a theory grounded in qualitative data. This paper presents a novice researcher's reflections on using kaupapa Māori research and grounded theory to explore the relational aspects of acute health care in Aotearoa, New Zealand. The research design attempts to utilise the ethics of kaupapa Māori research and the essential methods of grounded theory to develop a research approach that is robust and culturally appropriate. Conforming to conventional Western science-based research methods while endeavouring to privilege Indigenous realities is challenging and, at times, impossible. However, grounded theory can be flexible enough to adapt to the ethics of kaupapa Māori research. Research at the interface between Indigenous and Western knowledge systems presents opportunities for innovation in research design and can provide an ethical foundation for conducting research with Indigenous communities. [ABSTRACT FROM AUTHOR]

German philosopher Hans-Georg Gadamer is best known for his contribution to the development of philosophical hermeneutics, an interpretive approach to knowledge, understanding and meaning-making. It has become a well-established research approach in the health sciences to shed light on the lived experiences of people living with challenging chronic health conditions. Some feminist scholars have gravitated to Gadamer's hermeneutics for its steadfast rejection of positivism and its intention to uncover preunderstandings and prejudices. However, others have critiqued the approach for its lack of focus on prescribing action for social change and its reluctance to evaluate the prejudices present in its own tradition. In this paper, the authors will demonstrate how using feminist hermeneutics can help health researchers deepen their understanding of illness narratives by examining the power structures contributing to the marginalization of chronically ill people within and outside the healthcare system. They will juxtapose a reflexive investigation of the first author's experiences with a focused literature review of the dialogue between hermeneutics and feminism. By examining the first author's experiences with Gadamerian hermeneutics and feminist hermeneutics through self-study, she can in turn unearth her own preunderstandings. This approach will allow the authors to leverage the depth of interpretive understanding generated by hermeneutics while exploring the power structures involved in the complex process that is patient care, particularly that of people with chronic illness. They conclude that this combined approach of feminist hermeneutics allows health researchers to deepen their understanding of illness narratives with issue-specific and effective recommendations to clinicians and public health officials, leading to better-adapted services through a more just approach to chronically ill people. [ABSTRACT FROM AUTHOR]

African development is defined by a number of meta-trends, including climate disruption, digitalisation, informalisation, regionalisation and most recently the impacts of the coronavirus disease 2019 (COVID-19) pandemic. The paper under consideration here is informed primarily by two of these: regionalism and the COVID-19 pandemic. Africa, or at least parts of it, have been severely affected by pandemics in recent decades. At the same time deepening regionalisation allows for more coordinated and effective actions to mitigate their worst effects. However, to date, regional integration efforts have not generally delivered desired results, and in the area of Health Science Research (HSciR) specifically, which is the area of focus for this paper. This important paper considers the nature of current activities in relation to health research by regional organizations on the continent. It provides a baseline study and incipient manifesto for increased effectiveness and greater contribution in the area of HSciR on the continent. [ABSTRACT FROM AUTHOR]

Purpose: Social media has led to fundamental changes in the way that people look for and share health related information. There is increasing interest in using this spontaneously generated patient experience data as a data source for health research. The aim was to summarise the state of the art regarding how and why SGOPE data has been used in health research. We determined the sites and platforms used as data sources, the purposes of the studies, the tools and methods being used, and any identified research gaps.Methods: A scoping umbrella review was conducted looking at review papers from 2015 to Jan 2021 that studied the use of SGOPE data for health research. Using keyword searches we identified 1759 papers from which we included 58 relevant studies in our review.Results: Data was used from many individual general or health specific platforms, although Twitter was the most widely used data source. The most frequent purposes were surveillance based, tracking infectious disease, adverse event identification and mental health triaging. Despite the developments in machine learning the reviews included lots of small qualitative studies. Most NLP used supervised methods for sentiment analysis and classification. Very early days, methods need development. Methods not being explained. Disciplinary differences - accuracy tweaks vs application. There is little evidence of any work that either compares the results in both methods on the same data set or brings the ideas together.Conclusion: Tools, methods, and techniques are still at an early stage of development, but strong consensus exists that this data source will become very important to patient centred health research. [ABSTRACT FROM AUTHOR]

Background: While there has been a long recognition of the importance of race equality in health and care research, there is a lack of sustained action among research funding and research performing organisations to address racial equality in public involvement. This paper describes how the UK's National Institute for Health and Care Research (NIHR) convened a Race Equality Public Action Group (REPAG), which co-developed with public contributors and stakeholders a Race Equality Framework – a tool for addressing racial equality in public involvement. Methods: The REPAG, through meetings and discussions, defined the focus of the Framework, and developed an initial draft of the Framework. Public contributors identified the need for broader consultation with other public members. Three community consultation events with a total of 59 members of Black African-, Asian- and Caribbean-heritage communities were held to seek their views on health and care research generally and on the draft Framework specifically. The draft Framework was modified and piloted among 16 organisations delivering health and care research. Following feedback from the pilot, the Framework was modified and prepared for publication. Results: The Framework is designed as a self-assessment tool comprised of 50 questions pertaining to five domains of organisational activity: 1) individual responsibility, 2) leadership, 3) public partnerships, 4) recruitment, and 5) systems and processes. The questions were co-designed with REPAG public members and provide key concepts and elements of good practice that organisations should consider and address on their path to achieving racial competence. The accompanying materials provide implementation guidance with 20 detailed steps, case studies of actions taken in seven pilot organisations, and links to additional resources. The pilot demonstrated the feasibility of conducting a meaningful self-assessment over a period of three months and the usefulness of the results for developing longer-term action plans. Conclusion: The Framework represents the first self-assessment tool for addressing racial equality in public involvement. Co-design with REPAG public members enhanced its authenticity and practicality. Organisations in the field of health and care research and any other organisations that use partnerships with the public are encouraged to adopt the Framework. Plain English summary: For a long time, race equality within research has not been a priority. To address this the NIHR created a group to come up with solutions to tackle this – the Race Equality Public Action Group. Recognising the need to help research organisations with how they involved members of the public from diverse groups, the Race Equality Framework was born. The Race Equality Framework was devised to help organisations become more inclusive, develop better links with diverse communities and make their work more equitable. Consultation with members of the public from Black African-, Asian- and Caribbean-heritage communities were held and were essential in developing the Framework. Sixteen organisations who are involved in health and care research were recruited as pilot partners. They worked through the Framework and provided further feedback and input. The final product is a self-assessment tool which comprises of 50 questions across five domains. These domains are: 1) individual responsibility, 2) leadership, 3) public partnerships, 4) recruitment, and 5) systems and processes. The questions are designed to promote reflection and improve organisational good practice. This is the first tool of its kind, and we recommend its use for health and care research organisations that work closely and develop partnerships with members of the public. [ABSTRACT FROM AUTHOR]

Background: Advances in health equity rely on representation of diverse groups in population health research samples. Despite progress in the diversification of research samples, continued expansion to include systematically excluded groups is needed to address health inequities. One such group that is infrequently represented in population health research are adults with intellectual disability. Individuals with intellectual disability experience pervasive health disparities. Representation in population health research is crucial to determine the root causes of inequity, understand the health of diverse populations, and address health disparities. The purpose of this paper was to develop recommendations for researchers to increase the accessibility of university health research and to support the inclusion of adults with intellectual disability as participants in health research. Methods: A comprehensive literature review, consultation with the university ethics review board, and review of United States federal regulations was completed to identify barriers to research participation for individuals with intellectual disability. A collaborative stakeholder working group developed recommendations and products to increase the accessibility of university research for participants with intellectual disability. Results: Eleven key barriers to research participation were identified including gaps in researchers' knowledge, lack of trust, accessibility and communication challenges, and systematic exclusion among others. Together the stakeholder working group compiled seven general recommendations for university health researchers to guide inclusion efforts. Recommendations included: 1) address the knowledge gap, 2) build community partnerships, 3) use plain language, 4) simplify consent and assent processes, 5) establish research capacity to consent, 6) offer universal supports and accommodations, and 7) practice accessible dissemination. In addition, four products were created as part of the stakeholder working group to be shared with researchers to support the inclusion of participants with intellectual disability. 1) Supports I Need Checklist, 2) Plain language glossary of health and research terms, 3) Understanding Consent and Assent in Plain Language, 4) Easy-Read Paper Template. Conclusion: Community members and individuals with intellectual disability want to be included in research and are eager to engage as research participants. It is the responsibility of the researcher to open the door to university health research. The recommendations discussed in this paper could increase accessibility for a broader range of research participants and, in particular, promote the inclusion of individuals with intellectual disability to advance health equity in population health research. [ABSTRACT FROM AUTHOR]

Africa faces a significant burden of infectious diseases, including Malaria and HIV/AIDS, along with an increasing prevalence of non-infectious diseases such as diabetes and cancer. This dual health challenge is amplified by socioeconomic difficulties, restricted access to healthcare, and lifestyle changes, thus present unique scientific needs. Effectively addressing these issues requires a skilled scientific workforce adept in comprehensive healthcare strategies. This analysis explores the critical landscape of health research in Africa, emphasizing the unique opportunity presented by the continent's youthful population, projected to reach almost 1 billion by 2050. The youth's innovative potential and fresh perspectives offer a chance to overcome development barriers in health research. Nevertheless, challenges such as under-resourced education, limited research training, inadequate mentorship, and funding difficulties persist. This paper urgently calls upon African leaders, international partners, and stakeholders to prioritize health research, mobilize funding, forge strategic partnerships, and empower the youth as essential steps to capitalize on the continent's dynamic youth for breakthrough health outcomes. Such investments are vital not just for health but for the overall economic, social, and strategic growth of the continent. Through shared responsibility and a united effort, the potential of African youth can be harnessed, leading to transformative research, improved health outcomes, and a prosperous future. This perspective represents the collective voice of passionate young researchers and advocates across Africa, calling for a new era of health research on the continent. [ABSTRACT FROM AUTHOR]

Many research institutions and funders have recently stated their commitment to actively support and promote 'Equality, Diversity and Inclusion' (EDI) in various aspects of health research including Patient and Public Involvement (PPI). However, translating this commitment into specific research projects presents significant challenges that existing approaches, practical guidelines and initiatives have not adequately addressed. In this paper, we explore how the lack of clear justifications for the EDI commitment in existing guidelines inadvertently complicates the work of those involved with PPI and we stress the need for conceptual clarity for any EDI effort to yield meaningful results. Our focus centres on the first principle of the EDI discourse, 'equality', particularly in the form of 'equality of opportunity' as outlined in current guidance provided by the National Institute of Health Research in the United Kingdom. We examine challenges related to justifying and implementing a general, unspecified commitment to equality of opportunity and explain that this reflects a lack of consensus regarding the moral value of PPI in research – a profound problem that remains unaddressed. We then discuss how the presence of several opposing moral perspectives on PPI, makes determining the most appropriate way of addressing barriers to involvement complex and controversial, raising ethical implications for the work of health researchers, PPI specialists and coordinators. Finally we make suggestions on how future research can enrich the concept of 'equality of opportunity' in PPI and improve practice. While our primary focus is on the NIHR, a strong advocate of PPI in research, this analysis will point to normative and ethical considerations that may be relevant to other research institutions and funding organisations aiming to promote equality of opportunity in their public and patient involvement strategies. [ABSTRACT FROM AUTHOR]

Background: Partnerships between Higher Education Institutions (HEIs) in the global north and south have commonly been used as a vehicle to drive global health research and initiatives. Among these initiatives, include health system strengthening, research capacity building, and human resource training in developing countries. However, the partnership functioning of many global north-south partnerships still carry legacies of colonialism through unrecognized behavior patterns, attitudes, and belief systems in how they function. Even with research literature calling for a shift from equality to equity in the functioning of these partnerships, many still struggle with issues of complex and unspoken power dynamics. To understand the successes and challenges of north-south partnerships, this paper explored partnership development and functioning of a northern and multi-southern HEIs partnership focused on nutrition education and research. Methods: A qualitative research approach was used; data were collected through in-depth interviews (IDIs) with questions developed from the Bergen Model of Collective Functioning (BMCF). Thirteen IDIs were conducted with partners from all institutions including stakeholders. Findings: The partnership was built on the foundation of experiences and lessons of a previous partnership. Partners used these experiences and lessons to devise strategies to improve partnership inputs, communication, leadership, roles and structures, and maintenance and communication tasks. However, these strategies had an impact on partnership functioning giving rise to issues of inequitable power dynamics. The northern partner had two roles: one as an equal partner and another as distributor of project funds; this caused a conflict in roles for this partner. The partners distinguished themselves according to partner resources – two partners were named implementing partners and two named supportive partners. Roles and partner resources were the greatest contributors to power imbalances and caused delays in project activities. Conclusion: Using the BMCF to examine partnership dynamics illuminated that power imbalances caused a hierarchical stance in the partnership with northern partners having overall control and power of decision-making in the partnership. This could impact the effectiveness and sustainability of project in the southern institutions going forward. [ABSTRACT FROM AUTHOR]

Introduction: Ensuring adequate representation and the active, meaningful and visible involvement of groups likely to be most impacted by research findings and/or the lack of research inquiry are increasingly acknowledged. This is particularly relevant for Black racially minoritised groups who are less visible as research participants and in patient and public involvement and engagement (PPIE) roles. Our viewpoint article sought to discuss reflections and insights on their involvement experience, with particular attention to perceived barriers and enablers to PPIE involvement. Methods: Qualitative data were collected as part of facilitated group discussions from nine Black racially minoritised experts‐by‐experience involved in a PPIE advisory group. Data were subjected to thematic analysis to identify key themes. Results: Five main themes were identified that reflected factors linked to practicalities: role unfamiliarity, benefits for the larger community, acknowledgement of previous harm and mental health stigma. Conclusion: Given the existence and importance of the direct links between research and service and treatment innovations in health and social care, ensuring that those from underrepresented Black racial communities are meaningfully and equitably supported to have roles in advising and influencing research programmes should be prioritised and an ongoing consideration for different stakeholders, including research funders, researchers, healthcare providers and community leaders/representatives. Patient or Public Contribution: This viewpoint article is a collaboration between lived experience stakeholders and researchers, comprising conceiving the original idea for the paper, its conceptualisation and data generation and the coproduction including editing of the manuscript. [ABSTRACT FROM AUTHOR]

Background: In Australia, Aboriginal and Torres Strait Islander (Indigenous) families have strong, cohesive, and nurturing cultural practices that contribute to effective family functioning and child rearing. These practices can lead to positive effects on children and communities, and include kinship relations, traditional knowledge systems, collective community focus, respect for Elders contributions, and spirituality. However, poor health and wellbeing outcomes exist across the lifespan for Indigenous Australians. Health programs, services and research that support Indigenous women, babies and their families are a critical investment to improve birthing and health outcomes and impact the life trajectories of Indigenous Australians. Aim: The Indigenous Health Research Priorities study aims to identify the research priorities for families during the perinatal and early childhood period through a co-designed and collaborative process. This has been led by communities to determine the priorities identified with and for local Indigenous families in Queensland. This paper aims to report on engagement and involvement with Indigenous communities to identity health research priorities for families and presents preliminary findings of the research process including participants' demographic information and feedback on the yarning sessions, as part of the study protocol. Methods: The study protocol showcases the Participatory Action Research approach, yarning sessions with clients and staff of three community-controlled health services to date, and Delphi workshop methods to prioritise the health issues identified during the yarns with corresponding communities. The study will undertake qualitative data collection and analysis to identify and report on community and health service research priorities for Indigenous families in Queensland. A short survey was conducted to collect participants' demographic information. A feedback form with five open-ended questions was also administered to collect data on participants' views and satisfaction with the research process. Preliminary results: This protocol paper reports on the participant demographic information and feedback on the research process and reactions to participating in the yarning sessions. There have been 12 yarning sessions in Far North Queensland to date. The qualitative analysis of these will be reported on in future, with South East Queensland and further sites to follow. Feedback from 61 community members and health professionals has highlighted they valued sharing stories, being heard, and feeling hopeful. Preliminary findings will be reported. Discussion: Identification of health research priorities will allow each organisation and region of Queensland to develop research initiatives and the translational outcomes that are a focus for their community members. Plain English summary: Health programs and services designed to support Aboriginal and Torres Strait Islander (herein Indigenous) women, babies and their families are a critical investment to improve birthing and health outcomes, and potentially impact the life course of Indigenous Australians. The Indigenous Health Research Priorities study aims to identify research priorities for families during pregnancy, birthing, and early childhood through a collaborative consultation process. We engaged with community members, both clients and health care staff of three community-controlled health services in Far North Queensland. Yarning sessions were held to identify health research priorities with and for local Indigenous families. Feedback forms were collected to gauge engagement and satisfaction with the research process. Twelve yarning sessions with 61 participants highlighted they valued sharing stories, being heard, having a voice, and feeling hopeful. Identifying health research priorities will allow each organisation and region of Queensland to develop health programs and services and research initiatives that are important for their community members. Once the yarning group data is analysed, we will return to discuss, prioritise, and reach consensus on those health issues identified during the yarns with communities, using a Delphi study. The Delphi will run as an interactive workshop using playing cards and group discussions, where participants will rank the importance of the health issues for their community. Prioritising the top 10 health issues will help to ensure research is designed better for and with communities, so that future research directions meet the needs identified and self-determined by Indigenous communities. [ABSTRACT FROM AUTHOR]

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Background: Health research is typically disseminated through peer-reviewed journals and academic forums. However, evidence suggests limited exploration of alternative communication methods for effective knowledge dissemination. Objectives: This study aimed to determine the extent to which policymakers in Malawi consult health researchers while translating their knowledge. This study aimed to determine the postresearch endeavours of Malawian health researchers to incorporate research findings into policy and decision making. Method: Conducted at Kamuzu University of Health Sciences (KUHeS), this cross-sectional study employed a 5-point Likert scale survey to collect data from researchers, offering a snapshot view without indicating temporal changes or causality. Results: Researchers rarely created suggestions, take-home messages, or actionable instructions for use by health officials. They seldom give users access to a searchable database of papers, studies, and syntheses that summarise recommendations for policymakers in the field of health. They seldom send reprints of papers from scientific publications to decisionmakers. Few researchers have created summaries of articles or systematic reviews for health officials’ use. Conclusion: Traditional channels, such as journals and conferences, dominate the dissemination of health research. However, limited evidence suggests the need for broader communication strategies. The current landscape lacks effective products and methods, urging researchers to produce accessible formats with clear, key messages to address policy questions. Contribution: Researchers should develop research products in compelling formats by using clear key messages. The summarised evidence should answer important policy questions. Researchers should involve the media to communicate their research outputs. [ABSTRACT FROM AUTHOR]

Copyright of Tapuya: Latin American Science, Technology & Society is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Community engagement is gaining prominence in health research. But communities rarely have a say in the agendas or conduct of the very health research projects that aim to help them. One way thought to achieve greater inclusion for communities throughout health research projects, including during priority-setting, is for researchers to partner with community organizations (COs). This paper provides initial empirical evidence as to the complexities such partnerships bring to priority-setting practice. Case study research was undertaken on a three-stage CO-led priority-setting process for health systems research. The CO was the Zilla Budakattu Girijana Abhivrudhhi Sangha, a district-level community development organization representing the Soliga people in Karnataka, India. Data on the priority-setting process were collected in 2018 and 2019 through in-depth interviews with researchers, Sangha leaders and field investigators from the Soliga community who collected data as part of the priority-setting process. Direct observation and document collection were also performed, and data from all three sources were thematically analysed. The case study demonstrates that, when COs lead health research priority-setting, their strengths and weaknesses in terms of representation and voice will affect inclusion at each stage of the priority-setting process. CO strengths can deepen inclusion by the CO and its wider community. CO weaknesses can create limitations for inclusion if not mitigated, exacerbating or reinforcing the very hierarchies that impede the achievement of improved health outcomes, e.g. exclusion of women in decision-making processes related to their health. Based on these findings, recommendations are made to support the achievement of inclusive CO-led health research priority-setting processes. [ABSTRACT FROM AUTHOR]

Background: The objective of this paper is to describe the activities, challenges and mitigation strategies, lessons learned and reflections on the importance of engagement from the first year of the Canadian Consortium on Neurodegeneration in Aging (CCNA) Engagement of People with Lived Experience of Dementia (EPLED) Advisory Group and cross-cutting program. EPLED was created to support persons with dementia and care partners to be actively involved in the CCNA research process. Main body: The Advisory Group was formed to work with CCNA researchers and programs to develop new ways to further collaborate and advance the methods of patient engagement in research on dementia. A role profile and recruitment poster were developed and, after interviews, 17 people were invited to join the Advisory Group. We planned three online EPLED meetings to take place between July–August of 2020, with one in-person meeting to be held in Canada. Due to COVID-19, we moved all of these meetings online. In the first year, EPLED and the Advisory Group met seven times formally, four times informally, developed a website, engaged with CCNA research projects, participated in CCNA "Central" activities and formulated an evaluation plan. For researchers and people with lived experience of dementia, motivations for patient engagement included challenging stigma, making meaning from their experience (such as building relationships and having their voices heard) and contributing to research. Common challenges to engagement were related to navigating the impact of COVID-19, such as difficulty in getting to know each other and technical issues with video-conference software. We learned that developing trusting relationships, providing education, offering support, being flexible and acknowledging tensions between research, practice and lived experience, were vital to the success of the Advisory Group. Conclusion: The first year of the EPLED Advisory Group demonstrated the potential contributions of people with lived experience of dementia as partners in research. Building these collaborations with individuals and communities—people living with dementia, care partners, researchers and research institutions—has the potential for positive impact across these groups and, ultimately, improve the lives of people living with dementia and their care partners. Plain English summary: In this paper, we describe the development of the Canadian Consortium of Neurodegeneration in Aging (CCNA) Engagement of People with Lived Experience of Dementia (EPLED) cross-cutting program and the first year of the EPLED Advisory Group. EPLED was created to build opportunities for patient engagement in the CCNA's research on dementia. People living with dementia and current/former friends, family and care partners were recruited from across Canada to join the Advisory Group. In the first year, the Advisory Group met seven times formally, four times informally, developed a website, engaged with CCNA research projects, participated in CCNA "Central" activities and formulated an evaluation plan. Challenges included the impacts of the COVID-19 pandemic, online meetings, and differing expectations and priorities. Lessons learned and reflections on the importance of engagement are discussed in the context of research on dementia and from the perspectives of researchers and Advisory Group members. [ABSTRACT FROM AUTHOR]

Storytelling is a powerful means to evoke empathy and understanding among people. When patient partners, which include patients, family members, caregivers and organ donors, share their stories with health professionals, this can prompt listeners to reflect on their practice and consider new ways of driving change in the healthcare system. However, a growing number of patient partners are asked to 'share their story' within health care and research settings without adequate support to do so. This may ultimately widen, rather than close, the gap between healthcare practitioners and people affected by chronic disease in this new era of patient and public involvement in research. To better support patient partners with storytelling in the context of a patient-oriented research network, Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) Network adapted an existing in-person storytelling workshop for patient educators within a hospital setting. The result is a 6-week virtual program called Storytelling for Impact, which guides patients, family members, caregivers and organ donors in developing impactful stories and sharing them at health care and research events, e.g., conferences. The online series of synchronous workshops is co-facilitated by story coaches, who are program alumni and Can-SOLVE CKD staff with trained storytelling experience. Each story follows a structure that includes a call to action, which aims to positively impact the priority-setting and delivery of care and research in Canada. The program has been a transformational process for many who have completed it, and numerous other health organizations have expressed interest in sharing this tool with their own patient partners. As result, we have also created an asynchronous online program that can be used by other interested parties outside our network. Patient partners who share their stories can be powerful mediators for inspiring changes in the health care and research landscape, with adequate structured support. We describe two novel programs to support patient partners in impactful storytelling, which are applicable across all health research disciplines. Additional resources are required for sustainability and scale up of training, by having alumni train future storytellers. Plain English summary: Storytelling is a powerful means to evoke empathy and understanding among people. When patient partners share their stories with health professionals, this can prompt listeners to reflect on their practice and consider new ways of improving the healthcare system. However, as a growing number of patient partners are asked to 'share their story' within health care and research settings, there is often not enough tools and resources to support them in preparing their stories in a way that will be impactful for the audience members. Our kidney research network sought to create a novel in-person storytelling program to address this gap within our health research context. The result is a 6-week program called Storytelling for Impact, which guides patient partners—which includes patients, family members, caregivers and organ donors—in developing impactful stories and sharing them in a formal setting. The program is led by story coaches, who are patient partners and staff with trained storytelling experience. Participants are encouraged to include a call to action in their story, which aims to outline clear ways in which health professionals can facilitate positive change in health research or care. Many participants have described the program as transformational, and numerous other health organizations have expressed interest in sharing this tool with their own patient partners. As a result, we have also created a second online program that can be used by other interested parties outside our network. This paper highlights the adaptation process, content, participant feedback and next steps for the program. [ABSTRACT FROM AUTHOR]

Recent decades have seen considerable increases in funding and support for community-engaged research (CER) in the health sciences, including the introduction of community engagement requirements into federally funded research infrastructure programs. This paper asks why, despite these supports and incentives, even the best-intentioned researchers and research organizations may struggle to design, implement, and sustain successful community engagement strategies. This question is examined using an exploratory case study of an environmental health sciences research center whose strategies were influenced in part by a requirement by the funder to incorporate community engagement into its research activities. This study utilizes multiple sources of qualitative data collected between the research center's second and fifth years of operation, including participant observation, interviews, and focus groups. The analysis employs an organizational perspective, yielding insights into the factors hindering and facilitating the development of practices that integrate community perspectives and control into academic structures. The findings point to an ongoing dialectic between support for innovative community engagement practices and persistence of conventional academic structures. We highlight the interconnected effects of environmental influences, organizational structures, and individual agency on the development of innovative community engagement practices. The implications for future research and practice are discussed. [ABSTRACT FROM AUTHOR]

Recent data protection regulatory frameworks, such as the Protection of Personal Information Act (POPI Act) in South Africa and the General Data Protection Regulation (GDPR) in the European Union, impose governance requirements for research involving high-risk and vulnerable groups such as children and adolescents. Our paper's objective is to unpack what constitutes adequate safeguards to protect the personal information of vulnerable populations such as children and adolescents. We suggest strategies to adhere meaningfully to the principal aims of data protection regulations. Navigating this within established research projects raises questions about how to interpret regulatory frameworks to build on existing mechanisms already used by researchers. Therefore, we will explore a series of best practices in safeguarding the personal information of children, adolescents, and young people (0-24 years old), who represent more than half of sub-Saharan Africa's population. We discuss the actions the research group took to ensure regulations such as GDPR and POPIA effectively build on existing data protection mechanisms for research projects at all stages, focusing on promoting regulatory alignment throughout the data lifecycle. Our goal is to stimulate a broader conversation on improving the protection of sensitive personal information of children, adolescents, and young people in sub-Saharan Africa. We join this discussion as a research group generating evidence influencing social and health policy and programming for young people in sub-Saharan Africa. Our contribution draws on our work adhering to multiple transnational governance frameworks imposed by national legislation, such as data protection regulations, funders, and academic institutions. [ABSTRACT FROM AUTHOR]

The recently released draft South African Ethics in Health Research Guidelines: Principles, Processes and Structures (Draft Guidelines) by the National Health Research Ethics Council recognize open data and provide guiding principles for this in the context of health research in South Africa. While its inclusion is a positive development, there is room for improvement. Although the Draft Guidelines leverage the Draft National Policy on Data and Cloud, it lacks incorporation of other relevant government policies, notably the Draft National Open Science Policy, and fails to sufficiently detail the principles of open science and open access. This limited scope and lack of comprehensive definition and detailed guidance present challenges for researchers in conducting ethical and responsible health research in South Africa. It constrains the Draft Guidelines from fully aligning with national imperatives and from fostering African-centric approaches. To address these issues, it is recommended that the Draft Guidelines integrate broader policies and principles, enhance clarity through comprehensive definitions, provide detailed guidance on open access, and promote African-centric approaches. Implementing these solutions will strengthen the Draft Guidelines, aligning them with national visions of open science, and thereby harnessing the full potential of South Africa's diverse scientific community in advancing health research. [ABSTRACT FROM AUTHOR]

Background: Artificial intelligence (AI) is giving rise to a revolution in medicine and health care. Mental health conditions are highly prevalent in many countries, and the COVID-19 pandemic has increased the risk of further erosion of the mental well-being in the population. Therefore, it is relevant to assess the current status of the application of AI toward mental health research to inform about trends, gaps, opportunities, and challenges. Objective: This study aims to perform a systematic overview of AI applications in mental health in terms of methodologies, data, outcomes, performance, and quality. Methods: A systematic search in PubMed, Scopus, IEEE Xplore, and Cochrane databases was conducted to collect records of use cases of AI for mental health disorder studies from January 2016 to November 2021. Records were screened for eligibility if they were a practical implementation of AI in clinical trials involving mental health conditions. Records of AI study cases were evaluated and categorized by the International Classification of Diseases 11th Revision (ICD-11). Data related to trial settings, collection methodology, features, outcomes, and model development and evaluation were extracted following the CHARMS (Critical Appraisal and Data Extraction for Systematic Reviews of Prediction Modelling Studies) guideline. Further, evaluation of risk of bias is provided. Results: A total of 429 nonduplicated records were retrieved from the databases and 129 were included for a full assessment--18 of which were manually added. The distribution of AI applications in mental health was found unbalanced between ICD-11 mental health categories. Predominant categories were Depressive disorders (n=70) and Schizophrenia or other primary psychotic disorders (n=26). Most interventions were based on randomized controlled trials (n=62), followed by prospective cohorts (n=24) among observational studies. AI was typically applied to evaluate quality of treatments (n=44) or stratify patients into subgroups and clusters (n=31). Models usually applied a combination of questionnaires and scales to assess symptom severity using electronic health records (n=49) as well as medical images (n=33). Quality assessment revealed important flaws in the process of AI application and data preprocessing pipelines. One-third of the studies (n=56) did not report any preprocessing or data preparation. One-fifth of the models were developed by comparing several methods (n=35) without assessing their suitability in advance and a small proportion reported external validation (n=21). Only 1 paper reported a second assessment of a previous AI model. Risk of bias and transparent reporting yielded low scores due to a poor reporting of the strategy for adjusting hyperparameters, coefficients, and the explainability of the models. International collaboration was anecdotal (n=17) and data and developed models mostly remained private (n=126). Conclusions: These significant shortcomings, alongside the lack of information to ensure reproducibility and transparency, are indicative of the challenges that AI in mental health needs to face before contributing to a solid base for knowledge generation and for being a support tool in mental health management. [ABSTRACT FROM AUTHOR]

The practice of medical decision making is changing rapidly with the development of innovative computing technologies. The growing interest of data analysis with improvements in big data computer processing methods raises the question of whether machine learning can be integrated with conventional statistics in health research. To help address this knowledge gap, this paper presents a review on the conceptual integration between conventional statistics and machine learning, focusing on the health research. The similarities and differences between the two are compared using mathematical concepts and algorithms. The comparison between conventional statistics and machine learning methods indicates that conventional statistics are the fundamental basis of machine learning, where the black box algorithms are derived from basic mathematics, but are advanced in terms of automated analysis, handling big data and providing interactive visualizations. While the nature of both these methods are different, they are conceptually similar. Based on our review, we conclude that conventional statistics and machine learning are best to be integrated to develop automated data analysis tools. We also strongly believe that machine learning could be explored by health researchers to enhance conventional statistics in decision making for added reliable validation measures. [ABSTRACT FROM AUTHOR]

Tribes are the most vulnerable, particularly in healthcare. Health research in a population helps to understand the trends of various diseases and other social determinants causing them. Our study aims to perform a bibliometric analysis of Tribal research in India from its status quo. Materials and Methods: Research articles on tribal health were retrieved from Scopus and analyzed using MS Office, VOS viewer, and Word Cloud generator from January 2000 to December 2020. The number of research publications published each year, the clustering pattern of contributing authors, the most popular journals, the leading publication, document type, domain research areas, and commonly used keywords were all considered in the study. Results: As a result of the search, 1249 research publications were found. According to our selection criteria, only 395 research papers were included in the analysis. Approximately 43 research publications were published in 2020, but only three articles were published in 2000. Almost 35.7% of articles were published in traditional medicine, and 15.7% and 14.7% of articles were published in nutrition and infectious diseases. Less than 1% of articles were published in Health Policy, and 1.5% were published in Health Systems. Conclusions: The study results showed that the research on tribes has now been improving in the following years. Research into tribal mental health and health care systems should be encouraged. Collaboration and funding may assist academic institutions in raising awareness of health issues in these populations. [ABSTRACT FROM AUTHOR]

Biosignals represent a first-line source of information to understand the behavior and state of human biological systems, often used in machine learning problems. However, the development of healthcare-related algorithms that are both personalized and robust requires the collection of large volumes of data to capture representative instances of all possible states. While the rise of flexible biosignal acquisition solutions has enabled the expedition of data collection, they often require complicated frameworks or do not provide the customization required in some research contexts. As such, EpiBOX was developed as an open-source, standalone, and automated platform that enables the long-term acquisition of biosignals, passable to be operated by individuals with low technological proficiency. In particular, in this paper, we present an in-depth explanation of the framework, methods for the evaluation of its performance, and the corresponding findings regarding the perspective of the end-user. The impact of the network connection on data transfer latency was studied, demonstrating innocuous latency values for reasonable signal strengths and manageable latency values even when the connection was unstable. Moreover, performance profiling of the EpiBOX user interface (mobile application) indicates a suitable performance in all aspects, providing an encouraging outlook on adherence to the system. Finally, the experience of our research group is described as a use case, indicating a promising outlook regarding the use of the EpiBOX framework within similar contexts. As a byproduct of these features, our hope is that by empowering physicians, technicians, and monitored subjects to supervise the biosignal collection process, we enable researchers to scale biosignal collection. [ABSTRACT FROM AUTHOR]

Background: Health research is typically disseminated through peer-reviewed journals and academic forums. However, evidence suggests limited exploration of alternative communication methods for effective knowledge dissemination. Objectives: This study aimed to determine the extent to which policymakers in Malawi consult health researchers while translating their knowledge. This study aimed to determine the post-research endeavours of Malawian health researchers to incorporate research findings into policy and decision making. Method: Conducted at Kamuzu University of Health Sciences (KUHeS), this cross-sectional study employed a 5-point Likert scale survey to collect data from researchers, offering a snapshot view without indicating temporal changes or causality. Results: Researchers rarely created suggestions, take-home messages, or actionable instructions for use by health officials. They seldom give users access to a searchable database of papers, studies, and syntheses that summarise recommendations for policymakers in the field of health. They seldom send reprints of papers from scientific publications to decision-makers. Few researchers have created summaries of articles or systematic reviews for health officials’ use. Conclusion: Traditional channels, such as journals and conferences, dominate the dissemination of health research. However, limited evidence suggests the need for broader communication strategies. The current landscape lacks effective products and methods, urging researchers to produce accessible formats with clear, key messages to address policy questions. Contribution: Researchers should develop research products in compelling formats by using clear key messages. The summarised evidence should answer important policy questions. Researchers should involve the media to communicate their research outputs.

African development is defined by a number of meta-trends, including climate disruption, digitalisation, informalisation, regionalisation and most recently the impacts of the coronavirus disease 2019 (COVID-19) pandemic. The paper under consideration here is informed primarily by two of these: regionalism and the COVID-19 pandemic. Africa, or at least parts of it, have been severely affected by pandemics in recent decades. At the same time deepening regionalisation allows for more coordinated and effective actions to mitigate their worst effects. However, to date, regional integration efforts have not generally delivered desired results, and in the area of Health Science Research (HSciR) specifically, which is the area of focus for this paper. This important paper considers the nature of current activities in relation to health research by regional organizations on the continent. It provides a baseline study and incipient manifesto for increased effectiveness and greater contribution in the area of HSciR on the continent.

Background: Recruitment of diverse populations for health research studies remains a challenge. The COVID-19 pandemic has exacerbated these challenges by limiting in-person recruitment efforts and placing additional demands on potential participants. Social media, through the use of Facebook advertisements, has the potential to address recruitment challenges. However, existing reports are inconsistent with regard to the success of this strategy. Additionally, limited information is available about processes that can be used to increase the diversity of study participants. Objective: A Qualtrics survey was fielded to ascertain women's knowledge of and health care experiences related to breast density. This paper describes the process of using Facebook advertisements for recruitment and the effectiveness of various advertisement strategies. Methods: Facebook advertisements were placed in 2 rounds between June and July 2020. During round 1, multiple combinations of headlines and interest terms were tested to determine the most cost-effective advertisement. The best performing advertisement was used in round 2 in combination with various strategies to enhance the diversity of the survey sample. Advertisement performance, cost, and survey respondent data were collected and examined. Results: In round 1, a total of 45 advertisements with 5 different headlines were placed, and the average cost per link click for each headline ranged from US $0.12 to US $0.79. Of the 164 women recruited in round 1, in total 91.62% were eligible to complete the survey. Advertisements used during recruitment in round 2 resulted in an average cost per link click of US $0.11. During the second round, 478 women attempted the survey, and 87.44% were eligible to participate. The majority of survey respondents were White (80.41%), over the age of 55 years (63.94%), and highly educated (63.71%). Conclusions: Facebook advertisements can be used to recruit respondents for health research quickly, but this strategy may yield participants who are less racially diverse, more educated, and older than the general population. Researchers should consider recruiting participants through other methods in addition to creating Facebook advertisements targeting underrepresented populations. [ABSTRACT FROM AUTHOR]

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Etuaptmumk or Two-Eyed Seeing (E/TES) is foundational in ensuring that Indigenous ways of knowing are respected, honoured, and acknowledged in health research practices with Indigenous Peoples of Canada. This paper will outline new knowledge gleaned from the Canadian Institute of Health Research and Chronic Pain Network funded Aboriginal Children's Hurt & Healing (ACHH) Initiative that embraces E/TES for respectful research. We share the ACHH exemplar to show how Indigenous community partners take the lead to address their health priorities by integrating cultural values of kinship and interconnectedness as essential components to enhance the process of community-led research. E/TES is conceptualised into eight essential considerations to know in conducting Indigenous health research shared from a L'nuwey (Mi'kmaw) perspective. L'nu knowledge underscores the importance of working from an Indigenous perspective or specifically from a L'nuwey perspective. L'nuwey perspectives are a strength of E/TES. The ACHH Initiative grew from one community and evolved into collective community knowledge about pain perspectives and the process of understanding community-led practices, health perspectives, and research protocols that can only be understood through the Two-Eyed Seeing approach. [ABSTRACT FROM AUTHOR]

Abstract Background In Australia, Aboriginal and Torres Strait Islander (Indigenous) families have strong, cohesive, and nurturing cultural practices that contribute to effective family functioning and child rearing. These practices can lead to positive effects on children and communities, and include kinship relations, traditional knowledge systems, collective community focus, respect for Elders contributions, and spirituality. However, poor health and wellbeing outcomes exist across the lifespan for Indigenous Australians. Health programs, services and research that support Indigenous women, babies and their families are a critical investment to improve birthing and health outcomes and impact the life trajectories of Indigenous Australians. Aim The Indigenous Health Research Priorities study aims to identify the research priorities for families during the perinatal and early childhood period through a co-designed and collaborative process. This has been led by communities to determine the priorities identified with and for local Indigenous families in Queensland. This paper aims to report on engagement and involvement with Indigenous communities to identity health research priorities for families and presents preliminary findings of the research process including participants’ demographic information and feedback on the yarning sessions, as part of the study protocol. Methods The study protocol showcases the Participatory Action Research approach, yarning sessions with clients and staff of three community-controlled health services to date, and Delphi workshop methods to prioritise the health issues identified during the yarns with corresponding communities. The study will undertake qualitative data collection and analysis to identify and report on community and health service research priorities for Indigenous families in Queensland. A short survey was conducted to collect participants’ demographic information. A feedback form with five open-ended questions was also administered to collect data on participants’ views and satisfaction with the research process. Preliminary results This protocol paper reports on the participant demographic information and feedback on the research process and reactions to participating in the yarning sessions. There have been 12 yarning sessions in Far North Queensland to date. The qualitative analysis of these will be reported on in future, with South East Queensland and further sites to follow. Feedback from 61 community members and health professionals has highlighted they valued sharing stories, being heard, and feeling hopeful. Preliminary findings will be reported. Discussion Identification of health research priorities will allow each organisation and region of Queensland to develop research initiatives and the translational outcomes that are a focus for their community members.

Abstract Background The translation of research into healthcare practice relies on effective communication between disciplines, however strategies to address the gap between information sharing and knowledge transfer are still under exploration. Communities of Practice (CoP) are informal networks of stakeholders with shared knowledge or endeavour and present an opportunity to address this gap beyond disciplinary boundaries. However, the evidence-base supporting their development, implementation and efficacy in health is not well described. This review explores the evidence underpinning the use of CoP in health research and translation. Methods A scoping review was undertaken using Arksey and O'Malley's methodological framework. A comprehensive search of health databases and grey literature was performed using keywords and controlled vocabulary. Studies were not restricted by date or research method. Results A total of 1355 potentially relevant articles were identified through the global search strategy. Following screening, six articles were retained for analysis. Included studies were published between 2002 and 2013 in the United Kingdom (n = 3), Canada (n = 2) and Italy (n = 1). Three papers reported primary research; one used a quantitative methodology, one a qualitative, and one a descriptive evaluation approach. The three remaining papers explored seminal and evolving theories of CoP in the context of knowledge transfer and translation to the health sector. Conclusions A paucity of evidence exists regarding the development and efficacy of CoP in health research and translation. Further empirical research is required to determine if communities of practice can enhance the translation of research into clinical practice.

Background Despite insistent calls for more and better evidence to inform action to reduce health inequities, applied health research sensitive to these inequalities is rare. Recognising this problem, the Collaboration for Leadership in Applied Research and Care in the North West Coast (England) developed the Health Inequalities Assessment Toolkit (HIAT) to support those involved in health research to integrate equity into their work. Objective This paper reports on an evaluation of the extent to which HIAT enhances the equity focus of the work of users. Methods The evaluation used semi-structured interviews, focus groups and workshops (n  = 131 respondents including Public Advisers, university, NHS and local government partners). Routine data included HIAT feedback forms. Findings HIAT can help to strengthen the equity focus of applied health research by: increasing understanding of how socioeconomic inequities impact on health; building capacity for integrating equity into all aspects of research, implementation and capacity building; stimulating thinking on action to address local structural drivers of health inequalities; and increasing understanding of the positive contribution public involvement can make to research. Conclusion If we are to advance health equity goals delivering research and training needs to be combined with political commitment to create more equal societies. [ABSTRACT FROM AUTHOR]

To adequately address health disparities, underserved populations must be recruited for biomedical research. Particularly, Black women have been insufficiently included in biomedical research for reasons beyond those of participant preference. Researchers can and should be taking responsibility to ensure rigorous methods are employed to appropriately recruit Black women and enable meaningful implications of their results. The objective of this paper is to identify and describe innovative community-based strategies for successful recruitment of Black women in research. Three studies are referenced to exemplify recruitment methods and demonstrate promising recruitment results in sample size and screening-to-enrollment ratio. [ABSTRACT FROM AUTHOR]

Abstract Background Advances in health equity rely on representation of diverse groups in population health research samples. Despite progress in the diversification of research samples, continued expansion to include systematically excluded groups is needed to address health inequities. One such group that is infrequently represented in population health research are adults with intellectual disability. Individuals with intellectual disability experience pervasive health disparities. Representation in population health research is crucial to determine the root causes of inequity, understand the health of diverse populations, and address health disparities. The purpose of this paper was to develop recommendations for researchers to increase the accessibility of university health research and to support the inclusion of adults with intellectual disability as participants in health research. Methods A comprehensive literature review, consultation with the university ethics review board, and review of United States federal regulations was completed to identify barriers to research participation for individuals with intellectual disability. A collaborative stakeholder working group developed recommendations and products to increase the accessibility of university research for participants with intellectual disability. Results Eleven key barriers to research participation were identified including gaps in researchers’ knowledge, lack of trust, accessibility and communication challenges, and systematic exclusion among others. Together the stakeholder working group compiled seven general recommendations for university health researchers to guide inclusion efforts. Recommendations included: 1) address the knowledge gap, 2) build community partnerships, 3) use plain language, 4) simplify consent and assent processes, 5) establish research capacity to consent, 6) offer universal supports and accommodations, and 7) practice accessible dissemination. In addition, four products were created as part of the stakeholder working group to be shared with researchers to support the inclusion of participants with intellectual disability. 1) Supports I Need Checklist, 2) Plain language glossary of health and research terms, 3) Understanding Consent and Assent in Plain Language, 4) Easy-Read Paper Template. Conclusion Community members and individuals with intellectual disability want to be included in research and are eager to engage as research participants. It is the responsibility of the researcher to open the door to university health research. The recommendations discussed in this paper could increase accessibility for a broader range of research participants and, in particular, promote the inclusion of individuals with intellectual disability to advance health equity in population health research.

Abstract Purpose Social media has led to fundamental changes in the way that people look for and share health related information. There is increasing interest in using this spontaneously generated patient experience data as a data source for health research. The aim was to summarise the state of the art regarding how and why SGOPE data has been used in health research. We determined the sites and platforms used as data sources, the purposes of the studies, the tools and methods being used, and any identified research gaps. Methods A scoping umbrella review was conducted looking at review papers from 2015 to Jan 2021 that studied the use of SGOPE data for health research. Using keyword searches we identified 1759 papers from which we included 58 relevant studies in our review. Results Data was used from many individual general or health specific platforms, although Twitter was the most widely used data source. The most frequent purposes were surveillance based, tracking infectious disease, adverse event identification and mental health triaging. Despite the developments in machine learning the reviews included lots of small qualitative studies. Most NLP used supervised methods for sentiment analysis and classification. Very early days, methods need development. Methods not being explained. Disciplinary differences - accuracy tweaks vs application. There is little evidence of any work that either compares the results in both methods on the same data set or brings the ideas together. Conclusion Tools, methods, and techniques are still at an early stage of development, but strong consensus exists that this data source will become very important to patient centred health research.

Qualitative Longitudinal Research (QLR) is a dynamic and evolving methodology using time as a lens to inform study design, data collection and analysis. A key feature of QLR is the collection of data on more than one occasion, often described as waves or time points. Thus, researchers embarking on designing a new study need to consider several key features including the study duration (timeframe) and the frequency and intensity of data collection (tempo). Yet, how to embed these features in practice is not well described. Leveraging the intensive-extensive temporal plane of time, we explore research approaches employing both shorter and longer timeframes, as well as intensive and extensive tempos. Drawing on six studies that we have conducted, we discuss four pivotal aspects including: (i) crafting intensive-extensive tempo and timeframes; (ii) defining baseline and closure points; (iii) planning for flexibility; and (iv) working ethically within a temporal lens. By examining and critically analysing these case studies through the lens of the intensive-extensive plane of time, this article aspires to offer insights for researchers interested in using the QLR design in healthcare. We thus aim to prepare researchers for embedding these features during the research process. [ABSTRACT FROM AUTHOR]

This is the introductory paper in a collection of four papers on the Strategy for Patient-Oriented Research (SPOR) Evidence Alliance, a pan-Canadian research initiative that was funded by the Canadian Institutes of Health Research in September of 2017. Here, we introduce the SPOR enterprise in Canada, provide a rationale for the creation of the SPOR Evidence Alliance, provide information on the mandate and approach, and describe how the SPOR Evidence Alliance adds to the health research ecosystem in Canada and beyond.

Background: Consumer involvement in health research is when patients, their families and caregivers work with researchers on research projects. Despite the growing expectation for health services to facilitate the involvement of consumers in research, the practical integration of this approach is an ongoing process, with limited research conducted into how Australian health services can support this practice. This study explored consumer perspectives on the barriers and solutions to enabling consumer involvement in research within an Australian tertiary hospital and health service, and staff perspectives on the solutions to facilitating consumer involvement. A prior survey had identified barriers to consumer involvement from the staff perspective. The broad aim was to inform the development of a framework to help promote consumer involvement in research within the health service. Methods: A Nominal Group Technique (NGT) was utilised with groups comprised of health service consumers and staff. Three health consumers were co-researchers in the full life-cycle of this study and are included as authors. Results: Ten consumers and 14 staff participated across three sessions ranging from one to three hours. For consumers, barriers to their involvement were grouped into seven domains: (1) lack of connection with researchers/research projects, (2) low research literacy, (3) structural barriers, (4) lack of acknowledgement, (5) implementation challenges, (6) inadequate information provision, and (7) representation concerns. Solutions to enabling involvement were grouped into five domains: (1) support to connect with researchers/research projects, (2) adequate information provision, (3) incentive for involvement, (4) acknowledgement, and (5) balanced representation. Staff ideas for solutions were grouped into five domains: (1) support to connect with consumers, (2) support to involve consumers, (3) access to funds to remunerate consumers, (4) more time to involve consumers, and (5) staff training. Conclusion: Through an NGT methodology, this study delivered a nuanced comprehension of perspectives on involving consumers in research from both health service consumers and staff. These findings serve as a foundation for identifying strategies that foster enhanced and refined relationships between consumers and researchers, advancing the collaborative landscape in health research. The findings from this project offer valuable strategies for researchers to better engage consumers in research and for consumer groups to enhance their involvement. Additionally, these insights could be used by other health services to advocate for essential resources. Plain English Summary: Consumer involvement in health research is when patients, their families, and caregivers work with researchers on research projects. While there is a growing expectation for health services to promote the involvement of consumers in health service research, it is still a work in progress, especially in Australia, where there hasn't been much research done on this topic. This study looked at what consumers and staff at an Australian hospital thought would hinder or help consumers to become involved in health research. The study used a method called the Nominal Group Technique (NGT), where groups of staff and consumers met for sessions ranging from one to three hours to share and prioritise their ideas. Consumers thought that barriers to their involvement included difficulty connecting with researchers or projects, not knowing much about research, and personal barriers to involvement (such as lack of childcare). They believed that better connection with researchers, information, incentives for involvement, and ensuring everyone's voices are heard were possible solutions. Staff also had ideas for solutions, like providing support to connect with consumers and more time for research activities. Overall, this study describes what consumers and staff think about working together on research. These findings can help develop strategies for building relationships between consumers and researchers, advancing collaborative efforts in health research. [ABSTRACT FROM AUTHOR]

Healthcare professionals have first-hand experience with patients in clinical practice and the dynamics in the healthcare system, which can be of great value in the design, implementation, data analysis and dissemination of research study results. Primary care professionals are particularly important as they provide first contact, accessible, coordinated, comprehensive and continuous people-focused care. However, in-depth examination of the engagement of health professionals in health system research and planning activities—how professionals are engaged and how this varies across national contexts- is limited, particularly in international initiatives. There is a need to identify gaps in the planning of engagement activities to inform the design and successful implementation of future international efforts to improve the responsiveness of health systems to the changing needs of patients and professionals. The aim of this study was to explore how primary care professionals were engaged in the design and implementation plans of an international health policy study led by the Organisation for Economic Co-operation and Development (OECD). The OECD's international PaRIS survey measures and disseminates information on patient-reported outcome and experience measures (PROMs and PREMs) of people living with chronic conditions who are managed in primary care. A documentary analysis of 17 written national implementation plans (country roadmaps) was conducted between January and June 2023. Two reviewers independently performed the screening and data abstraction and resolved disagreements by discussion. We reported the intended target primary care professionals, phase of the study, channel of engagement, level of engagement, and purpose of engagement. All 17 countries aimed to engage primary care professionals in the execution plans for the international PaRIS survey. While organisations of primary care professionals, particularly of family doctors, were the most commonly targeted group, variation was found in the timing of engagement activities during the different phases of the study and in the level of engagement, ranging from co-development (half of the countries co-developed the survey together with primary care professionals) to one-off consultations with whom. International guidance facilitated the participation of primary care professionals. Continuous collaborative efforts at the international and national levels can foster a culture of engagement with primary care organisations and individual professionals and enhance meaningful engagement of primary care professionals. [ABSTRACT FROM AUTHOR]

Background: There are increasing expectations for researchers and knowledge users in the health system to use a research partnership approach, such as integrated knowledge translation, to increase the relevance and use of research findings in health practice, programmes and policies. However, little is known about how health research trainees engage in research partnership approaches such as IKT. In response, the purpose of this scoping review was to map and characterize the evidence related to using an IKT or other research partnership approach from the perspective of health research trainees in thesis and/or postdoctoral work. Methods: We conducted this scoping review following the Joanna Briggs Institute methodology and Arksey and O'Malley's framework. We searched the following databases in June 2020: MEDLINE, Embase, CINAHL and PsycINFO. We also searched sources of unpublished studies and grey literature. We reported our findings in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews. Results: We included 74 records that described trainees' experiences using an IKT or other research partnership approach to health research. The majority of studies involved collaboration with knowledge users in the research question development, recruitment and data collection stages of the research process. Intersecting barriers to IKT or other research partnerships at the individual, interpersonal and organizational levels were reported, including lack of skills in partnership research, competing priorities and trainees' "outsider" status. We also identified studies that evaluated their IKT approach and reported impacts on partnership formation, such as valuing different perspectives, and enhanced relevance of research. Conclusion: Our review provides insights for trainees interested in IKT or other research partnership approaches and offers guidance on how to apply an IKT approach to their research. The review findings can serve as a basis for future reviews and primary research focused on IKT principles, strategies and evaluation. The findings can also inform IKT training efforts such as guideline development and academic programme development. [ABSTRACT FROM AUTHOR]

Abstract Africa faces a significant burden of infectious diseases, including Malaria and HIV/AIDS, along with an increasing prevalence of non-infectious diseases such as diabetes and cancer. This dual health challenge is amplified by socioeconomic difficulties, restricted access to healthcare, and lifestyle changes, thus present unique scientific needs. Effectively addressing these issues requires a skilled scientific workforce adept in comprehensive healthcare strategies. This analysis explores the critical landscape of health research in Africa, emphasizing the unique opportunity presented by the continent’s youthful population, projected to reach almost 1 billion by 2050. The youth’s innovative potential and fresh perspectives offer a chance to overcome development barriers in health research. Nevertheless, challenges such as under-resourced education, limited research training, inadequate mentorship, and funding difficulties persist. This paper urgently calls upon African leaders, international partners, and stakeholders to prioritize health research, mobilize funding, forge strategic partnerships, and empower the youth as essential steps to capitalize on the continent’s dynamic youth for breakthrough health outcomes. Such investments are vital not just for health but for the overall economic, social, and strategic growth of the continent. Through shared responsibility and a united effort, the potential of African youth can be harnessed, leading to transformative research, improved health outcomes, and a prosperous future. This perspective represents the collective voice of passionate young researchers and advocates across Africa, calling for a new era of health research on the continent.

Abstract Background Partnerships between Higher Education Institutions (HEIs) in the global north and south have commonly been used as a vehicle to drive global health research and initiatives. Among these initiatives, include health system strengthening, research capacity building, and human resource training in developing countries. However, the partnership functioning of many global north-south partnerships still carry legacies of colonialism through unrecognized behavior patterns, attitudes, and belief systems in how they function. Even with research literature calling for a shift from equality to equity in the functioning of these partnerships, many still struggle with issues of complex and unspoken power dynamics. To understand the successes and challenges of north-south partnerships, this paper explored partnership development and functioning of a northern and multi-southern HEIs partnership focused on nutrition education and research. Methods A qualitative research approach was used; data were collected through in-depth interviews (IDIs) with questions developed from the Bergen Model of Collective Functioning (BMCF). Thirteen IDIs were conducted with partners from all institutions including stakeholders. Findings The partnership was built on the foundation of experiences and lessons of a previous partnership. Partners used these experiences and lessons to devise strategies to improve partnership inputs, communication, leadership, roles and structures, and maintenance and communication tasks. However, these strategies had an impact on partnership functioning giving rise to issues of inequitable power dynamics. The northern partner had two roles: one as an equal partner and another as distributor of project funds; this caused a conflict in roles for this partner. The partners distinguished themselves according to partner resources – two partners were named implementing partners and two named supportive partners. Roles and partner resources were the greatest contributors to power imbalances and caused delays in project activities. Conclusion Using the BMCF to examine partnership dynamics illuminated that power imbalances caused a hierarchical stance in the partnership with northern partners having overall control and power of decision-making in the partnership. This could impact the effectiveness and sustainability of project in the southern institutions going forward.

This study presents a novel approach to enhance cardiovascular disease prediction using a hybrid machine learning (ML) model. Leveraging on Synthetic Minority oversampling techniques (SMOTE) and adaptive boosting (AdaBoost), we integrate these methods with prominent classifiers, including Random Forest (RF), Extreme Gradient Boosting (XGBoost), and Extra Tree (ET). Focused on heart rate data as stress level indicators, our objective is to jointly predict cardiovascular disease, thereby addressing the global health challenge of early detection and accurate risk assessments. In response to class imbalance issues in cardiology databases, our hybrid model, which combines SMOTE and AdaBoost, demonstrates promising results. The inclusion of diverse classifiers, such as RF, XGBoost, and ET, enables the model to capture both linear and nonlinear relationships within the heart rate data, significantly enhancing the prediction accuracy. This powerful predictive tool empowers healthcare providers to identify individuals at a high risk for heart disease, thus facilitating timely interventions. This article underscores the pivotal role of ML and hybrid methodologies in advancing health research, particularly in cardiovascular disease prediction. By addressing the class imbalance and incorporating robust algorithms, our research contributes to the ongoing efforts to improve predictive modeling in healthcare. The findings presented here hold significance for medical practitioners and researchers striving for the early detection and prevention of cardiovascular diseases. [ABSTRACT FROM AUTHOR]

Background: Studying global health problems requires international multidisciplinary teams. Such multidisciplinarity and multiculturalism create challenges in adhering to a set of ethical principles across different country contexts. Our group on health system responses to violence against women (VAW) included two universities in a European high-income country (HIC) and four universities in low-and middle-income countries (LMICs). This study aimed to investigate professional and policy perspectives on the types, causes of, and solutions to ethical challenges specific to the ethics approval stage of the global research projects on health system responses to VAW. Methods: We used the Network of Ethical Relationships model, framework method, and READ approach to analyse qualitative semi-structured interviews (n = 18) and policy documents (n = 27). In March-July 2021, we recruited a purposive sample of researchers and members of Research Ethics Committees (RECs) from the five partner countries. Interviewees signposted policies and guidelines on research ethics, including VAW. Results: We developed three themes with eight subthemes summarising ethical challenges across three contextual factors. The global nature of the group contributed towards power and resource imbalance between HIC and LMICs and differing RECs' rules. Location of the primary studies within health services highlighted differing rules between university RECs and health authorities. There were diverse conceptualisations of VAW and vulnerability of research participants between countries and limited methodological and topic expertise in some LMIC RECs. These factors threatened the timely delivery of studies and had a negative impact on researchers and their relationships with RECs and HIC funders. Most researchers felt frustrated and demotivated by the bureaucratised, uncoordinated, and lengthy approval process. Participants suggested redistributing power and resources between HICs and LMICs, involving LMIC representatives in developing funding agendas, better coordination between RECs and health authorities and capacity strengthening on ethics in VAW research. Conclusions: The process of ethics approval for global research on health system responses to VAW should be more coordinated across partners, with equal power distribution between HICs and LMICs, researchers and RECs. While some of these objectives can be achieved through education for RECs and researchers, the power imbalance and differing rules should be addressed at the institutional, national, and international levels. Three of the authors were also research participants, which had potential to introduce bias into the findings. However, rigorous reflexivity practices mitigated against this. This insider perspective was also a strength, as it allowed us to access and contribute to more nuanced understandings to enhance the credibility of the findings. It also helped to mitigate against unequal power dynamics. [ABSTRACT FROM AUTHOR]

Background: In the European Union, the General Data Protection Regulation (GDPR) plays a central role in the complex health research legal framework. It aims to protect the fundamental right to the protection of individuals' personal data, while allowing the free movement of such data. However, it has been criticized for challenging the conduct of research. Existing scholarship has paid little attention to the experiences and views of the patient community. The aim of the study was to investigate 1) the awareness and knowledge of patients, carers, and members of patient organizations about the General Data Protection Regulation, 2) their experience with exercising data subject rights, and 3) their understanding of the notion of "data control" and preferences towards various data control tools. Methods: An online survey was disseminated between December 2022 and March 2023. Quantitative data was analyzed descriptively and inferentially. Answers to open-ended questions were analyzed using the thematic analysis method. Results: In total, 220 individuals from 28 European countries participated. The majority were patients (77%). Most participants had previously heard about the GDPR (90%) but had not exercised any of their data subject rights. Individual data control tools appeared to be marginally more important than collective tools. The willingness of participants to share personal data with data altruism organizations increased if patient representatives would be involved in the decision-making processes of such organizations. Conclusion: The results highlighted the importance of providing in-depth education about data protection. Although participants showed a slight preference towards individual control tools, the reflection based on existing scholarship identified that individual control holds risks that could be mitigated through carefully operationalized collective tools. The discussion of results was used to provide a critical view into the proposed European Health Data Space, which has yet to find a productive balance between individual control and allowing the reuse of personal data for research. [ABSTRACT FROM AUTHOR]

Background: Successfully recruiting male participants to complete a healthcare related study is important for healthcare study completion and to advance our clinical knowledgebase. To date, most research studies have examined the barriers and facilitators of female participants in longitudinal healthcare-related studies with limited information available about the needs of males in longitudinal research. This systematic review examines the unique barriers and facilitators to male recruitment across longitudinal healthcare-related research studies. Methods: Following PRIMSA guidelines, MEDLINE, Embase, CINAHL and Web of Science databases were systematically searched using the terms recruitment and/or retention, facilitators and/or barriers and longitudinal studies from 1900 to 2023 which contained separate data on males aged 17–59 years. Health studies or interventions were defined longitudinal if they were greater than or equal to 12 weeks in duration with 3 separate data collection visits. Results: Twenty-four articles published from 1976–2023 met the criteria. One-third of the studies had a predominantly male sample and four studies recruited only male participants. Males appear disinterested towards participation in health research, however this lack of enthusiasm can be overcome by clear, non-directive communication, and studies that support the participants interests. Facilitating factors are diverse and may require substantial time from research teams. Conclusions: Future research should focus on the specific impact of these factors across the spectrum of longitudinal health-related studies. Based on the findings of this systematic review, researchers from longitudinal health-related clinical trials are encouraged to consider male-specific recruitment strategies to ensure successful recruitment and retention in their studies. Registration: This systemic review is registered with the PROSPERO database (CRD42021254696). [ABSTRACT FROM AUTHOR]