VOICE–Validating Outcomes by Including Consumer Experience: A Study Protocol to Develop a Patient Reported Experience Measure for Aboriginal and Torres Strait Islander Peoples Accessing Primary Health Care

Aboriginal and Torres Strait Islander peoples’ (hereafter respectfully referred to as Indigenous Australians) experiences of health care are shaped by historical, social and cultural factors, with cultural security critical to effective care provision and engagement between services and community. Positive patient experiences are associated with better health outcomes. Consequently, it is an accreditation requirement that primary health care (PHC) services must formally gather and respond to patient feedback. However, currently available patient feedback tools were not developed with Indigenous Australians, and do not reflect their values and world views. Existing tools do not capture important experiences of care of Indigenous Australians in PHC settings, nor return information that assists services to improve care. Consistent with the principles of Indigenous Data Sovereignty, we will co-design and validate an Indigenous-specific Patient Reported Experience Measure (PREM) that produces data by and for community, suitable for use in quality improvement in comprehensive PHC services. This paper presents the protocol of the study, outlining the rationale, methodologies and associated activities that are being applied in developing the PREM. Briefly, guided by an Aboriginal and Torres Strait Islander Advisory Group, our team of Indigenous and non-Indigenous researchers, service providers and policy makers will use a combination of Indigenous methodologies, participatory, and traditional western techniques for scale development. We will engage PHC service staff and communities in eight selected sites across remote, regional, and metropolitan communities in Australia for iterative cycles of data collection and feedback throughout the research process. Yarning Circles with community members will identify core concepts to develop an “Experience of Care Framework”, which will be used to develop items for the PREM. Staff members will be interviewed regarding desirable characteristics and feasibility considerations for the PREM. The PREM will undergo cognitive and psychometric testing

VOICE–Validating Outcomes by Including Consumer Experience: A Study Protocol to Develop a Patient Reported Experience Measure for Aboriginal and Torres Strait Islander Peoples Accessing Primary Health Care

Aboriginal and Torres Strait Islander peoples’ (hereafter respectfully referred to as Indigenous Australians) experiences of health care are shaped by historical, social and cultural factors, with cultural security critical to effective care provision and engagement between services and community. Positive patient experiences are associated with better health outcomes. Consequently, it is an accreditation requirement that primary health care (PHC) services must formally gather and respond to patient feedback. However, currently available patient feedback tools were not developed with Indigenous Australians, and do not reflect their values and world views. Existing tools do not capture important experiences of care of Indigenous Australians in PHC settings, nor return information that assists services to improve care. Consistent with the principles of Indigenous Data Sovereignty, we will co-design and validate an Indigenous-specific Patient Reported Experience Measure (PREM) that produces data by and for community, suitable for use in quality improvement in comprehensive PHC services. This paper presents the protocol of the study, outlining the rationale, methodologies and associated activities that are being applied in developing the PREM. Briefly, guided by an Aboriginal and Torres Strait Islander Advisory Group, our team of Indigenous and non-Indigenous researchers, service providers and policy makers will use a combination of Indigenous methodologies, participatory, and traditional western techniques for scale development. We will engage PHC service staff and communities in eight selected sites across remote, regional, and metropolitan communities in Australia for iterative cycles of data collection and feedback throughout the research process. Yarning Circles with community members will identify core concepts to develop an “Experience of Care Framework”, which will be used to develop items for the PREM. Staff members will be interviewed regarding desirable characteristics and feasibility considerations for the PREM. The PREM will undergo cognitive and psychometric testing

VOICE–Validating Outcomes by Including Consumer Experience: A Study Protocol to Develop a Patient Reported Experience Measure for Aboriginal and Torres Strait Islander Peoples Accessing Primary Health Care

Aboriginal and Torres Strait Islander peoples’ (hereafter respectfully referred to as Indigenous Australians) experiences of health care are shaped by historical, social and cultural factors, with cultural security critical to effective care provision and engagement between services and community. Positive patient experiences are associated with better health outcomes. Consequently, it is an accreditation requirement that primary health care (PHC) services must formally gather and respond to patient feedback. However, currently available patient feedback tools were not developed with Indigenous Australians, and do not reflect their values and world views. Existing tools do not capture important experiences of care of Indigenous Australians in PHC settings, nor return information that assists services to improve care. Consistent with the principles of Indigenous Data Sovereignty, we will co-design and validate an Indigenous-specific Patient Reported Experience Measure (PREM) that produces data by and for community, suitable for use in quality improvement in comprehensive PHC services. This paper presents the protocol of the study, outlining the rationale, methodologies and associated activities that are being applied in developing the PREM. Briefly, guided by an Aboriginal and Torres Strait Islander Advisory Group, our team of Indigenous and non-Indigenous researchers, service providers and policy makers will use a combination of Indigenous methodologies, participatory, and traditional western techniques for scale development. We will engage PHC service staff and communities in eight selected sites across remote, regional, and metropolitan communities in Australia for iterative cycles of data collection and feedback throughout the research process. Yarning Circles with community members will identify core concepts to develop an “Experience of Care Framework”, which will be used to develop items for the PREM. Staff members will be interviewed regarding desirable characteristics and feasibility considerations for the PREM. The PREM will undergo cognitive and psychometric testing

Haplotypes composed of minor frequency single nucleotide polymorphisms of the TNF gene protect from progression into sepsis: A study using the new sepsis classification

Objectives: Several articles have provided conflicting results regarding the role of single nucleotide polymorphisms (SNPs) in the promoter region of the TNF gene in susceptibility to sepsis. Former articles have been based on previous definitions of sepsis. This study investigated the influence of TNF haplotypes on the development of sepsis using the new Sepsis-3 definitions. Methods: DNA was isolated from patients suffering from infection and systemic inflammatory response syndrome. Haplotyping was performed for six SNPs of TNF. The serum levels of tumour necrosis factor alpha (TNF-α) of these patients were measured using an enzyme immunosorbent assay. Patients were classified into infection and sepsis categories using the Sepsis-3 definitions. Associations between the TNF haplotypes and the clinical characteristics and serum TNF-α levels of the patients were examined. Results: The most common TNF haplotype h1 was composed of major alleles of the studied SNPs. Carriage of haplotypes composed of minor frequency alleles was associated with a lower risk of developing sepsis (odds ratio 0.41, 95% confidence interval 0.19–0.88, p = 0.022), but this did not affect the 28-day outcome. Serum TNF-α levels were significantly higher among patients homozygous for h1 haplotypes who developed sepsis compared to infection (p = 0.032); a similar result was not observed for patients carrying other haplotypes. Conclusions: Haplotypes containing minor frequency SNP alleles of TNF protect against the development of sepsis without affecting the outcome