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Building better research partnerships by understanding how Aboriginal health communities perceive and use data: a semistructured interview study.

ABSTRACT: To describe the attitudes and beliefs of health professionals working in Aboriginal Community Controlled Health Services (ACCHS) towards the access, usage and potential value of routinely obtained clinical and research data.Face-to-face, semistructured interviews were conducted with 35 health professionals from 2 urban and 1 regional ACCHS in New South Wales. The interviews were transcribed and themes were identified using an adapted grounded theory approach.Six major themes were identified: occupational engagement (day-to-day relevance, contingent on professional capacity, emphasising clinical relevance), trust and assurance (protecting ownership, confidence in narratives, valuing local sources), motivation and empowerment (engaging the community, influencing morale, reassuring and encouraging clients), building research capacity (using cultural knowledge, promoting research aptitude, prioritising specific data), optimising service provision (necessity for sustainable services, guiding and improving services, supporting best practice), and enhancing usability (ensuring ease of comprehension, improving efficiency of data management, valuing accuracy and accessibility).Participants were willing to learn data handling procedures that could further enhance health service delivery and enable more ACCHS-led research, but busy workloads restrict these opportunities. Staff held concerns regarding the translation of research data into beneficial services, and believed that the outcome and purpose of data collection could be communicated more clearly. Promoting research partnerships, ensuring greater awareness of positive health data and the purposes of data collection, and communicating data in a user-friendly format are likely to encourage greater data use, build research capacity and improve health services within the Aboriginal community.

SUBMITTER: Young C

PROVIDER: S-EPMC4853984 | biostudies-other | 2016 Apr

REPOSITORIES: biostudies-other

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Project description:BackgroundAustralian federal and jurisdictional governments are implementing ambitious policy initiatives intended to improve health care access and outcomes for Aboriginal and Torres Strait Islander people. In this qualitative study we explored Aboriginal Medical Service (AMS) staff views on factors needed to improve chronic care systems and assessed their relevance to the new policy environment.MethodsTwo theories informed the study: (1) 'candidacy', which explores "the ways in which people's eligibility for care is jointly negotiated between individuals and health services"; and (2) kanyini or 'holding', a Central Australian philosophy which describes the principle and obligations of nurturing and protecting others. A structured health systems assessment, locally adapted from Chronic Care Model domains, was administered via group interviews with 37 health staff in six AMSs and one government Indigenous-led health service. Data were thematically analysed.ResultsStaff emphasised AMS health care was different to private general practices. Consistent with kanyini, community governance and leadership, community representation among staff, and commitment to community development were important organisational features to retain and nurture both staff and patients. This was undermined, however, by constant fear of government funding for AMSs being withheld. Staff resourcing, information systems and high-level leadership were perceived to be key drivers of health care quality. On-site specialist services, managed by AMS staff, were considered an enabling strategy to increase specialist access. Candidacy theory suggests the above factors influence whether a service is 'tractable' and 'navigable' to its users. Staff also described entrenched patient discrimination in hospitals and the need to expend considerable effort to reinstate care. This suggests that Aboriginal and Torres Strait Islander people are still constructed as 'non-ideal users' and are denied from being 'held' by hospital staff.ConclusionsSome new policy initiatives (workforce capacity strengthening, improving chronic care delivery systems and increasing specialist access) have potential to address barriers highlighted in this study. Few of these initiatives, however, capitalise on the unique mechanisms by which AMSs 'hold' their users and enhance their candidacy to health care. Kanyini and candidacy are promising and complementary theories for conceptualising health care access and provide a potential framework for improving systems of care.

Project description:IntroductionThe effectiveness of community-based participatory research (CBPR) partnerships to address health inequities is well documented. CBPR integrates knowledge and perspectives of diverse communities throughout the research process, following principles that emphasize trust, power sharing, co-learning, and mutual benefits. However, institutions and funders seldom provide the time and resources needed for the critical stage of equitable partnership formation and development.MethodsSince 2011, the Detroit Urban Research Center, collaborating with other entities, has promoted the development of new community-academic research partnerships through two grant programs that combine seed funding with capacity building support from community and academic instructors/mentors experienced in CBPR. Process and outcomes were evaluated using mixed methods.ResultsFrom 2011 to 2021, 50 partnerships received grants ranging from $2,500 to $30,000, totaling $605,000. Outcomes included equitable partnership infrastructure and processes, innovative pilot research, translation of findings to interventions and policy change, dissemination to multiple audiences, new proposals and projects, and sustained community-academic research partnerships. All partnerships continued beyond the program; over half secured additional funding.ConclusionsKeys to success included participation as community-academic teams, dedicated time for partnership/relationship development, workshops to develop equity-based skills, relationships, and projects, expert community-academic instructor guidance, and connection to additional resources. Findings demonstrate that small amounts of seed funding for newly forming community-academic partnerships, paired with capacity building support, can provide essential time and resources needed to develop diverse, inclusive, equity-focused CBPR partnerships. Building such support into funding initiatives and through academic institutions can enhance impact and sustainability of translational research toward advancing health equity.

Project description:BackgroundThere is limited evidence on labour exploitation's impact on migrant health. This population is, however, often employed in manual low-skilled jobs known for poor labour conditions and exploitation risks. The lack of a common conceptualisation of labour exploitation in health research impedes the development of research measuring its effects on migrant health and, ultimately, our understanding of migrants' health needs.AimTo develop an operational conceptual framework of labour exploitation focusing on migrant workers in manual low-skilled jobs.MethodsNon-probabilistic sampling was used to recruit multidisciplinary experts on labour exploitation. An online Group Concept Mapping (GCM) was conducted. Experts: 1) generated statements describing the concept 'labour exploitation' focusing on migrants working in manual low-skilled jobs; 2) sorted generated statements into groups reflecting common themes; and 3) rated them according to their importance in characterising a situation as migrant labour exploitation. Multidimensional Scaling and Cluster Analysis were used to produce an operational framework detailing the concept content (dimensions, statements, and corresponding averaged rating).FindingsThirty-two experts sorted and rated 96 statements according to their relative importance (1 "relatively unimportant" to 5 "extremely important"). The operational framework consists of four key dimensions of migrant labour exploitation, distributed along a continuum of severity revealed by the rating: 'Shelter and personal security' (rating: 4.47); 'Finance and migration' (4.15); 'Health and safety' (3.96); and 'Social and legal protection' (3.71).ConclusionThis study is the first to both generate an empirical operational framework of migrant labour exploitation, and demonstrate the existence of a "continuum from decent work to forced labour". The framework content can be operationalised to measure labour exploitation. It paves the way to better understand how different levels of exploitation affect migrant workers' health for global policymakers, health researchers, and professionals working in the field of migrant exploitation.

Project description:BackgroundNeurological disorders are a common cause of morbidity and mortality in sub-Saharan African, but resources for their management are scarce. Collaborations between training institutions in developed and resource-limited countries can be a successful model for supporting specialty medical education and increasing clinical and research capacity.Case reportThis report describes a US National Institutes of Health (NIH) funded Medical Education Partnership Initiative (MEPI) to enhance expertise in neurology, developed between Makerere University College of Health Sciences in Kampala, Uganda, and Case Western Reserve University School of Medicine in Cleveland, OH, USA. This collaborative model is based on a successful medical education and research model that has been developed over the past two decades. The Ugandan and US teams have accumulated knowledge and 'lessons learned' that facilitate specialty expertise in neurological conditions, which are widespread and associated with substantial disability in resource-limited countries. Strengths of the model include a focus on community health care settings and a strong research component. Key elements include strong local leadership; use of remote technology, templates to standardize performance; shared exchanges; mechanisms to optimize sustainability and of dissemination activities that expand impact of the original initiative. Efficient collaborations are further enhanced by external and institutional support, and can be sequentially refined.ConclusionModels such as the Makerere University College of Health Sciences - Case Western Reserve University partnership may help other groups initiate collaborative education programmes and establish successful partnerships that may provide the opportunity to expand to other chronic diseases. A benefit of collaboration is that learning is two-directional, and interaction with other international medical education collaborators is likely to be of benefit to the larger global health community.

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Building better research partnerships by understanding how Aboriginal health communities perceive and use data: a semistructured interview study.

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