ABSTRACT
For more than half a century, Denmark has maintained population-wide demographic, health care, and socioeconomic registers that provide detailed information on the interaction between all residents and the extensive national social services system. We leverage this resource to reconstruct the genealogy of the entire nation based on all individuals legally residing in Denmark since 1968. We cross-reference 6,691,426 individuals with nationwide health care registers to estimate heritability and genetic correlations of 10 broad diagnostic categories involving all major organs and systems. Heritability estimates for mental disorders were consistently the highest across demographic cohorts (average h2 = 0.406, 95% CI = [0.403, 0.408]), whereas estimates for cancers were the lowest (average h2 = 0.130, 95% CI = [0.125, 0.134]). The average genetic correlation of each of the 10 diagnostic categories with the other nine was highest for gastrointestinal conditions (average rg = 0.567, 95% CI = [0.566, 0.567]) and lowest for urogenital conditions (average rg = 0.386, 95% CI = [0.385, 0.388]). Mental, pulmonary, gastrointestinal, and neurological conditions had similar genetic correlation profiles.
Subject(s)
Genetic Diseases, Inborn/diagnosis , Genetic Diseases, Inborn/genetics , Genetic Predisposition to Disease/genetics , Denmark , Health Services Research/methods , Humans , Mental Disorders/diagnosis , Mental Disorders/geneticsABSTRACT
INTRODUCTION: Stakeholder engagement remains scarce in basic brain research. However, it can greatly improve the relevance of investigations and accelerate the translation of study findings to policy. The Lifebrain consortium investigated risk and protective factors influencing brain health using cognition, lifestyle and imaging data from European cohorts. Stakeholder activities of Lifebrain-organized in a separate work package-included organizing stakeholder events, investigating public perceptions of brain health and dissemination. Here, we describe the experiences of researchers and stakeholders regarding stakeholder engagement in the Lifebrain project. METHODS: Stakeholder engagement in Lifebrain was evaluated through surveys among researchers and stakeholders and stakeholders' feedback at stakeholder events through evaluation forms. Survey data were analysed using a simple content analysis approach, and results from evaluation forms were summarized after reviewing the frequency of responses. RESULTS: Consortium researchers and stakeholders experienced the engagement activities as meaningful and relevant. Researchers highlighted that it made the research and research processes more visible and contributed to new networks, optimized data collection on brain health perceptions and the production of papers and provided insights into stakeholder views. Stakeholders found research activities conducted in the stakeholder engagement work package to be within their field of interest and research results relevant to their work. Researchers identified barriers to stakeholder engagement, including lack of time, difficulties in identifying relevant stakeholders, and challenges in communicating complex scientific issues in lay language and maintaining relationships with stakeholders over time. Stakeholders identified barriers such as lack of budget, limited resources in their organization, time constraints and insufficient communication between researchers and stakeholders. CONCLUSION: Stakeholder engagement in basic brain research can greatly benefit researchers and stakeholders alike. Its success is conditional on dedicated human and financial resources, clear communication, transparent mutual expectations and clear roles and responsibilities. PUBLIC CONTRIBUTION: Patient organizations, research networks, policymakers and members of the general public were involved in engagement and research activities throughout the project duration.
Subject(s)
Health Services Research , Stakeholder Participation , Humans , Health Services Research/methods , Communication , Translational Research, Biomedical , BrainABSTRACT
Youth Participatory Action Research (YPAR) is an approach to research that engages youth across the research process. The peer researcher method is a technique used in YPAR where youth are trained in research and ethics to interview their peers. The purpose of this study was to: (i) describe the process of engaging youth as peer researchers in a Health Promoting Schools (HPS) and student engagement project and (ii) understand the peer researchers' perspectives of their experience throughout the project. Youth from across Nova Scotia, Canada in grades 7-10 (ages 12-16) were recruited as peer researchers in the Summer, 2022. The project included three stages: (i) peer researcher training, (ii) practicing, recruiting and conducting interviews and (iii) data interpretation workshop. To understand the peer researcher's experience, quantitative data were collected from an evaluation questionnaire. Outputs were produced using descriptive statistics. Qualitative data were collected through a focus group and interviews and analyzed using inductive content analysis. A total of 11 youth were recruited and completed peer researcher training. Most youth provided positive feedback on the training with a satisfaction score of 8.7/10. Qualitative analysis indicated benefits to the peer researchers including opportunities to build interview and social skills and learn about other's perspectives. This study provides a detailed overview of how to use a peer researcher method in a YPAR project to involve youth in research related to HPS and student engagement. The research also highlights the benefits of engaging youth in YPAR. Future research will report on the findings from the peer interviews.
Subject(s)
Health Services Research , Schools , Adolescent , Humans , Health Promotion/methods , Health Services Research/methods , Nova Scotia , Peer GroupABSTRACT
Qualitative story completion (QSC) is an innovative research method that offers researchers a range of unique opportunities for generating and analysing data. Participants are asked to write a 'story' in response to a hypothetical 'story stem', often in the third-person and involving fictional characters, rather than reporting on their direct experiences. QSC is being developed and increasingly taken up by researchers working across a range of fields; but it has been little used in health research, especially in the fields of nursing, health services research, medicine, and allied health. This means that health researchers have few examples to draw on when considering what QSC can offer them and how to rigorously design, conduct, and report a QSC study within health-related fields. We aim to address this gap and contribute to existing QSC literature by promoting increased use of QSC by health researchers and supporting them to produce rigorous QSC research. We outline three case examples illustrating how we have used QSC to conduct multidisciplinary health research relevant to nursing, medicine and nutrition. Drawing on these case examples, we reflect on challenges that we encountered, describe decision-making processes, and offer recommendations for conducting rigorous health research using QSC.
Subject(s)
Health Services Research , Humans , Health Services Research/methods , Qualitative ResearchABSTRACT
Utilizing a Black and Hip Hop feminist and Black girlhood studies theoretical lens, the purpose of this study is to explore how Black girls (14-17) and women (19-22), who are in a youth participatory action research (YPAR) mentoring program, BlackGirlsResearch (pseudonym) express their gendered racial identities and gendered racial experiences through their participation in a YPAR photovoice program. This study seeks to answer the following research question: (1) How do Black girls and college women conceptualize their gendered racial identities and gendered racial lived experiences in predominately white schools using a YPAR methodology and photovoice? Employing a qualitative thematic analysis to explore 36 photovoice narratives, results yielded 3 themes: (1) experiencing challenges at predominately white institutions (PWIs): false inclusivity, continued underrepresentation, and tokenism (2) identifying as "queens of culture": identity and empowerment through art, culture, and breaking conformity and (3) activism, inclusion, and accountability: solutions for PWIs. The results of this study indicate that Black girls and women can not only identify and critically discuss issues related to Black girls and women within PWIs, but through YPAR, they can push for positive youth development and community solutions related to those issues.
Subject(s)
Feminism , Health Services Research , Humans , Female , Adolescent , Health Services Research/methods , Universities , Schools , Social Behavior , Community-Based Participatory Research/methodsABSTRACT
Youth Participatory Action Research (YPAR) classrooms can work to shift the dialog and structure of schools to better fit the needs of students and disrupt dominant narratives that have marginalized students of Color. As scholars have shown, this work is not devoid of tensions. This paper examines the tensions that arose during the first 2 years of a high school PAR class. Written from the perspective of the 23 students in Soy Yo, the students use testimonios to narrate their collective experience as they analyze three tensions that could have ended Soy Yo and their YPAR project before it began. As a decolonial method, testimonios allow students to reclaim their stories by shedding light on their struggles, tensions, and transformative moments that adult collaborators might overlook. These testimonios illustrate the potential for YPAR classrooms to becoming a third space that allows for campus change and personal transformation. The paper concludes with lessons learned for future scholars and educators to explore.
Subject(s)
Community-Based Participatory Research , Health Services Research , Adolescent , Humans , Community-Based Participatory Research/methods , Health Services Research/methods , Schools , StudentsABSTRACT
The use of large data sources such as registries and claims-based data sets to perform health services research in anesthesia has increased considerably, ultimately informing clinical decisions, supporting evaluation of policy or intervention changes, and guiding further research. These observational data sources come with limitations that must be addressed to effectively examine all aspects of health care services and generate new individual- and population-level knowledge. Several statistical methods are growing in popularity to address these limitations, with the goal of mitigating confounding and other biases. In this article, we provide a brief overview of common statistical methods used in health services research when using observational data sources, guidance on their interpretation, and examples of how they have been applied to anesthesia-related health services research. Methods described involve regression, propensity scoring, instrumental variables, difference-in-differences, interrupted time series, and machine learning.
Subject(s)
Anesthesiology/methods , Anesthesiology/statistics & numerical data , Health Services Research/methods , Health Services Research/statistics & numerical data , Humans , Registries , Research DesignABSTRACT
BACKGROUND: Mixed methods research studies continue to pervade the field of health care, where pragmatism as a research paradigm and patient-oriented research (POR) as an engagement strategy are combined to strengthen the process and outcomes of the research. Pragmatists use the most appropriate research methods to address issues at hand, where complex social problems need multipronged approaches. As an emerging healthcare research strategy, POR actively engages individuals with lived experience across all stages of the research process. While POR continues to garner attention within mixed-methods research designs, there is a paucity of literature that considers POR in relation to pragmatism. OBJECTIVE: As POR grows in popularity within the field of health care, there is a need to explore the theoretical and epistemological alignment with pragmatism and the implications to research. METHODS: To address this need, we provide a critical review of the literature to examine the synergies between POR and pragmatism, and argue for the adoption of pragmatism as a paradigm for conducting POR. MAIN RESULTS: This article begins with a discussion of the philosophical underpinnings informing the pragmatic paradigm. It then identifies key alignments between POR and pragmatism across three intersecting concepts: democratic values, collaborative approaches to problem-solving and the pursuit of social justice. DISCUSSION AND CONCLUSIONS: Reflecting on our experiences engaging with patient partners in a mixed-methods POR study titled READY2Exit, we illustrate the relevance of pragmatism to POR by applying these concepts to practice. Implications and considerations for conducting POR within the pragmatic paradigm are also described. PATIENT OR PUBLIC CONTRIBUTION: This paper provides a critical review of the literature and did not directly involve patients or the public. The authors reflected on their experiences collaborating with five young adult patient partners in the READY2Exit study (case exemplar described in this article) to demonstrate the relevance of the pragmatic paradigm to POR. We acknowledge and thank the young adult patient partners for their contributions to the research, for encouraging us to think critically about patient engagement in research, and for sharing their experiences.
Subject(s)
Health Services Research , Patient Participation , Health Services Research/methods , HumansABSTRACT
INTRODUCTION: British Pakistani women have exceptionally high rates of obesity and yet are seldom heard in a research priority setting concerning weight management. The objectives of this study were (i) to ascertain what multisectoral professionals perceive to be the most pressing unmet obesity needs or topic areas that need more research in relation to Pakistani women living in deprived areas of Bradford and (ii) to determine the top 10 obesity health priorities for this group to develop an obesity research agenda. METHODS: A two-step process was adopted using the following: (i) a survey of a wide range of multisectoral professional stakeholders (n = 159) and (ii) a ranking exercise involving Pakistani women living in deprived areas of Bradford (n = 32) to select and prioritize their top 10 obesity health concerns and unmet needs from a list of 31 statements identified in the survey and previous research. Survey data were analysed using inductive content analysis and themes were identified. Themes were translated into statements to be ranked by Pakistani women. The ranking exercise was conducted by telephone either via voice or video call. Data were analysed using a reverse scoring system. RESULTS: Survey responses were grouped into statements reflecting the following three categories: education needs; healthy behaviour barriers and mental well-being. The highest rankings were given by Pakistani women to statements on mental health and the need for education. The top 10 prioritized statements were developed with members of the public into an obesity research agenda that reflected the target population. CONCLUSION: Actively engaging British Pakistani women in setting research priorities provided a unique opportunity to understand the key areas they think are important for future research. The culminating research agenda can be used by researchers to advance the field of obesity research in Pakistani communities, thus producing research outputs that are relevant to and have impact in this population. PATIENT OR PUBLIC CONTRIBUTION: Participants in the ranking exercise collected data. Public contributors were involved in developing the prioritized statements into a research agenda.
Subject(s)
Health Priorities , Health Services Needs and Demand , Health Services Research , Obesity , Poverty Areas , Social Determinants of Health , Biomedical Research/methods , Biomedical Research/organization & administration , Female , Health Care Surveys , Health Priorities/organization & administration , Health Services Research/methods , Health Services Research/organization & administration , Humans , Intersectoral Collaboration , Obesity/epidemiology , Obesity/therapy , Pakistan/ethnology , Social Determinants of Health/statistics & numerical data , Stakeholder Participation , United Kingdom/epidemiologyABSTRACT
OBJECTIVES: The aim of this study was to depict a comprehensive description of near miss research and clarify research gaps. BACKGROUND: Learning from near miss can provide early warnings and is critical for proactive and prospective risk management. Because of the lack of structured reviews, there is little knowledge about how near miss management has been managed in the past. METHODS: This review was conducted following the Arksey and O'Malley's methodology and reported by the PRISMA Extension for Scoping Reviews. RESULTS: Sixty-seven research articles were included. The results revealed that the most investigated fields include near miss reporting, near miss characteristics, and good catch project. Poor theoretical investigation, underreporting, and inconsistent outcome indicators are major problems. CONCLUSIONS: Solely understanding causes of near misses cannot guarantee effective learning; we also need to apply appropriate learning theories. Advanced technologies should be applied to solve long-standing underreporting issues. Accurate and consistent indicators should be applied in near miss research and management.
Subject(s)
Delivery of Health Care , Near Miss, Healthcare , Health Services Research/methods , HumansABSTRACT
Realist evaluation (RE) is a theory-driven evaluation approach inspired by scientific realism. It has become increasingly popular in the field of global health where it is often applied in low- and middle-income countries. This makes it timely to discuss RE's relationship to the emerging decolonisation of global health movement. In this short perspective, we argue that the principles and practices that underpin RE have great potential to contribute to the decolonisation endeavour. Both the focus on the inclusion of local stakeholders and the openness to the rival theories these stakeholders bring to the fore, are promising. However, in practice, we see that a lack of acknowledgement of power imbalances and different ontologies and an overreliance on Western-based theories thwart this potential. We therefore suggest that realist evaluations performed by external researchers, especially in the field of global health, should actively engage with issues of (power) inequities. This is not only the just thing to do, but will also contribute to a better understanding of the intervention and may facilitate the emancipation of the disenfranchised. One way of doing this is through the adoption of participatory (action) research methods, currently underused in realist evaluations. We finally give a short example of an evaluation that combines emancipatory and participatory practice development with a realist approach. The Afya-Tek project in Tanzania has an innovative bottom-up approach throughout the full evaluation cycle and shows the possible strength of the proposed combination to create better interventions, more empowered stakeholders, and more illuminating programme theories.
Subject(s)
Global Health , Health Services Research , Health Services Research/methods , Research Design , TanzaniaABSTRACT
The number of operations that surgeons have previously performed is associated with their patients' outcomes. However, this association may not be causal, because previous studies have often been cross-sectional and their analyses have not considered time-varying confounding or positivity violations. In this paper, using the example of surgeons who perform coronary artery bypass grafting, we describe (hypothetical) target trials for estimation of the causal effect of the surgeons' operative volumes on patient mortality. We then demonstrate how to emulate these target trials using data from US Medicare claims and provide effect estimates. Our target trial emulations suggest that interventions on physicians' volume of coronary artery bypass grafting operations have little effect on patient mortality. The target trial framework highlights key assumptions and draws attention to areas of bias in previous observational analyses that deviated from their implicit target trials. The principles of the presented methodology may be adapted to other scenarios of substantive interest in health services research.
Subject(s)
Coronary Artery Bypass/mortality , Epidemiologic Methods , Health Services Research/methods , Surgeons/statistics & numerical data , Adult , Aged , Datasets as Topic , Female , Humans , Male , Medicare/statistics & numerical data , Middle Aged , United States/epidemiologyABSTRACT
BACKGROUND: Despite the well-documented risks to patient safety associated with transitions from one care setting to another, health care organizations struggle to identify which interventions to implement. Multiple strategies are often needed, and studying the effectiveness of these complex interventions is challenging. OBJECTIVE: The objective of this study was to present lessons learned in implementing and evaluating complex transitional care interventions in routine clinical care. RESEARCH DESIGN: Nine transitional care study teams share important common lessons in designing complex interventions with stakeholder engagement, implementation, and evaluation under pragmatic conditions (ie, using only existing resources), and disseminating findings in outlets that reach policy makers and the people who could ultimately benefit from the research. RESULTS: Lessons learned serve as a guide for future studies in 3 areas: (1) Delineating the function (intended purpose) versus form (prespecified modes of delivery of the intervention); (2) Evaluating both the processes supporting implementation and the impact of adaptations; and (3) Engaging stakeholders in the design and delivery of the intervention and dissemination of study results. CONCLUSION: These lessons can help guide future pragmatic studies of care transitions.
Subject(s)
Health Services Research/methods , Patient Outcome Assessment , Patient Safety/standards , Quality Assurance, Health Care/methods , Transitional Care/standards , Academies and Institutes , Humans , Implementation ScienceABSTRACT
BACKGROUND: Stakeholder involvement in health care research has been shown to improve research development, processes, and dissemination. The literature is developing on stakeholder engagement methods and preliminarily validated tools for evaluating stakeholder level of engagement have been proposed for specific stakeholder groups and settings. OBJECTIVES: This paper describes the methodology for engaging a Study Advisory Committee (SAC) in research and reports on the use of a stakeholder engagement survey for measuring level of engagement. METHODS: Stakeholders with previous research connections were recruited to the SAC during the planning process for a multicenter randomized control clinical trial, which is ongoing at the time of this writing. All SAC meetings undergo qualitative analysis, while the Stakeholder Engagement Survey instrument developed by the Patient-Centered Outcomes Research Institute (PCORI) is distributed annually for quantitative evaluation. RESULTS: The trial's SAC is composed of 18 members from 3 stakeholder groups: patients and their caregivers; patient advocacy organizations; and health care payers. After an initial in-person meeting, the SAC meets quarterly by telephone and annually in-person. The SAC monitors research progress and provides feedback on all study processes. The stakeholder engagement survey reveals improved engagement over time as well as continued challenges. CONCLUSIONS: Stakeholder engagement in the research process has meaningfully contributed to the study design, patient recruitment, and preliminary analysis of findings.
Subject(s)
Health Services Research/methods , Palliative Care , Patient Outcome Assessment , Stakeholder Participation , Transitional Care , Humans , Pragmatic Clinical Trials as Topic , Research DesignABSTRACT
BACKGROUND: The COMprehensive Post-Acute Stroke Services study was a cluster-randomized pragmatic trial designed to evaluate a comprehensive care transitions model versus usual care. The data collected during this trial were complex and analysis methodology was required that could simultaneously account for the cluster-randomized design, missing patient-level covariates, outcome nonresponse, and substantial nonadherence to the intervention. OBJECTIVE: The objective of this study was to discuss an array of complementary statistical methods to evaluate treatment effectiveness that appropriately addressed the challenges presented by the complex data arising from this pragmatic trial. METHODS: We utilized multiple imputation combined with inverse probability weighting to account for missing covariate and outcome data in the estimation of intention-to-treat effects (ITT). The ITT estimand reflects the effectiveness of assignment to the COMprehensive Post-Acute Stroke Services intervention compared with usual care (ie, it does not take into account intervention adherence). Per-protocol analyses provide complementary information about the effect of treatment, and therefore are relevant for patients to inform their decision-making. We describe estimation of the complier average causal effect using an instrumental variables approach through 2-stage least squares estimation. For all preplanned analyses, we also discuss additional sensitivity analyses. DISCUSSION: Pragmatic trials are well suited to inform clinical practice. Care should be taken to proactively identify the appropriate balance between control and pragmatism in trial design. Valid estimation of ITT and per-protocol effects in the presence of complex data requires application of appropriate statistical methods and concerted efforts to ensure high-quality data are collected.
Subject(s)
Data Interpretation, Statistical , Health Services Research/methods , Patient Outcome Assessment , Stroke Rehabilitation/statistics & numerical data , Stroke/therapy , Cluster Analysis , Humans , Intention to Treat Analysis/methods , Pragmatic Clinical Trials as Topic , Randomized Controlled Trials as Topic , Treatment OutcomeABSTRACT
INTRODUCTION: Urolithiasis is a common diagnosis in urology. New technologies offer a variety of diagnostic and therapy and consequently display a financial burden on healthcare systems. Hence, clinical practice guidelines (CPG) are essential to implement evidence-based medicine and assure a standard of care considering limited resources. To date, there is no evidence of the use and adherence to CPG on urolithiasis. MATERIAL AND METHODS: Therefore, we performed a cross-sectional study to analyze the use of CPG on urolithiasis. Data collection was carried out by a questionnaire given to 400 German urologists. The survey included use and adherence to guidelines, evaluation of the clinical situation, therapy spectrum, and workplace. In total, 150 (37%) questionnaires were received and included in our survey. Statistics were performed by SPSS using Chi-quadrat test/Fisher's exact test. RESULTS: In our study, urologists were office based, hospital affiliated, non-academic, or academic centers in 53%, 32%, 16% and 5%, respectively. In 74% and 70%, urologists adhere to CPG in diagnostic and therapy. Interestingly, workplace and therapy spectrum determines the use of different CPG (p = 0.01; p = 0.022). Academic urologists were more likely to use international CPG of EAU (40%), while outpatient urologists significantly orientated on national CPG (46%). 86% of urologists with high volume of urolithiasis practice interventions in contrast to 53% in low volume (p = 0.001). More than 80% of urologists use short versions and app version of CPG. CONCLUSION: We firstly describe compliance and the use of CPG on urolithiasis. EAU and DGU present the most commonly used CPG. Short version and app version of CPG find frequent clinical utilization.
Subject(s)
Attitude of Health Personnel , Critical Pathways/standards , Guideline Adherence , Practice Guidelines as Topic , Practice Patterns, Physicians'/standards , Urolithiasis/therapy , Cross-Sectional Studies , Germany/epidemiology , Health Services Research/methods , Humans , Surveys and Questionnaires , Urolithiasis/epidemiology , Urologists/statistics & numerical data , WorkplaceABSTRACT
INTRODUCTION: Countries are working hard to improve access to healthcare through Universal Healthcare Coverage. To genuinely address the problems of healthcare access, we need to recognize all the dimensions and complexities of healthcare access. Levesque's Conceptual Framework of Access to Health introduced in 2013 provides an interesting and comprehensive perspective through the five dimensions of access and the five abilities of the population to access healthcare. The objectives of this paper are to identify and analyze all empirical studies that applied Levesque's conceptual framework for access to healthcare and to explore the experiences and challenges of researchers who used this framework in developing tools for assessing access. METHODS: A scoping review was conducted by searching through four databases, for studies citing Levesque et al. 2013 to select all empirical studies focusing on healthcare access that applied the framework. An initial 1838 documents underwent title screening, followed by abstract screening, and finally full text screening by two independent reviewers. Authors of studies identified from the scoping review were also interviewed. RESULTS: There were 31 studies identified on healthcare access using the Levesque framework either a priori, to develop assessment tool/s (11 studies), or a posteriori, to organize and analyze collected data (20 studies). From the tools used, 147 unique questions on healthcare access were collected, 91 of these explored dimensions of access while 56 were about abilities to access. Those that were designed from the patient's perspective were 73%, while 20% were for health providers, and 7% were addressed to both. Interviews from seven out of the 26 authors, showed that while there were some challenges such as instances of categorization difficulty and unequal representation of dimensions and abilities, the overall experience was positive. CONCLUSION: Levesque's framework has been successfully used in research that explored, assessed, and measured access in various healthcare services and settings. The framework allowed researchers to comprehensively assess the complex and dynamic process of access both in the health systems and the population contexts. There is still potential room for improvement of the framework, particularly the incorporation of time-related elements of access.
Subject(s)
Health Services Accessibility , Health Services Research , Health Services Accessibility/statistics & numerical data , Health Services Research/methods , HumansABSTRACT
BACKGROUND: Appropriate choice of research design is essential to rightly understand the research problem and derive optimal solutions. The Comorbidity Action in the North project sought to better meet the needs of local people affected by drug, alcohol and mental health comorbidity. The aim of the study focused on the needs of Aboriginal peoples and on developing a truly representative research process. A methodology evolved that best suited working with members of a marginalised Aboriginal community. This paper discusses the process of co-design of a Western methodology (participatory action research) in conjunction with the Indigenous methodologies Dadirri and Ganma. This co-design enabled an international PhD student to work respectfully with Aboriginal community members and Elders, health professionals and consumers, and non-Indigenous service providers in a drug and alcohol and mental health comorbidity project in Adelaide, South Australia. METHODS: The PhD student, Aboriginal Elder mentor, Aboriginal Working Party, and supervisors (the research team) sought to co-design a methodology and applied it to address the following challenges: the PhD student was an international student with no existing relationship with local Aboriginal community members; many Aboriginal people deeply distrust Western research due to past poor practices and a lack of implementation of findings into practice; Aboriginal people often remain unheard, unacknowledged and unrecognised in research projects; drug and alcohol and mental health comorbidity experiences are often distressing for Aboriginal community members and their families; attempts to access comorbidity care often result in limited or no access; and Aboriginal community members experience acts of racism and discrimination as health professionals and consumers of health and support services. The research team considered deeply how knowledge is shared, interpreted, owned and controlled, by whom and how, within research, co-morbidity care and community settings. The PhD student was supported to co-design a methodology that was equitable, democratic, liberating and life-enhancing, with real potential to develop feasible solutions. RESULTS: The resulting combined Participatory Action Research (PAR)-Dadirri-Ganma methodology sought to create a bridge across Western and Aboriginal knowledges, understanding and experiences. Foundation pillars of this bridge were mentoring of the PhD student by senior Elders, who explained and demonstrated the critical importance of Yarning (consulting) and Indigenous methodologies of Dadirri (deep listening) and Ganma (two-way knowledge sharing), and discussions among all involved about the principles of Western PAR. CONCLUSIONS: Concepts within this paper are shared from the perspective of the PhD student with the permission and support of local Elders and Working Group members. The intention is to share what was learned for the benefit of other students, research projects and community members who are beginning a similar journey.
Subject(s)
Health Services Research/methods , Health Services, Indigenous , Mental Health/ethnology , Native Hawaiian or Other Pacific Islander , Aged , Community-Based Participatory Research , Humans , Racism , South Australia , Substance-Related DisordersABSTRACT
BACKGROUND: Several middle and upper income countries carry out household surveys that seek to trace the profile of access and use of health services. Probably one of the most ambitious examples is Brazil, with its National Health Survey (PNS-2019). We evaluated PNS-2019, presenting in an unprecedented way, one of its innovations, which refer to Starfield and Shi's adult Primary Care Assessment Tool (PCAT). METHODS: Based on a cross-sectional study, we evaluated Module H of the PNS-2019, which interviewed a probabilistic sample of about 10,000 adults in 2019 in all 27 Brazilian states. According to the PCAT methodology, an average score equal to or above 6.6 indicates a greater orientation and quality of the evaluated primary care services. RESULTS: Brazilian overall PCAT score [5, 9] reveals the need to improve primary health care services across the country. There were no statistically significant differences in the scores by sex (men and women, 5.9), and race (whites 5.9 [5.7; 6.0] and brown / black 5.9 [5.8; 6.0]). On the other hand, there was a difference in terms of age. The elderly evaluated the services in a more positive way (score = 6.1 [6.0; 6.2]), when compared to those aged 40-59 years (5.9 [5.7; 6.0]) and 18 to 39 years (5.6 [5.5; 5.8]). First results of PNS-2019 show that the population that most needs primary care services in SUS is the one with the best perception and the most positive evaluation of the actions and procedures offered in health facilities. DISCUSSION: During 2019, Brazil undertook important structural reforms in PHC based on a new financing model with the aim of inducing an improvement in efficiency and strengthening its attributes. It is essential that countries with universal health coverage (UHC) guarantee access to their population and, especially, the most vulnerable, seek better efficiency of these services and regularly assess PHC based on the population's perception, through an independent methodology that monitor the quality of services and the strength of PHC, generating value for public resources applied to health services.
RESUMO: INTRODUçãO: Vários países de renda média e alta realizam pesquisas domiciliares que procuram traçar o perfil de acesso e uso dos serviços de saúde. Provavelmente um dos exemplos mais ambiciosos é o Brasil, com sua PNS. Avaliamos esse inquérito e apresentamos, de forma inédita uma de suas inovações, que se refere ao uso do instrumento Primary Care Assessment Tool (PCAT). MéTODOS: Com base em um estudo transversal, avaliamos o Módulo H da PNS-2019, que entrevistou uma amostra probabilística de cerca de 10.000 adultos em 2019 em todos os 27 estados brasileiros. De acordo com a metodologia do PCAT, um escore médio igual ou acima de 6,6 indica uma maior orientação e qualidade dos serviços de atenção primária avaliados. RESULTADOS: O escore médio geral do PCAT no Brasil foi de 5,9, revelando a necessidade de melhoria dos serviços de atenção primária à saúde em todo o país. Não houve diferenças estatisticamente significantes nos escores por sexo (homens e mulheres, 5,9) e raça (brancos 5,9 [5,7; 6,0] e pardos / pretos 5,9 [5,8; 6,0]). Por outro lado, houve diferença em termos de idade. Os idosos avaliaram os serviços de forma mais positiva (escore = 6,1 [6,0; 6,2]), quando comparados aos de 4059 anos (5,9 [5,7; 6,0]) e 18 a 39 anos (5,6 [5,5; 5,8]). Os primeiros resultados da PNS-2019 mostram que a população que mais necessita dos serviços de atenção básica no SUS é aquela que tem melhor percepção e avaliação mais positiva das ações e procedimentos oferecidos nas unidades de saúde. DISCUSSãO: Durante o ano de 2019, o Brasil fez reformas estruturais importantes na APS a partir de um novo modelo de financiamento, com o objetivo de induzir uma melhoria da eficiência e fortalecer seus atributos. É fundamental que países com sistemas de saúde de cobertura universal, garantam acesso a sua população e, em especial, aos mais vulneráveis; busquem melhor eficiência desses serviços e avaliem regularmente a APS a partir da percepção da população, por meio de uma metodologia independente que monitore a qualidade dos serviços e a força da APS, gerando valor aos recursos públicos aplicados nos serviços de saúde.
Subject(s)
Health Services Research , Primary Health Care , Adolescent , Adult , Aged , Brazil , Cross-Sectional Studies , Diffusion of Innovation , Family Characteristics , Female , Health Care Surveys , Health Services Research/methods , Humans , Male , Middle Aged , Primary Health Care/organization & administration , Sampling Studies , Young AdultABSTRACT
Delivering excellent health services requires accurate health information systems (HIS) data. Poor-quality data can lead to poor judgments and outcomes. Unlike probability surveys, which are representative of the population and carry accuracy estimates, HIS do not, but in many countries the HIS is the primary source of data used for administrative estimates. However, HIS are not structured to detect gaps in service coverage and leave communities exposed to unnecessary health risks. Here we propose a method to improve informatics by combining HIS and probability survey data to construct a hybrid estimator. This technique provides a more accurate estimator than either data source alone and facilitates informed decision-making. We use data from vitamin A and polio vaccination campaigns in children from Madagascar and Benin to demonstrate the effect. The hybrid estimator is a weighted average of two measurements and produces SEs and 95% confidence intervals (CIs) for the hybrid and HIS estimators. The estimates of coverage proportions using the combined data and the survey estimates differ by no more than 3%, while decreasing the SE by 1-6%; the administrative estimates from the HIS and combined data estimates are very different, with 3-25 times larger CI, questioning the value of administrative estimates. Estimators of unknown accuracy may lead to poorly formulated policies and wasted resources. The hybrid estimator technique can be applied to disease prevention services for which population coverages are measured. This methodology creates more accurate estimators, alongside measured HIS errors, to improve tracking the public's health.