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Historically, across Europe, data and research on/with racially minoritised groups have not been collected or carried out in a sufficient, adequate, or appropriate manner. Yet, to understand emerging and existing health disparities among such groups, researchers and policymakers must obtain and use data to build evidence that informs decision-making and action on key structural and social determinants of health. This systematic search and review aims to contribute to closing this gap and promote a race-conscious approach to health research, strengthening the utilisation and deployment of data and research on/with racially minoritised groups in Europe. Its ultimate goal is to improve equality and equity in health*. Concretely, the study will do so by reviewing and critically analysing the usage of the concepts of race, ethnicity, and their related euphemisms and proxies in health-related research. It will examine the collection, use, and deployment of data and research on/with racially minoritised groups in this area. The study will focus on Belgium, France, and the Netherlands, three countries with graphical proximity and several similarities, one of which is the limited attention that is given to racism and racial inequalities in health in research and policy. This choice is also justified by practical knowledge of the context and languages. The results of the review will be used to develop guidance on how to use and deploy data and research on/with racially minoritised groups. The review is part of a larger project which aims to promote race-conscious research and data. The project does this by a three-pronged approach which: 1) highlights the need for a race-conscious approach when collecting and using data, carrying out research on/with racially minoritised groups; 2) builds expertise for their effective use and deployment, and; 3) creates a knowledge network and community of practice for public health researchers working in Europe.

ABSTRACTIn this paper, we present a device to generate assessment tools for research projects oriented to collaborate with national health problems. We made use of the Stokes’ model (1997) for knowledge production as an analytical framework that shows the interaction between two dimensions: the consideration of use and the search of fundamental knowledge. We made an explicit effort to incorporate the social participation in science as a complementary dimension to scientific knowledge production, to generate a device based on the Stokes’ model. When operationalizing it, we presented a set of orienting scales that are useful when dealing with the complex task of generating research projects’ assessment tools. We conclude that methodological proposals for research evaluation are much needed and that devices like this should be taken as a part of human decision-making processes, not as a substitute for them.

Bronstein and Nyachowe recently argued that the conditions for the lawful processing of personal information, as provided in the Protection of Personal Information Act 4 of 2013 (POPIA), do not apply to health research in South Africa. This article critically analyses the authors’ interpretation of section 3(2)(b) of POPIA and challenges two of its aspects.

Traditionally, research has been divided according to its methodology into quantitative and qualitative. Mixed research methodology combines both methods and has established itself as a third approach, allowing to comprehensively address high-complexity research problems. Although there are various definitions of mixed methods research, they all share aspects such as the collection and analysis of both quantitative and qualitative data and the integrated interpretation of the results within the same research. This type of research is an important tool to address the complexity of health sciences, allowing the understanding and integration of quantitative data with experience-based aspects. In this way, a broad and deep perspective of health problems is achieved, providing a solution to sanitary policies and services. During the development of mixed methods research, there are key stages where both approaches can be integrated depending on the objectives set by the investigators. Although mixed methods studies may differ widely, general models have been identified to guide the development of a single specific design. These models are classified according to the priority of each approach, the sequence in which each approach will be executed, the level and timing of data integration, and the purpose of integrating the data for the study.

This article examines the methodological implications of employing intersectional principles in qualitative health research conducted in migration contexts, specifically focusing on a doctoral research project on return migration and reunited couples in Mexico. The article highlights the integration of social justice and community-based research perspectives within an intersectional lens. Five key areas are examined, including recognizing diversity and agency among women who stay behind, navigating intersectional identities, understanding positionality, and advocating for populations made vulnerable by inadequate policies, navigating power dynamics and multiple social locations, and empowering the community through intersectional research. The application of intersectionality challenges homogenizing narratives, emphasizing the agency and resilience of women who stay behind. Reflexivity is crucial in mitigating biases and deepening insights, while collaboration with a local researcher enhances understanding of power dynamics. By empowering the community through advisory committees and culturally relevant dissemination, I aimed to amplify community member voices and promote social justice. This article serves as a valuable resource for researchers conducting intersectional qualitative health research in rural settings, offering guidance on integrating a strength-based approach, fostering intersectional reciprocity, and navigating positionalities. [ABSTRACT FROM AUTHOR]

Under Article 24 of the Convention on the Rights of the Child (CRC), children have the right to the highest attainable standard of health. One component of this right that has received little attention is the connection between children's health and their participation in health-related research. This represents a missed opportunity in the full realisation of the right to health. This paper accordingly argues that Article 24 should obligate or incentivise State Parties to create more research opportunities for children in implementing this right. It explores the links between paediatric research and children's health, highlighting the impacts of the lack of research on the paucity or absence of many treatment and prevention options for childhood diseases. It also considers the application of other rights which may be implicated in paediatric research. While paediatric health-related research is imperative, it must occur within a framework which respects all children's rights. [ABSTRACT FROM AUTHOR]

Sex and gender are fundamental aspects of health and wellbeing. Yet many research studies fail to consider sex or gender differences, and even when they do this is often limited to merely cataloguing such differences in the makeup of study populations. The evidence on sex and gender differences is thus incomplete in most areas of medicine. This article presents a roadmap for the systematic conduct of sex- and gender-disaggregated health research. We distinguish three phases: the exploration of sex and gender differences in disease risk, presentation, diagnosis, treatment, and outcomes; explaining any found differences by revealing the underlying mechanisms; and translation of the implications of such differences to policy and practice. For each phase, we provide critical methodological considerations and practical examples are provided, taken primarily from the field of cardiovascular disease. We also discuss key overarching themes and terminology that are at the essence of any study evaluating the relevance of sex and gender in health. Here, we limit ourselves to binary sex and gender in order to produce a coherent, succinct narrative. Further disaggregation by sex and gender separately and which recognises intersex, non-binary, and gender-diverse identities, as well as other aspects of intersectionality, can build on this basic minimum level of disaggregation. We envision that uptake of this roadmap, together with wider policy and educational activities, will aid researchers to systematically explore and explain relevant sex and gender differences in health and will aid educators, clinicians, and policymakers to translate the outcomes of research in the most effective and meaningful way, for the benefit of all. [ABSTRACT FROM AUTHOR]

Background: Racially marginalised groups are underserved in healthcare and underrepresented in health research. Patient and public involvement and engagement (PPIE) is established as the method to ensure equity in health research. However, methods traditionally employed in PPIE can lead to the exclusion of some communities and exacerbation of existing inequalities, highlighting the need to develop inclusive processes for more inclusive community involvement in health research. We aimed to produce guidance to promote good practice for inclusive involvement of racially marginalised community groups in health research via public and community involvement and engagement. Methods: The CHecklist for Inclusive COmmunity involvement in health research (CHICO) was co-produced by researchers and three Bristol-based community organisations: Dhek Bhal, My Friday Coffee Morning—Barton Hill, and Malcolm X Elders. After initial conversations and link building with community leaders to develop relationships, researchers attended at least three meetings with each community group to discuss preferred approaches to involvement. Each community group had a different format, and discussions were open and tailored to fit the groups preferences. The meetings were held in the community groups' usual meeting venue. Notes from meetings were reviewed by researchers to identify key themes, which were used to inform the creation of a draft illustration which was then taken back to the community groups for refinement and used to inform the development of written guidance and the final illustration. Results: Checklist items were structured into three stages: (1) building relationships, (2) reciprocal relationships and (3) practicalities. Stage 1 highlights the importance of building trust with the community group over time through regular visits to community venues and talking to people informally to understand the history of the group, their preferences and needs, and topics that are likely to be of interest to them. Stage 2 focusses on maintaining a reciprocal relationship and understanding how to best to give back to the community. Stage 3 provides guidance on the practicalities of designing and running inclusive community-based involvement activities, including consideration of the venue, format, communication-style, language requirements, social activities, and provision of food. Conclusions: Our co-produced checklist can guide researchers in how to involve people from different ethnicities in health research that is relevant to their community. Plain English summary: Health research needs to be for everyone. For this to happen, people from all backgrounds need to be involved. However, people from ethnic minority backgrounds are often not involved in the design of health research. We wanted to find out how researchers and community groups can work together to make the research process more inclusive. Researchers worked with three community groups in Bristol. These were South Asian, African Caribbean and (majority) Somali community groups. One researcher talked with community leaders to find out if the interests of the research unit was relevant to community members and to understand how each group would prefer to work. Following this, at least three meetings were held with each group. After these meetings, we looked at what was talked about. We suggest that researchers involving community groups in health research follow three key steps. Step 1 is making relationships and covers the importance of building trust with the community. This should be through talking with community leaders and regular visits to the group to get to know members before asking for input. Step 2 is about how to best to give back to the community. This is important to make sure that relationships are fair. Step 3 is about how to design and run activities. This includes thinking about the venue, language needs, social activities, and providing food. Our suggestions can help researchers and community groups to work together on health research. We have made an illustration of our findings for sharing. [ABSTRACT FROM AUTHOR]

Highly effective direct-acting antiviral (DAA) treatments for hepatitis C have led to strategic goals promoting hepatitis C virus (HCV) cure particularly in focus populations including persons with HIV/HCV coinfection. Implementing treatment more broadly requires both clinic-level and public health approaches such as those inherent in Data to Care (D2C) originally developed to improve the treatment cascade for persons with HIV (PWH). We used D2C methods to characterize and improve HCV treatment for persons with HIV/HCV coinfection among 11 HIV clinics in Connecticut cities with high PWH prevalence. Providers who were local champions in HCV treatment were recruited to participate along with clinic data staff and were key to quality improvement via practice transformation. We developed a methodology whereby clinic-generated lists of PWH receiving care from 2009 to 2018 were matched by CT Department of Public Health (DPH) against the state-wide HCV surveillance system. The resultant coinfection list was reviewed by clinical staff who designated HCV treatment status, enabling creation of individual clinic-level HCV treatment cascades. Data from DPH, especially current residency and deaths, enabled better characterization and allowed for refinement of longitudinal cascades. There were 1,496 patients with HIV/HCV coinfection. Sustained virologic response (SVR) rates varied by clinic (range, 44%–100%) with an aggregate SVR rate of 71% in September 2020. SVR rates improved during the project through a combination of increased treatment initiation/completion as well as data clean-up including serial updates of patient treatment status. Lack of treatment initiation was associated with being female (odds ratio [OR] = 2.18) and not having HIV viral suppression (OR = 3.24). [ABSTRACT FROM AUTHOR]

In response to disproportionately high rates of infant mortality and preterm birth among women of color and women in poverty in Fresno County, California, community and academic partners coordinated a community-based participatory research (CBPR) project with local residents. Social isolation and stress, inaccessible prenatal care, and dissatisfaction with care experiences were identified as leading predictors of poor birth outcomes. The PRECEDE-PROCEED framework was used to lead the CBPR effort that resulted in the development of a model of group prenatal care, named Glow! Group Prenatal Care Program (Glow! Program). Group prenatal care (GPNC), which focuses on pregnancy health assessments, education, and peer support, has the potential to address the health and social priorities of women during pregnancy. As a result of the employed CBPR process and the extensive participation from stakeholders, this modified GPNC model responds to the unique needs of the at-risk community members, the agencies aiming to improve maternal-child health experiences and outcomes, and the prenatal care providers offering it to their patients. The methods from this study can be applied in the design and implementation of community-based health care interventions. Returning to community partners throughout the design, implementation, and evaluation phases underscored that health care interventions cannot be designed in silos, and require flexibility to respond to factors that promote improved maternal and infant outcomes, which affect the end goal for the intervention. [ABSTRACT FROM AUTHOR]

The Alberta Indigenous Mentorship in Health Innovation (AIM-HI) Network was developed by Indigenous faculty members as an intergenerational mentorship programme for First Nations, Métis and Inuit (FNMI) scholars engaged in health research training programmes. Through activities and funding programmes, the AIM-HI Network provided opportunities for these scholars to strengthen their personal and professional resources and gain resilience along paths to academic success. While generating evidence on wise practices for Indigenous mentorship, we also advocated for systemic change to enable Indigenous scholar promotion and success in academia and in health research more broadly. In this article, we describe the philosophical approach to mentorship and the organizational structure to deliver aligning activities and supports to students. We also reflect on the successes and learnings from our leadership of the Network, including the impact of the coronavirus-19 pandemic on FNMI scholars, and the ways in which the Network adapted to address these challenges. [ABSTRACT FROM AUTHOR]

The literature on patient public involvement and engagement (PPIE) in health research has grown significantly in the last decade, with a diverse range of definitions and topologies promulgated. This has led to disputes over what the central functions and purpose of PPIE in health research is, and this in turn makes it difficult to assess and evaluate PPIE in practice. This paper argues that the most important function of PPIE is the attempt to make health research more democratic. Bringing this function to the fore and locating PPIE in the wider context of changes in contemporary forms of democratic engagement provides greater conceptual clarity over what PPIE in research should be trying to achieve. Conceptualizing PPIE as a form of democratization has a number of benefits. First, theories of what are appropriate, normatively justifiable and workable criteria for PPIE practices can be developed, and this can provide tools to address the legitimacy and accountability questions that have troubled the PPIE community. Second, this work can be used to form the basis of a research agenda to investigate how PPIE in health research operates, and how it can facilitate and/or improve democratic processes in health research. [ABSTRACT FROM AUTHOR]

The article proposes that the enactment of patient-centered research (PCR) may serve other ends. It endorses the warning that participatory action research may be instrumentalized and subordinated and raises the political aspect of PCR in tokenism. It suggests the evaluation of patient/consumer participation in research via measures of stakeholder engagement and calls for public funding for universities determined by neoliberal governmental policies and imperatives to efficiency.

Collaboration between academic researchers and community members, clinicians, and organizations is valued at all levels of the program development process in community-engaged health research (CEnR). This descriptive study examined a convenience sample of 30 projects addressing training in CEnR methods and strategies within the Clinical and Translational Science Awards (CTSA) consortium. Projects were selected from among posters presented at an annual community engagement conference over a 3-year period. Study goals were to learn more about how community participation in the design process affected selection of training topics, how distinct community settings influenced the selection of training formats, and the role of evaluation in preparing training participants to pursue future health research programming. Results indicated (1) a modest increase in training topics that reflected community health priorities as a result of community (as well as academic) participation at the program design stage, (2) a wide range of community-based settings for CEnR training programs, and (3) the majority of respondents conducted evaluations, which led in turn to revisions in the curricula for future training sessions. Practice and research implications are that the collaboration displayed by academic community teams around CEnR training should be traced to see if this participatory practice transfers to the design of health promotion programs. Second, collaborative training design tenets, community formats and settings, and evaluation strategies should be disseminated throughout the CTSA network and beyond. Third, common evaluative metrics and indicators of success for CEnR training programs should be identified across CTSA institutions.

Health researchers are increasingly turning to qualitative research for a nuanced understanding of complex health phenomena. The quality and rigor of qualitative research relies on individual data collector skills, yet few guidelines exist for training multidisciplinary, multi-institution qualitative research teams. Specific guidance is needed on qualitative research practices that ensure scientific rigor by optimizing diverse experience and expertise across research centers. We describe our systematic approach to training a cohort of 15 focus group moderators from seven universities in the Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium's Study of Habits, Attitudes, Realities, and Experiences (SHARE). SHARE's aim was to explore women and girls' experiences, perceptions, beliefs, knowledge, and behaviors related to bladder health and function across the life course. Drawing on adult education and action-learning best practices, a three-phase curriculum was designed to maximize moderator proficiency and qualitative research expertise. The phases involved online, interactive web-based education, in-person didactic training with experiential components, and tailored supplemental online training. Evaluative feedback was collected before, during, and after the training. Feedback was used to identify emergent training needs. This training approach may be used by transdisciplinary research teams conducting multisite research to assure qualitative research credibility and trustworthiness.

Patient and family engagement has become a widely accepted approach in health care research. We recognize that research conducted in partnership with people with relevant lived experience can substantially improve the quality of that research and lead to meaningful outcomes. Despite the benefits of patient-researcher collaboration, research teams sometimes face challenges in answering the questions of how patient and family research partners should be compensated, due to the limited guidance and lack of infrastructure for acknowledging partner contributions. In this paper, we present some of the resources that might help teams to navigate conversations about compensation with their patient and family partners and report how existing resources can be leveraged to compensate patient and family partners fairly and appropriately. We also present some of our first-hand experiences with patient and family compensation and offer suggestions for research leaders, agencies, and organizations so that the health care stakeholders can collectively move toward more equitable recognition of patient and family partners in research.

Abstract Background Health Research Capacity Building (HRCB) is key to improving research production among health workers in LMICs to inform related policies and reduce health disparities in conflict settings. However, few HRCB programmes are available in the MENA region, and few evaluations of HRCB globally are reported in the literature. Methods Through a qualitative longitudinal design, we evaluated the first implementation of the Center for Research and Education in the Ecology of War (CREEW) fellowship. Semi-structured interviews were conducted with fellows (n = 5) throughout the programme at key phases during their completion of courses and at each research phase. Additional data was collected from supervisors and peers of fellows at their organizations. Data were analysed using qualitative content analysis and presented under pre-identified themes. Results Despite the success of most fellows in learning on how to conduct research on AMR in conflict settings and completing the fellowship by producing research outputs, important challenges were identified. Results are categorized under predefined categories of (1) course delivery, (2) proposal development, (3) IRB application, (4) data collection, (5) data analysis, (6) manuscript write-up, (7) long-term effects, and (8) mentorship and networking. Conclusion The CREEW model, based on this evaluation, shows potential to be replicable and scalable to other contexts and other health-related topics. Detailed discussion and analysis are presented in the manuscript and synthesized recommendations are highlighted for future programmes to consider during the design, implementation, and evaluation of such programmes.

Abstract Background The UK National Health Service (NHS) is ideally placed to undertake research. The UK Government recently launched its vision of research within the NHS to improve research culture and activity amongst its staff. Currently, little is known about the research interest, capacity and culture of staff in one Health Board in South East Scotland and how their attitudes to research may have changed as a result of the SARS-CoV-2 pandemic. Methods We used the validated Research Capacity and Culture tool in an online survey of staff working in one Health Board in South East Scotland to explore attitudes to research at the organisation, team and individual level together with involvement in, barriers to and motivators to engage in research. Questions included changes in attitude to research as a result of the pandemic. Staff were identified by professional group: nurses/midwives, medical/dental, allied health professionals (AHP), other therapeutic and administrative roles. Median scores and interquartile ranges were reported and differences between groups assessed using the Chi-square and Kruskal-Wallis tests with P

Abstract Objectives Focus groups used for data collection in health research are increasingly conducted online. In two multi-center health research projects, we applied available methodological instructions for synchronous online focus groups (SOFGs). We describe necessary changes and specifications regarding the planning (recruitment, technology, ethics, appointments) and conduct (group composition, moderation, interaction, didactics) to enhance knowledge about the planning and conduct of SOFGs. Results Recruiting online proved to be challenging and necessitated direct and analogue recruiting, too. To ensure participation, less digital and more individual formats may be offered, e.g. telephone calls. Explaining verbally the specifics of data protection and anonymity in an online setting can foster participants’ confidence to actively engage in the discussion. Two moderators, one moderating, one supporting technically, are advisable in SOFGs, however, due to limited nonverbal communication, roles and tasks need to be defined beforehand. Participant interaction is central to focus groups in general, but sometimes difficult to achieve online. Hence, smaller group size, sharing of personal information and moderators increased attention to individual reactions appeared helpful. Lastly, digital tools such as surveys and breakout rooms should be used with caution, as they easily inhibit interaction.

Introduction Data linkage for health research purposes enables the answering of countless new research questions, is said to be cost effective and less intrusive than other means of data collection. Nevertheless, health researchers are currently dealing with a complicated, fragmented, and inconsistent regulatory landscape with regard to the processing of data, and progress in health research is hindered. Aim We designed a qualitative study to assess what different stakeholders perceive as ethical and legal obstacles to data linkage for health research purposes, and how these obstacles could be overcome. Methods Two focus groups and eighteen semi-structured in-depth interviews were held to collect opinions and insights of various stakeholders. An inductive thematic analysis approach was used to identify overarching themes. Results This study showed that the ambiguity regarding the `correct' interpretation of the law, the fragmentation of policies governing the processing of personal health data, and the demandingness of legal requirements are experienced as causes for the impediment of data linkage for research purposes by the participating stakeholders. To remove or reduce these obstacles authoritative interpretations of the laws and regulations governing data linkage should be issued. The participants furthermore encouraged the harmonisation of data linkage policies, as well as promoting trust and transparency and the enhancement of technical and organisational measures. Lastly, there is a demand for legislative and regulatory modifications amongst the participants. Conclusions To overcome the obstacles in data linkage for scientific research purposes, perhaps we should shift the focus from adapting the current laws and regulations governing data linkage, or even designing completely new laws, towards creating a more thorough understanding of the law and making better use of the flexibilities within the existing legislation. Important steps in achieving this shift could be clarification of the legal provisions governing data linkage by issuing authoritative interpretations, as well as the strengthening of ethical-legal oversight bodies.

The history of military medicine and research is rife with examples of novel treatments and new approaches to heal and cure soldiers and others impacted by war’s devastation. In the 21st century, new threats, like climate change, are combined with traditional threats, like geopolitical conflict, to create novel challenges for our strategic interests. Extreme and inaccessible environments provide heightened risks for warfighter exposure to dangerous bacteria, viruses, and fungi, as well as exposure to toxic substances and extremes of temperature, pressure, or both providing threats to performance and eroding resilience. Back home, caring for our veterans is also a healthcare priority, and the diseases of veterans increasingly overlap with the health needs of an aging society. These trends of climate change, politics, and demographics suggest performance evaluation and resilience planning and response are critical to assuring both warfighter performance and societal health. The Cleveland ecosystem, comprising several hospitals, a leading University, and one of the nation’s larger Veteran’s Health Administration systems, is ideal for incubating and understanding the response to these challenges. In this review, we explore the interconnections of collaborations between Defense agencies, particularly Air Force and Army and academic medical center-based investigators to drive responses to the national health security challenges facing the United States and the world.

Personal information in health research commands utmost protection while also preserving the growth of health research. This paper aims to establish which legislation applies when processing personal information for health research. South Africa regulates health research on human subjects through a network of Human Research Ethics Committees. The Protection of Personal Information Act No. 4 of 2013 (POPIA) has recently come into force. Section 2(3)(b) of POPIA provides that POPIA does not apply where other legislation creates ‘more extensive’ conditions for the lawful processing of personal information than Chapter 3 of POPIA does. We show that the provisions of the sectoral legislation on health are more extensive than the conditions in Chapter 3 of POPIA and hence the sectoral legislation prevails. This simplifies the regulation of health research. One of the implications of this finding is that the definition of broad consent in the sectoral legislation for health research should be applied to the exclusion of the consent provisions in POPIA.

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]

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]

Ensuring the growth and development of the Māori health research workforce is key to achieving health equity for Māori and enabling positive change for all New Zealanders. The purpose of this study was to identify enablers and barriers to research for Māori staff in a large health organisation, and to understand how research is developed and undertaken. A Kaupapa Māori mixed-methods study was undertaken, using an electronic survey comprised of quantitative data and open-ended responses delivered to all Māori staff at the Waikato District Health Board. Following the survey were 10 one on one interviews. Survey data were analysed using descriptive statistics and open-ended responses summarised. A descriptive thematic analysis was undertaken of the interview data. Each of the interview responses was coded and five themes emerged. Frontline Māori staff affirmed their desire to conduct, design, and undertake health research. Challenges to staff included a lack of information on research opportunities, unclear processes for initiating research, and lack of support and resource. The evidence from participants provides insights into Māori health research priorities, considerations for those wanting to undertake research, and solutions for informing, building, and sustaining the Māori health research workforce.Glossary of Māori words: Aotearoa: Māori name for New Zealand; āwhinatia i tāku hapū: help my hapū; hapū: sub-tribe; iwi: tribe; kaumatua: elder; Kaupapa Māori: Māori ideology incorporating the knowledge, skills, attitudes and values of Māori society; kia ora: greeting; koinā te whakamaatauranga nēra: power of knowledge; hohā: nuisance; hui: meeting; Kaitiaki: Māori cultural support team for patients; Kīngitanga: Māori King movement; Māori: Indigenous peoples of Aotearoa; marae: ancestral meeting house; mōhio ki tēra mahi: knowledgeable in that area; Te Ao Māori: Māori world view; Te Ika-a-Māui: North Island; Te Reo Māori: Māori language; Te Tiriti o Waitangi: The Treaty of Waitangi; Te Whatu Ora: Health New Zealand; whakahoki ki tāku marae: to go back to my marae; wānanga: workshop; whanau: family [ABSTRACT FROM AUTHOR]

Photovoice offers creative participatory action methods for conveying community strengths and challenges with the goal of addressing health inequities. Accelerated by COVID-19 restrictions, photovoice has increasingly become virtual, and this shift has given rise to new considerations including navigating online recruitment and data collection, e-participatory action trends and working with multi-site large qualitative data sets. Within these contexts, the current article discusses the case for and against virtual photovoice, drawing from a large study comprising 110 men's experiences of, and perspectives about, equitable and sustainable intimate partner relationships. The findings are shared across three themes. The first theme, e-Efficiencies and concessions contrasts increased recruitment reach and data collection cost-savings with vulnerabilities to phishing and challenges for working with participants' wide-ranging internet literacies and practices. Theme two, Participatory action changed, chronicles the participants' varied relationships to photography including sourcing third-party and archived photographs. Revealed also were privacy concerns whereby some participants opted for audio only interviews and/or restricted the use of their photographs. The third theme, Reckoning breadth and depth in a large dataset, discusses emergent study design considerations including analytics for interpreting and contextually representing large multi-site projects that are made possible through virtual photovoice. While technological advances and COVID-19 have forged photovoice virtually, the case for and against this trend reveals complex considerations that will likely manifest a continuum of approaches ranging virtual, hybrid and in-person models. In summary, we suggest that integral to weighing the case for and against virtual photovoice researchers will need to thoughtfully adapt to changing technologies, as well as potential post COVID-19 tilts for returning to in-person. [ABSTRACT FROM AUTHOR]

Background: Patient and public involvement (PPI) in health research may improve both the relevance and quality of the research. There is however a lack of research investigating the experiences, attitudes and barriers towards PPI in clinical research in Norway. The Norwegian Clinical Research Infrastructure Network therefore conducted a survey among researchers and PPI contributors aiming to investigate experiences with PPI and identify current challenges for successful involvement. Methods: Two survey questionnaires were developed and distributed in October and November 2021. The survey targeting 1185 researchers was distributed from the research administrative system in the Regional Health Trusts. The survey targeting PPI contributors was distributed through Norwegian patient organisations, regional and national competence centers. Results: The response rate was 30% among researchers and was unobtainable from PPI contributors due to the survey distribution strategy. PPI was most frequently used in the planning and conduct of the studies, and less utilized in dissemination and implementation of results. Both researchers and user representatives were generally positive to PPI, and agreed that PPI might be more useful in clinical research than in underpinning research. Researchers and PPI contributors who reported that roles and expectations were clarified in advance, were more likely to experience a common understanding of roles and responsibilities in the research project. Both groups pointed to the importance of earmarked funding for PPI activities. There was a demand for a closer collaboration between researchers and patient organisations to develop accessible tools and effective models for PPI in health research. Conclusions: Surveys among clinical researchers and PPI contributors indicate overall positive attitudes towards PPI in clinical research. However, more resources, such as budget, time, and accessible tools, are needed. Clarifying roles and expectations, and creating new PPI models under resource constraints can enhance its effectiveness. PPI is underutilized in disseminating and implementing research results, presenting an opportunity for improving healthcare outcomes. Plain English summary: Patient and public involvement (PPI) in health research can make the research more relevant and of better quality. However, in Norway, there has not been much research on the experiences, attitudes, and barriers related to PPI in clinical research. To address this gap, we conducted a survey among researchers and PPI contributors to understand their experiences and identify current challenges. We found that PPI was most common during planning and execution of studies. PPI was less used in the process of sharing the results from the studies, and in the process of putting the findings into practice. Those who reported that roles and expectations were clarified in advance were more likely to have a shared understanding of their roles and responsibilities in the research project. Both groups emphasized the importance of funding for PPI activities. There was also a desire for closer collaboration between researchers and patient organisations to develop accessible tools and for PPI. In summary, the survey revealed a generally positive attitude towards PPI in health research. However, more resources, such as budget, time, and accessible tools, are needed. Clarification of roles and expectations also stand out a crucial part of the PPI process, and should receive much attention in all research projects where PPI is used. [ABSTRACT FROM AUTHOR]

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]

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Background: Patients experiencing systemic patterns of disadvantage, such as racial/ethnic minorities and those with limited English proficiency, are underrepresented in research. This is particularly true for large pragmatic trials of potentially sensitive research topics, such as advance care planning (ACP). It is unclear how phone outreach may affect research participation by underrepresented individuals. Objective: To assess the effect of phone outreach, in addition to standard mail survey recruitment, in a population-based ACP pragmatic trial at three academic health systems in California. Design: Retrospective cohort study Patients: Primary care patients with serious illness were mailed a survey in their preferred language. Patients who did not initially respond by mail received up to three reminder phone calls with the option of survey completion by phone. Main measures: Effect of phone outreach on survey response rate associated with respondent demographic characteristics (e.g., Social Vulnerability Index [SVI], range 0 (low) to 1 (high)). Results: Across the health systems, 5998 seriously ill patients were mailed surveys. We obtained completed surveys from 1215 patients (20% response rate); 787 (65%) responded after mail alone and 428 (35%) participated only after phone outreach. Patients recruited after phone outreach compared to mail alone were more socially vulnerable (SVI 0.41 v 0.35, P < 0.001), were more likely to report being a racial/ethnic minority (35% v 28%, P = 0.006), and non-English speaking (16% v 10%, P = 0.005). Age and gender did not differ significantly. The inclusion of phone outreach resulted in a sample that better represented the baseline population than mail alone in racial/ethnic minority (28% mail alone, 30% including phone outreach, 36% baseline population), non-English language preference (10%, 12%, 15%, respectively), and SVI (0.35, 0.37, 0.38, respectively). Conclusions: Phone outreach for a population-based survey in a pragmatic trial concerning a potentially sensitive topic significantly enhanced recruitment of underrepresented seriously ill patients. [ABSTRACT FROM AUTHOR]

Food pantry clients experience many health disparities, including elevated incidence of diabetes, heart disease, and other nutrition-related conditions. Nutrition education interventions in the form of a nudge can be an effective method to increase nutrition knowledge and healthy pantry food selection. Currently there is no nutrition education program at the largest food pantry in Alaska. The goal of this project was to develop a nutrition intervention in the form of a nudge to increase the selection of nutritious foods by pantry clients. Methods included the development of nudges, or environmental cues, within the pantry as well as client education handouts and recipes for clients to take home. Implications for practice include the potential to increase staff and client knowledge and nutrition education, as well as for impacting the overall health and food security of the clients and their families. Additional implications include the availability of the program and resources for other food pantries across the state to customize for use in their facilities. After the program has been implemented, it can be evaluated across each site and its efficacy determined to implement into policy. [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]

Since 2005, health insurance (HI) coverage in India has significantly increased, largely because of the introduction of government-funded pro-poor insurance programs. As a result, the determinants of HI enrollment and their relative importance may have changed. Using National Family Health Survey (NFHS)-4 data, collected in 2015–2016, and employing a Probit regression model, we re-examine the determinants of household HI enrollment. Then, using a multinomial logistic regression model, we estimate the relative risk ratio for enrollment in different HI schemes. In comparison to the results on the determinants of HI enrollment using the NFHS data collected in 2005–2006, we find a decrease in the wealth gap in public HI enrollment. Nonetheless, disparities in enrollment remain, with some changes in those patterns. Households with low assets have lower enrollments in private and community-based health insurance (CBHI) programs. Households with a higher number of dependents have a higher likelihood of HI enrollment, especially in rural areas. In rural areas, poor Scheduled Caste and Scheduled Tribe households are more likely to be enrolled in public HI than the general Caste households. In urban areas, Muslim households have a lower likelihood of enrollment in any HI. The educational attainment of household heads is positively associated with enrollment in private HI, but it is negatively associated with enrollment in public HI. Since 2005–2006, while HI coverage has improved, disparities across social groups remain. [ABSTRACT FROM AUTHOR]

BACKGROUND: Implementation science (IS) has the potential to serve an important role in encouraging the successful uptake of evidence-based interventions. The current state of IS awareness and engagement among health researchers, however, is relatively unknown. METHODS: To determine IS awareness and engagement among health researchers, we performed an online survey of health researchers in the USA in 2018. Basic science researchers were excluded from the sample. Engagement in and awareness of IS were measured with multiple questionnaire items that both directly and indirectly ask about IS methods used. Unrecognized IS engagement was defined as participating in research using IS elements and not indicating IS as a research method used. We performed simple logistic regressions and tested multivariable logistic regression models of researcher characteristics as predictors of IS engagement. RESULTS: Of the 1767 health researchers who completed the survey, 68% stated they would be able to describe IS. Only 12.7% of the population self-identified as using IS methods. Of the researchers not self-identifying as using IS methods, 86.4% reported using the IS elements at least some of the time. Nearly half (47.9%) reported using process/implementation evaluation, 89.2% use IS measures, 27.3% use IS frameworks, and 75.6% investigate or examine ways to integrate interventions into routine health settings. IS awareness significantly reduced the likelihood of all measures of unrecognized IS engagement (aOR 0.13, 95% CI 0.07 to 0.27, p < 0.001). CONCLUSION: Overall, awareness of IS is high among health researchers, yet there is also a high prevalence of unrecognized IS engagement. Efforts are needed to further disseminate what constitutes IS research and increase IS awareness among health researchers.

Objectives. To assess tobacco product availability, advertised discounts, and prices in rural and nonrural stores, comparing results for two definitions of rural. Method. This geospatial study linked data from marketing surveillance in a representative sample of licensed tobacco retailers in California (n = 1,276) and categorized rural/nonrural stores at the county and tract levels. Data were collected from January to March, 2017, and mixed-models analyses tested for differences by location (rural vs. nonrural). Results. Compared to nonrural stores, rural-county stores were 2.1 (95% confidence interval [CI; 1.2, 3.6]) times more likely to sell chewing tobacco and 2.5 (95% CI [1.4, 4.2]) times more likely to sell roll-your-own. Rural-county stores sold larger packs of cigarillos for less than $1 (coefficient = 0.22, 95% CI [0.05, 0.39]) and charged less for the cheapest cigarette pack regardless of brand (estimated mean difference = $-0.21, 95% CI [-0.39, -0.03]). Contrary to expectation, a popular brand of chewing tobacco cost more in rural-county stores. A tract-level definition of rural reclassified only 1 in 10 stores, and did not substantially alter the results. Overall, 32.9% of stores advertised discounts on chewing tobacco, but this was more common in rural than nonrural census tracts (adjusted odds ratio = 1.81, 95% CI [1.14, 2.88]). Discussion. Evidence that $1 buys more cigarillos in rural-county stores than elsewhere adds to health equity concerns that the prevalence of cheap, flavored tobacco is not limited to neighborhoods characterized by socioeconomic disadvantage, higher proportions of African Americans, and higher proportions of school-age youth. Policies that focus on the retail environment for tobacco are needed to make tobacco less attractive and more costly everywhere, including rural areas.

Abstract Aim To determine the effectiveness of despatching an electronic reminder of participation in screening for gestational diabetes. The reminder was sent to the women 1–8 years after delivery. Methods A registry-based, randomized controlled trial in the North Denmark Region among women with gestational diabetes. Randomization was made, which included seven groups stratified by the child’s birth year (2012–2018). The intervention group received standard care supplemented by an electronic reminder through a secure nationwide email system (n = 731), while the control group received only standard care (n = 732). The primary outcome was based on blood testing for diabetes (OGTT, HbA1c or fasting P-glucose). Results A total of 471 (32.1%) women participated in screening. The primary outcome was experienced by 257 women (35.1%) in the intervention group and 214 women (29.2%) in the control group. The effect of the reminder seemed to increase with recipient’s age, non-western origin, urban dwelling, and multiparity. Of those who participated in follow-up screening, 56 (3.8%) were diagnosed with type 2 diabetes. Conclusion Electronic reminders, based on the principles of informed choice and patient-centred care, to women have been shown to support life-long participation in follow-up screening. Attempts to further stimulation of coverage could however be considered. Trail registration ISRCTN registry (22/04/2022, ISRCTN23558707).

Population dynamics and health risk factors keep changing in the KSA, requiring continuous research and quality data. We aimed to review the current status of population health data, outline the available opportunities for data utilization, and provide recommendations for population data-related improvement initiatives. We provide practical solutions to support the collection, linkage, quality assurance, and governance of population health data.

Background Regional cooperation on health in Africa is not new. The institutional landscape of regional cooperation for health and health research, however, has seen important changes. Recent health emergencies have focussed regional bodies’ attention on supporting aspects of national health preparedness and response. The state of national health research systems is a key element of capacity to plan and respond to health needs – raising questions about the roles African regional bodies can or should play in strengthening health research systems.Methods We mapped regional organisations involved in health research across Africa and conducted 18 interviews with informants from 15 regional organisations. We investigated the roles, challenges, and opportunities of these bodies in strengthening health research. We deductively coded interview data using themes from established pillars of health research systems – governance, creating resources, research production and use, and financing. We analysed organisations’ relevant activities in these areas, how they do this work, and where they perceive impact.Results Regional organisations with technical foci on health or higher education (versus economic or political remits) were involved in all four areas. Most organisations reported activities in governance and research use. Involvement in governance centred mainly around agenda-setting and policy harmonisation. For organisations involved in creating resources, activities focused on strengthening human resources, but few reported developing research institutions, networks, or infrastructure. Organisations reported more involvement in disseminating than producing research. Generally, few have directly contributed to financing health research. Informants reported gaps in research coordination, infrastructure, and advocacy at regional level. Finally, we found regional bodies’ mandates, authority, and collaborations influence their activities in supporting national health research systems.Conclusion Continued strengthening of health research on the African continent requires strategic thinking about the roles, comparative advantages, and capability of regional organisations to facilitate capacity and growth of health research systems.

The abstracts published in this supplement were presented at the 48th annual Advocate Aurora Scientific Day on May 25, 2022. This scholarly symposium provides a closed forum for sharing preliminary results from research studies conducted by faculty physicians and nurses, fellows, residents, scientists, and other health professionals associated with U.S. Midwest-based health system Advocate Aurora Health, publisher of the Journal of Patient-Centered Research and Reviews.

Introduction: Historically, medical studies have underrepresented female participants and most research data have been collected from males and generalized to other genders. This article aims to determine if there is a sex and/or gender gap in recent Australian health research. Methods: This descriptive cross-sectional study of the published literature examines recent Australian-based clinical trials for inclusion of sex and gender. Medians and interquartile ranges (IQRs) were calculated for study sample sizes and female:male representation. Proportion of sex and/or gender was analyzed by the clinical specialty of the trials. t-Tests were used to ascertain significance of any difference in recruitment of female and males. Results: A total of 88 articles were included in the analysis. Most studies (n?=?63) were randomized clinical controlled trials. Overall women constituted 55% (IQR 30% of all participants). Of the 71 mixed-sex studies, only 8.9% (n?=?7) analyzed the data by sex. Women were significantly underrepresented in cardiology and nephrology studies and overrepresented in psychiatry, care of the elderly, and orthopedic studies. Conclusions: When analyzed by specialty, women are overrepresented in specialties considered to be female patient dominated, such as psychiatry and care of the elderly, and underrepresented in specialties such as cardiology and nephrology. The overrepresentation of women in some specialties can reinforce gender stereotypes, potentially harming women. In addition, exclusion of males from these areas of research may be of disservice to men's health.

Background: Lack of racial and ethnic diversity in health research negatively impacts generalizability. We describe Mexican and Mexican American women's willingness to participate in health research in Oregon. Methods: We conducted a survey with Mexican-origin Latinas aged 18?49 years. Our primary outcome was willingness to participate in health research; we also asked sociodemographics and barriers and facilitators to participation. We used logistic regression to identify factors associated with willingness to participate. Results: Of 500 participants, 41% said that they would be willing to participate in health research, 14% said no, and 45% were unsure. In multivariable analyses, past participation in research and speaking English well were independently associated with willingness to participate. Barriers to participation included language, accessibility, and fear of medical procedures. Facilitators included improving future health care, language, and free medical care. Conclusions: Mexican-origin Latinas in Oregon are willing to participate in health research, but many are unsure. Providing study materials in Spanish is a concrete first step to improve recruitment and promote equity and inclusion.