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Project-based collaborations between a single academic group and a single pharmaceutical company arguably are the most frequent form of public-private partnership in preclinical research and development of new drugs. This chapter discusses the benefits of such collaborations for both sides and potential challenges that can arise before and during the conduct of a project. This is largely based on a survey of expectations and experience by 134 academic investigators with a history of engagement in a project-based collaboration with a pharmaceutical company as well as unstructured experience directly, and learned through discussions with colleagues, from the authors. Obviously, a key benefit for both sides is achieving goals that neither could easily achieve by itself. Scientific discovery, and publications, may be a shared benefit, while for academics, funding and access to compounds, and for industry, access to assay technology and reputational factors may be important. Major hurdles can be freedom to publish and assignment of intellectual property rights. On pragmatic grounds, reaching a contract can be cumbersome, which is largely attributable to the legal expectations and needs of both parties. However, overall satisfaction with project-based collaborations appears very high for academic investigators.
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INTRODUCTION: There is a growing role for patients, family members and caregivers as consultants, collaborators and partners in health system settings in Canada. However, compensation for this role is not systematized. When offered, it varies in both type (e.g., one-time honorarium, salary) and amount. Further, broad-based views of patient partners on compensation are still unknown. We aimed to describe the types and frequency of compensation patient partners have been offered and their attitudes towards compensation. METHODS: This study uses data from the Canadian Patient Partner Study (CPPS) survey. The survey gathered the experiences and perspectives of those who self-identified as patient partners working across the Canadian health system. Three questions were about compensation, asking what types of compensation participants had been offered, if they had ever refused compensation, and whether they felt adequately compensated. The latter two questions included open-text comments in addition to menu-based and scaled response options. Basic frequencies were performed for all questions and open-text comments were analyzed through inductive qualitative content analysis. RESULTS: A total of 603 individuals participated in the CPPS survey. Most respondents were never or rarely offered salary (81%), honorarium (64%), gift cards (80%) or material gifts (93%) while half were offered conference registration and expenses at least sometimes. A total of 129 (26%) of 499 respondents reported refusing compensation. Of 511 respondents, half felt adequately compensated always or often, and half only sometimes, rarely or never. Open-text comments revealed positive, ambivalent and negative attitudes towards compensation. Attitudes were framed by perceptions about their role, sentiments of giving back to the health system, feelings of acknowledgement, practical considerations, values of fairness and equity and accountability relationships. CONCLUSIONS: Our findings confirm that compensation is not standardized in Canada. Half of survey respondents routinely feel inadequately compensated. Patient partners have diverse views of what constitutes adequate compensation inclusive of personal considerations such as a preference for volunteering, and broader concerns such as promoting equity in patient partnership. Organizations should attempt to ensure that compensation practices are clear, transparent and attentive to patient partners' unique contexts. PATIENT CONTRIBUTION: Two patient partners are members of the CPPS research team and have been fully engaged in all study phases from project conception to knowledge translation. They are co-authors of this manuscript. The survey was co-designed and pilot tested with patient partners and survey participants were patient partners.
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Cuidadores , Humanos , Canadá , Femenino , Masculino , Encuestas y Cuestionarios , Persona de Mediana Edad , Adulto , Cuidadores/psicología , Salarios y Beneficios , Anciano , Compensación y ReparaciónRESUMEN
OBJECTIVES: Despite cervical cancer (CC) being a preventable disease, its incidence remains high in marginalized communities due to inequalities that restrict access to health services. This article investigates the experiences, perceptions, and attitudes regarding the screening of indigenous women in a region of the Colombian Amazon during a cervical cancer prevention initiative facilitated by community participation. DESIGN: Qualitative study based on interviews conducted with women and indigenous leaders from Paujil reserve. They participated in research focused on cervical cancer prevention, which employed a methodology of collaboration between academia and communities aimed at enhancing women's health and reducing inequalities in access to healthcare services. The analysis utilized a deductive and inductive approach. RESULTS: Five main themes were addressed: 'Barriers within health services'; 'Individual and cultural constraints'; 'Motivations and facilitators'; 'Positive experiences within the research framework'; and 'Suggestions for encouraging women's participation.' Challenges related to appointment scheduling and result delivery were frequently cited as obstacles to access. Misinformation, feelings of shame, fear, and distrust towards health services played significant roles in the reluctance to undergo screening. Factors such as support from family and community networks, respectful treatment, ease of scheduling appointments, the presence of female healthcare professionals, and involvement of leaders fluent in indigenous languages were identified as positive facilitators of screening acceptance. CONCLUSION: Understanding the factors that influence access to screening is crucial for reducing inequalities in service delivery for indigenous women. The involvement of trained leaders who can identify these factors and motivate women can have a positive impact on the acceptance and guidance of cervical cancer prevention programs.
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BACKGROUND: Typically, researchers and clinicians determine the agenda in sarcoma research. However, patient involvement can have a meaningful impact on research. Therefore, the Patient-Powered Research Network (PPRN) of the Sarcoma Patient Advocacy Global Network (SPAGN) set up a Priority Setting Partnership (PSP). The primary objective of this partnership is to identify priorities for research and patient advocacy topics. METHODS: In the first phase of this PSP, including 264 sarcoma patients and carers from all over the world, 23 research topics regarding sarcomas and 15 patient advocacy topics were identified using an online survey. In the second phase, participants were asked to fill in a top five and a top three of research and patient advocacy topics, respectively. Additionally, sociodemographic characteristics and sarcoma characteristics were collected. Social media channels, local national patient advocacy groups and the SPAGN website were used to distribute the survey. RESULTS: In total, 671 patients (75%) and carers (25%) participated in this survey. The five highest ranked research topics were related to causes of sarcoma (43%), prognosis and risk of recurrence (40%), specific subtypes of sarcoma (33%), the role of immunotherapy, targeted therapy and combined therapy (30%), and hereditary aspects (30%). The three highest ranked patient advocacy topics were improving the diagnostic process of sarcoma (39%), access to tumor DNA analysis (37%) and establishing an international sarcoma registry (37%). CONCLUSIONS: This sarcoma PSP has identified priorities for research and patient advocacy, offering guidance for researchers, assisting funding agencies with assessing project relevance and empowering patient advocates to represent the needs of patients and carers.
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Cuidadores , Defensa del Paciente , Sarcoma , Humanos , Sarcoma/terapia , Femenino , Masculino , Cuidadores/psicología , Persona de Mediana Edad , Adulto , Encuestas y Cuestionarios , Investigación Biomédica , Anciano , Participación del Paciente , Adulto JovenRESUMEN
Recently, academic circles have raised concerns about academic citation partnerships. Many researchers receive emails offering these partnerships, often landing in their spam folders. In this paper, I refer to academic citation partnerships as unethical collaborative arrangements where researchers or authors agree to cite each other's work in their academic publications to enhance their academic profiles, often measured by metrics like the h-index. I discuss the characteristics of such partnerships, individuals, and groups who are commonly involved in academic citation partnerships, and clarify what is not considered an academic citation partnership. I argue that these partnerships are predatory and pose a serious threat to scholarly integrity. Such solicitations blur ethical boundaries by treating citations as commodities, similar to predatory journals and conferences. These partnerships compromise the authenticity of scholarly discourse, artificially inflate perceived impacts, and distort academic evaluations. They undermine the pursuit of knowledge for its intrinsic value and exacerbate inequalities in academia by favoring those who can manipulate citation metrics through resources or networks. Addressing this issue requires a commitment to vigilance and adherence to ethical citation standards, ensuring academic discourse that is intellectually honest and genuinely beneficial to academia.
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BACKGROUND: There is growing evidence that the alcohol industry seeks to obstruct public health policies that might affect future alcohol sales. In parallel, the alcohol industry funds organisations that engage in "responsible drinking" campaigns. Evidence is growing that the content and delivery of such campaigns serves industry, rather than public health interests, yet these organizations continue to be the subject of partnerships with government health departments. This study aimed to examine the nature and potential impacts of such partnerships by analysing the practices of the alcohol industry-funded charity Drinkaware during the establishment of the Drink Free Days campaign. METHODS: A case study based on an inductive analysis of documents revealed by freedom of information (FoI) request regarding communications between Drinkaware, Public Health England (PHE), and the Portman Group, in the years running up to, and during, the Drink Free Days campaign, a partnership between alcohol industry-funded charity Drinkware, and PHE. RESULTS: This study reveals a range of less visible, system-level effects of such partnerships for government departments and civil society. The tensions observed, as exhibited by discrepancies between internal and external communications, the emphasis on managing and mitigating the perception of negative consequences, and the links to wider alcohol industry initiatives and bodies, suggest the need for wider considerations of organizational conflicts of interest, and of possible indirect, harmful consequences to policy-making. These include the marginalization of other civil society voices, the displacing of more effective policy options, and strategic alignment with other industry lobbying activities. CONCLUSION: The findings have implications for how public health practitioners and health organisations might better weigh the potential trade-offs of partnership in the context of health promotion campaigns.
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Consumo de Bebidas Alcohólicas , Promoción de la Salud , Salud Pública , Humanos , Inglaterra , Promoción de la Salud/organización & administración , Promoción de la Salud/métodos , Consumo de Bebidas Alcohólicas/prevención & control , Política de Salud , Bebidas Alcohólicas , Organizaciones de Beneficencia , Industria de Alimentos , Conducta CooperativaRESUMEN
BACKGROUND: A recent Lancet commission called for more research on palliative care in low- and middle-income (LMIC) countries such as Colombia. A research priority setting approach has been recommended by The Global Forum for Health Research to address the huge gap in research output between LMIC and high-income countries, with influential health service bodies recommending the active involvement of non-research expert stakeholders in establishing research priorities to address service user needs. METHOD: Priority setting partnership (PSP) following the four stages of the James Lind Alliance methodology; establishing the partnership, identifying evidence uncertainties, refining questions and uncertainties, and prioritization. Data from MS forms were analysed using descriptive statistics. RESULTS: A total of 33 stakeholders attended an online PSP workshop and completed the Mentimeter exercise in Microsoft Teams. A total of 48 attended the subsequent in person prioritisation exercise in urban Bogota (n = 22) and rural Popayan (n = 25). The stakeholders were a diverse group of health professionals (physicians, medical students, nurses, dentists, physiotherapists, nutritionist, occupational and speech therapists), financial and administrative staff and patients with life-limiting illness and caregivers. Top research priorities included patient and caregiver needs, service provider education and training, and better integration of palliative care with cancer and non-cancer services. The key challenges included a lack of interest in palliative care research, along with funding, time and resource constraints. Key solutions included collaboration across disciplines and settings, highlighting benefits of palliative research to help secure adequate resources, and multicentre, mixed method research, with patient involvement from the research development stage. CONCLUSION: The findings of this PSP should be disseminated among palliative care associations worldwide to inform international multicentre studies, and among governmental and nongovernmental organisations that promote research in Colombia. A focus on patient and family caregiver palliative care needs in Colombia should be prioritised.
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Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Cuidados Paliativos/tendencias , Colombia , Investigación/tendencias , Prioridades en Salud/tendenciasRESUMEN
Objective: Health literacy and its potential impacts on the wellbeing of patrons remain a highly regarded objective among health science and medical librarians when considering learning outcomes of patron communities. Librarians are positioned to champion literacy instruction activities. This study aimed to examine health information seeking attitudes and behaviors in an academic-based employee wellness program before and after health literacy workshops were developed and facilitated by an academic health sciences librarian. Methods: The intervention included instruction informed by Don Nutbeam's Health Literacy Framework and the Research Triangle Institute's Health Literacy Conceptual Framework. Sixty-five participants obtained through convenience sampling attended workshops and were invited to respond to pre- and post-session surveys. Using a quantitative quasi-experimental methodology, surveys collected health literacy indicators including preferred sources and handling practices of in-person and online health information. Results: Findings indicated workshops influenced information seeking behaviors as participants documented a decrease in social media use for health and wellness information (-36%) and medical information (-13%). An increase in the usage of consumer health databases (like Medline Plus) was also indicated post-workshop for health and wellness information (18%) and medical information (31%). Conclusion: Favorable impacts are evident in this small-scale study; however, more research is needed to confirm the influence of these methods on larger and more diverse populations. Librarians should continue to develop and disseminate theory-informed tools and methods aimed at engaging various communities in constructive health information seeking practices.
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Alfabetización en Salud , Promoción de la Salud , Conducta en la Búsqueda de Información , Bibliotecólogos , Humanos , Alfabetización en Salud/métodos , Femenino , Masculino , Promoción de la Salud/métodos , Adulto , Persona de Mediana Edad , Encuestas y Cuestionarios , Bibliotecas Médicas , Salud LaboralRESUMEN
BACKGROUND: The engagement of community partners in equitable partnerships with academic teams is necessary to achieve health equity. However, there is no standardized approach to support bidirectional engagement among research stakeholders in the context of partnership equity at each phase of the research process. OBJECTIVE: We describe the development of a systematic framework along with competencies and tools promoting bidirectional engagement and equity within community-academic partnerships at each phase of the research process. DESIGN: We conducted a four-step research process between November 2020 and December 2023 for framework development: (1) a narrative literature review; (2) expansion of existing bidirectional, equitable framework; (3) a scientific review with two groups of cognitive interviews (five community engagement researchers and five community leaders and members); and (4) three community-based organization leader focus groups. Thematic analysis was used to analyse focus group data. RESULTS: Using results of each step, the framework was iteratively developed, yielding four phases of the bidirectional engagement and equity (BEE) research framework: Relationship building and assessment of goals and resources (Phase I); form a community-academic partnership based on shared research interests (may include multilevel stakeholders) (Phase II); develop a research team comprising members from each partnering organization (Phase III); and implement the six-step equitable research process (Phase IV). Bidirectional learning and partnership principles are at the core of the partnership, particularly in Phases II-IV. Competencies and tools for conducting an equitable, engaged research process were provided. DISCUSSION: This conceptual framework offers a novel, stepwise approach and competencies for community-academic partners to successfully partner and conduct the research process equitably. CONCLUSION: The BEE research framework can be implemented to standardize the conduct of an equitable, engaged research process within a community-academic partnership, while improving knowledge and trust across partners and, ultimately, an increased return on investment and sustainability to benefit both partners in the area of health outcomes and ultimately health equity. PATIENT OR PUBLIC CONTRIBUTION: The development of this framework was co-led with a community organization in which two leaders in the organization were equitably involved in each phase of the research process, including grant development, study design, participant recruitment, protocol development for focus groups and community and researcher review, framework design and content and dissemination of this manuscript as a co-author. For grant development, the community leader completed the give-get grid components for them as a partner. They also wrote up their lived experience in the research process for the progress report. For the focus groups, one community leader co-led the focus group with the academic partner. For the narrative review, the community leaders did not actively conduct the narrative review but observed the process through the academic partners. One community leader wrote the section 'relationship building' and 'bidirectional learning' sections with the assistance of the academic partner, while they both equally provided input on other sections of the manuscript alongside academic partners. The community leaders have extensive experience in leading programmes, along with partnering with researchers to address health equity issues and improve health outcomes.
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Relaciones Comunidad-Institución , Grupos Focales , Equidad en Salud , Participación de los Interesados , Humanos , Investigación Participativa Basada en la Comunidad/organización & administración , Conducta Cooperativa , Participación de la Comunidad/métodosRESUMEN
BACKGROUND: A larger percentage of social housing tenants have poorer physical and mental health outcomes compared to private renters and homeowners. They are also at a greater risk of respiratory conditions, cardiovascular disease, communicable disease transmission and mortality. One approach that aims to reduce health inequalities is to create research partnerships with underserved local communities. Our primary aim was to develop a research partnership with social housing tenants in Nottingham and our secondary aim was to explore the health priorities of these social housing tenants to inform future research applications. We also hope to provide a descriptive process of PPI within a social housing context for other researchers to learn from. METHODS: We used Public and Patient Involvement (PPI) as the foundation of this work, as we believed that people with lived experience of social housing, also end-users of the research, were best placed to inform us of the areas with the greatest research need. Through online and in-person focus groups, we discussed with tenants, collectively named a Social Advisory Group (SAG), their health concerns and priorities. Together they raised 26 health issues, which were combined with 22 funding opportunity themes being offered by the NIHR (National Institute for Health and Care Research). This was with the purpose of investigating whether there was alignment between the health needs of Nottingham's social housing tenants and the NIHR's research priorities. A prioritisation technique (Diamond Nine) was used to sort in total, 48 areas of health and wellbeing, into three top priorities. Tenants were provided the opportunity to be involved in public health research in other ways too, such as reviewing this paper and also an NIHR Programme Development Grant application to expand and continue this work. One was also offered the opportunity to be a public co-applicant. RESULTS: The group prioritised improvements in the quality of social housing, mental health and healthcare services. There was only some alignment between these and the NIHR funding themes. Other factors, such as age and race, also determined individual health priorities. . The diversity and reach of the current project were limited, however this is something we hope to improve in the future with more funding. We learned that tenants have varying degrees of mobility and technological abilities, requiring both online and in-person meetings.
Social housing is offered to people who cannot afford to buy or rent in the open market, and a larger percentage of social housing tenants have poorer physical and mental health outcomes compared to the general population. One approach that aims to reduce health inequalities is to create sustainable research partnerships with underserved local communities. Our primary aim was to involve social housing tenants in public health research, as they are best placed to tell us the type of research they would benefit from. The secondary aim was to explore the health priorities of social housing tenants to inform future research applications. We also hope to describe the process of PPI within a social housing context for other researchers to learn from.To achieve these aims, we established a research partnership with a group of social housing tenants in Nottingham and spoke to them about the areas of their health they wanted to improve (i.e., their priorities). The topics that were discussed the most were the need for improved mental health, quality of social housing and healthcare services, however this varied between individuals according to race and age. We learned several things throughout this process. Firstly, the combination of mobility and technological abilities amongst tenants meant that meetings must be held both in-person and online. This ensured they remained accessible and convenient. Secondly, we learnt that in-person meetings should be held in a neutral space to encourage different members of the group to attend. Finally, in general, people were very enthusiastic about this partnership and were committed to seeing improvements in public health. We therefore provided more opportunities for the group to be involved in research. For example, they were offered the opportunity to write and edit a lay summary for a future research application, which was based on the priorities identified in this paper. One member of the group was nominated to be the public co-applicant , which would allow us to increase the reach of this housing work across the East Midlands. It would also allow us to increase the diversity of the group, as currently it is made up of mostly retired females of British origin. Involving the public in health research has been central to this process and continues to be important in the production of accessible and relevant research.
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Introduction: Global ophthalmology opportunities are becoming increasingly popular, and international partnerships are becoming more common among academic training institutions in the United States. There is need for training in the complex relational, motivational, ethical, and logistical issues that may arise in these partnerships. Methods: We developed a 3-hour case-based session featuring four characters in a fictitious international ophthalmology partnership scenario. Facilitators used structured questions for each of the four parts to foster interaction and discussion among learners. After the activity, participants completed an evaluation/questionnaire consisting of Likert-scale and open-ended questions. Results: A total of 23 ophthalmology residents and seven medical students underwent the activity over four iterations. The activity was well received, with 100% of learners either strongly agreeing (90%) or agreeing (10%) when asked if the session was worthwhile and 100% of learners either strongly agreeing (87%) or agreeing (13%) when asked if the format was conducive to achieving the learning objectives. Answers to questions on how learners would change how they practice ophthalmology in their residency and in their future careers revolved around the following topics: consideration of other perspectives, humility, self- and situational awareness, complexities of partnerships, reciprocity and exchange, importance of communication, and connection of principles between international and domestic medical practice. Discussion: While this case study explores an international ophthalmology partnership scenario, the principles and themes presented can be applicable to other fields of medicine, and can be applicable to the practice of medicine both internationally and domestically.
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Salud Global , Oftalmología , Humanos , Oftalmología/educación , Salud Global/educación , Encuestas y Cuestionarios , Internado y Residencia/métodos , Estudiantes de Medicina/psicología , Estudiantes de Medicina/estadística & datos numéricos , Estados Unidos , Cooperación InternacionalRESUMEN
Background/Objective: Few Spanish mindfulness interventions have been evaluated in Latinx patients with cancer. We culturally adapted a mindfulness intervention for Spanish speaking Latinx patients. The objective was to measure feasibility and acceptability as primary outcomes, with changes in anxiety, depression, and sleep as secondary outcomes. Method: Spanish-speaking Latinx patients with breast cancer (n = 31) were randomized, between April 2021 and May 2022 to either intervention or wait-list control groups. The mindfulness intervention consisted of 6-weekly 1.5-hour sessions remotely delivered by a novice facilitator. Cultural adaptations included language, metaphor, goal, concept, trauma informed, and acknowledgement of spirituality. Feasibility was benchmarked as 75% of participants attending their first session, 75% of participants completing 4 of 6 sessions, and scoring ≥ 4 on a 5-point Likert feasability scale measuring ability to implement changes after 6-weeks. Acceptability was measured as scoring ≥ 4 on a 5-point Likert scale measuring usefulness and relevance of the mindfulness intervention for each session. An intention-to-treat, linear mixed model with repeated measures analysis examined changes in anxiety, depression, and sleep at week 6 and 18 (3 months post intervention). Results: All three feasibility benchmarks were met with 75% of first session attendance, 96% of participants completing 4 of 6 sessions, and 94% scoring ≥ 4, on the feasibility scale (Mean (SD) = 4.3 (0.6)). Acceptability scores for both usefulness and relevance questions were ≥ 4 across all 6 sessions. Anxiety was significantly reduced at 3 months (-3.6 (CI -6.9, -0.2), P = .04), but is of unclear clinical significance given the small change. Depression scores declined, but not significantly, and there were no changes in sleep. Conclusion: This culturally adapted, remotely delivered mindfulness intervention using a novice facilitator was acceptable and feasible and demonstrated associated reductions in anxiety amongst Spanish speaking Latinx patients with breast cancer. Trial Registration: ClinicalTrials.gov ID# NCT04834154.
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BACKGROUND: In recent years, academics have increasingly acknowledged the importance of involving health service users and community stakeholders as active partners in health research. Yet, the involvement of older adults, the largest group of health service users, as research partners remains limited, possibly due to ageist attitudes that devalue older adults' contributions. During the three years of our Awakening Canadians to Ageism study, we convened an advisory group consisting of older adults and gerontological experts to discuss issues related to ageism, help interpret the study findings, and develop a range of knowledge mobilization strategies to dispel ageism. METHODS: To understand the experiences of members of the advisory group and solicit recommendations for improving future groups, we conducted a qualitative descriptive study and interviewed 8 older adults and 6 gerontological experts. Data were content analyzed. RESULTS: Four categories that were developed to explain participants' experiences and suggestions for future advisory groups included: organization and management, group experience, suggestions for future advisory groups and moving forward. A key finding was the value that the older adults and gerontological experts ascribed to conversations about the prevalence of ageism and their desire to continue these types of conversations in their personal groups and professional networks. Numerous helpful strategies for future advisory groups were identified, such as enhancing social diversity, both in terms of racial/ethnic/cultural representation and gender. Older adults wanted more "getting to know you time" in meetings and gerontological experts wanted more details about the research process and their role. CONCLUSIONS: This study's partnership approach can guide researchers seeking to involve key health service users and community stakeholders in health research and help enact positive social change.
In 2022 we developed an advisory group consisting of older adults and gerontological experts to review the findings of the first stage of our study Awakening Canadians to Ageism and provide guidance on knowledge mobilization and next steps. We interviewed 12 older adults and 6 gerontological experts from our advisory group to learn about their experiences with the group and provide suggestions for future groups. Participants provided feedback on group organization, management and processes, in addition to their experiences and strategies for future advisory groups. Both groups suggested enhancing the social diversity of the group, both in terms of racial/ethnic/cultural representation and gender. Older adults wanted more meeting time dedicated to getting to know the other groups members and gerontological experts wanted more details about the research process and their role.
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Empowerment and participation are promoted as critical factors in meaningful development processes; however, action-oriented researchers face challenges in fostering genuine empowerment and meaningful participation within traditional funding cycles and research timelines. This case study illustrates a participatory methodology employed by researchers in partnership with one Honduran non-governmental organization (NGO) to conduct 'practical' participatory evaluation with rural Honduran youth. Through collaborative autoethnography, two components of this methodology are identified and described. The first component - 'foundational elements'- includes the NGO's culture of transformative participation and the organization's attention to synergies in the insider/outsider identities of research partners. The second component includes the ability of the research team to leverage this foundation for the participatory evaluation with rural youth. Importantly, this ability was grounded in and shaped by long-term, trust-based relationships between research partners. These relationships were the catalyst for success in this participatory initiative, connecting the 'foundational elements' identified to the collaborative outcomes experienced. Overall, this case study contributes to current and ongoing scholarly discussions on how to facilitate meaningful participation and capability expansion in research and evaluation contexts.
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INTRODUCTION: Since 2009, nurses have relocated to Japan from Indonesia, the Philippines, and Vietnam under the auspices of the Economic Partnership Agreement (EPA). We asked why some migrant nurses remain in Japan whereas others leave. METHOD: We applied the methodology of Constructivist Grounded Theory. All participants were internationally educated nurses (IENs) currently or formerly working in Japan after passing the National Nursing Examination. RESULTS: Difficulty in mastering the Japanese language was established as one of the main themes. Initial coding elicited two explanatory sub-categories: lack of confidence in communication and effects of language difficulty on workplace relationships. One explains how practical experience in the workplace affected nurses' confidence in communication. The other explains how levels of Japanese language attainment shaped relationships with colleagues. DISCUSSION: These findings suggest a need to regulate the working conditions of foreign nurses, and a need for training schemes to optimize IEN retention.
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BACKGROUND: Metadata describe and provide context for other data, playing a pivotal role in enabling findability, accessibility, interoperability, and reusability (FAIR) data principles. By providing comprehensive and machine-readable descriptions of digital resources, metadata empower both machines and human users to seamlessly discover, access, integrate, and reuse data or content across diverse platforms and applications. However, the limited accessibility and machine-interpretability of existing metadata for population health data hinder effective data discovery and reuse. OBJECTIVE: To address these challenges, we propose a comprehensive framework using standardized formats, vocabularies, and protocols to render population health data machine-readable, significantly enhancing their FAIRness and enabling seamless discovery, access, and integration across diverse platforms and research applications. METHODS: The framework implements a 3-stage approach. The first stage is Data Documentation Initiative (DDI) integration, which involves leveraging the DDI Codebook metadata and documentation of detailed information for data and associated assets, while ensuring transparency and comprehensiveness. The second stage is Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM) standardization. In this stage, the data are harmonized and standardized into the OMOP CDM, facilitating unified analysis across heterogeneous data sets. The third stage involves the integration of Schema.org and JavaScript Object Notation for Linked Data (JSON-LD), in which machine-readable metadata are generated using Schema.org entities and embedded within the data using JSON-LD, boosting discoverability and comprehension for both machines and human users. We demonstrated the implementation of these 3 stages using the Integrated Disease Surveillance and Response (IDSR) data from Malawi and Kenya. RESULTS: The implementation of our framework significantly enhanced the FAIRness of population health data, resulting in improved discoverability through seamless integration with platforms such as Google Dataset Search. The adoption of standardized formats and protocols streamlined data accessibility and integration across various research environments, fostering collaboration and knowledge sharing. Additionally, the use of machine-interpretable metadata empowered researchers to efficiently reuse data for targeted analyses and insights, thereby maximizing the overall value of population health resources. The JSON-LD codes are accessible via a GitHub repository and the HTML code integrated with JSON-LD is available on the Implementation Network for Sharing Population Information from Research Entities website. CONCLUSIONS: The adoption of machine-readable metadata standards is essential for ensuring the FAIRness of population health data. By embracing these standards, organizations can enhance diverse resource visibility, accessibility, and utility, leading to a broader impact, particularly in low- and middle-income countries. Machine-readable metadata can accelerate research, improve health care decision-making, and ultimately promote better health outcomes for populations worldwide.
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INTRODUCTION: In 2014 the National Health Service (NHS) in England released the Five Year Forward plan1, envisioning a shift in power from health professionals to patients and the public. In response the Society and College of Radiographers (SCoR) produced the "Patient, Public and Practitioner Partnership within Imaging and Radiotherapy: Guiding Principles" (P4) document which was implemented within four domains of radiography practice; service delivery, service development, education and research2. This project explored how these guidelines were implemented; and whether improvement to the quality and scope were needed, leading to making recommendations for updating the document. METHODS: A mixed methods design was adopted with two phases. Phase 1 - a survey exploring use of the P4 document's guiding principles. There was no maximum number of participants to ensure inclusivity. Phase 2 - one focus group and four one-to-one interviews from the four domains3. RESULTS: 626 participants completed the phase 1 survey. 18.85% (n=118) of participants were aware of the document and used it as a reference tool for practice, teaching, and research. 81.15% (n=508) of participants stated they were unaware of the document. Themes from phase 2; importance of service user involvement in service delivery and evaluation, resources to ensure service user involvement, suggestions to update the P4 document and use of the P4 document in radiographer education. Participants acknowledged guidance in the document was best practice. They reported more awareness of patients' needs and the effect this has on radiographers in supporting their needs. CONCLUSION: Participants recommended the document be given greater visibility. The voices of patients and the public must be heard within radiography practice. IMPLICATIONS FOR PRACTICE: Feedback from this study can be used for the future development of the P4 document.
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Systems thinking has been recognized as valuable to public health policy, research and practice. Commentators and reviews have highlighted that there is still much to be done to embrace its potential. Here, we highlight that much of the discourse about systems thinking in, and for, public health supports the pursuit of a narrow path and is limited with respect to the lineages of Systems that are embraced. We invite readers to see the potential of systems thinking in pursuing a broader path which is motivated by a concern for alleviating health inequalities. This does not replace the narrow path but encompasses it. It prompts different considerations with respect to the nature of the transformation, partnership working and legitimacy. It also invites a different way of engaging with systems thinking and different ways of conceptualizing and managing change. The broad path both requires, and helps enhance, new ways of doing, relating, organizing, knowing and framing which are vital for the future of public health as a global concern.
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Salud Pública , Análisis de Sistemas , Humanos , Política de SaludRESUMEN
Background: Patient-monitoring software generates a large amount of data that can be reused for clinical audits and scientific research. The Observational Health Data Sciences and Informatics (OHDSI) consortium developed the Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM) to standardize electronic health record data and promote large-scale observational and longitudinal research. Objective: This study aimed to transform primary care data into the OMOP CDM format. Methods: We extracted primary care data from electronic health records at a multidisciplinary health center in Wattrelos, France. We performed structural mapping between the design of our local primary care database and the OMOP CDM tables and fields. Local French vocabularies concepts were mapped to OHDSI standard vocabularies. To validate the implementation of primary care data into the OMOP CDM format, we applied a set of queries. A practical application was achieved through the development of a dashboard. Results: Data from 18,395 patients were implemented into the OMOP CDM, corresponding to 592,226 consultations over a period of 20 years. A total of 18 OMOP CDM tables were implemented. A total of 17 local vocabularies were identified as being related to primary care and corresponded to patient characteristics (sex, location, year of birth, and race), units of measurement, biometric measures, laboratory test results, medical histories, and drug prescriptions. During semantic mapping, 10,221 primary care concepts were mapped to standard OHDSI concepts. Five queries were used to validate the OMOP CDM by comparing the results obtained after the completion of the transformations with the results obtained in the source software. Lastly, a prototype dashboard was developed to visualize the activity of the health center, the laboratory test results, and the drug prescription data. Conclusions: Primary care data from a French health care facility have been implemented into the OMOP CDM format. Data concerning demographics, units, measurements, and primary care consultation steps were already available in OHDSI vocabularies. Laboratory test results and drug prescription data were mapped to available vocabularies and structured in the final model. A dashboard application provided health care professionals with feedback on their practice.
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The surplus of used disability equipment contributing to waste in the UK and the lack of access to disability equipment in low- and middle-income countries (LMICs) are two issues in need of solution. To address such problems, UK charities refurbish and redistribute used disability equipment to LMICs. To date, there is a scarcity of data on how LMICs could access surplus disability equipment from UK organisations. This study aimed to collate and map out the process by which equipment is refurbished and redistributed from the UK to LMIC's and identify factors which influence the development and sustainability of the partnership. An explorative qualitative case study design was used. Nine semi-structured interviews were conducted with participants from sender (UK) and a receiver (Romania) organisation between January-February 2022, with real-time translation where necessary. Intelligent verbatim transcription was used, and data was analysed using latent thematic analysis. The process of collection, refurbishment and redistribution of disability equipment from the UK to a LMIC organisation was mapped. Three key themes were identified from the interviews: (1) Development out of need; (2) Service development requires an adequate working relationship; (3) Process consolidation and future. Strong, honest and transparent relationships between organisations was identified as underpinning the success of the initiative. Raising service provision standards to meet specific needs of LMIC organisations supports development of suitable equipment prescription. Development of similar partnerships has potential of reducing the inequity gap and waste. Global collaboration and planning are required to address challenges of access to disability equipment in LMICs.
Refurbishment and redistribution of surplus disability equipment has emerged and continues to be developed as a response to a critical need for equipment provision in low- and middle-income countries (LMICs), as well as to reduce surplus waste of equipment within the UK.The development of strong, honest, transparent and continued relationships between organisations was identified as underpinning the success of the initiative, in particular raising service provision standards to meet specific needs of LMIC organisations to develop suitable equipment prescription for service users.Development of similar partnerships has the potential of reducing the inequity gap and waste. Global collaboration and planning are required to address challenges of access to disability equipment in LMICs.