The Validating Outcomes by Including Consumer Experience (VOICE) project is developing patient reported experience measure (PREM) tools to collect consumer feedback for Indigenous primary healthcare (IPHC) services’ accreditation and quality improvement processes. This study aimed to explore the views of health service staff about: (1) optimising the feasibility of collection, analysis and interpretation of findings; and (2) resourcing requirements for implementation of the PREM.
A participatory action research qualitative study design, guided by an Indigenous advisory group. Our team of Indigenous and non-Indigenous researchers conducted semistructured focus groups and individual interviews with IPHC staff. Focus groups and interviews were recorded, transcribed and thematically analysed. Multiple sense-making meetings were conducted with the Indigenous advisory group.
Eight partner IPHC services across four Australian states and territories.
All staff were eligible and invited to participate in the study via purposive and snowball sampling. Administrative staff (eg, receptionist, programme facilitator), clinicians/practitioners (eg, general practitioner, nurse, Aboriginal and Torres Strait Islander health workers and practitioners) and service managers (eg, CEO, practice manager) from partner health services participated.
63 staff participated; 44 attended across 13 focus groups, with the remainder participating in individual interviews. The majority of participants were between 35 years and 55 years old (52%), female (66%) and working in frontline IPHC service delivery roles (56%). Equal numbers identified as Indigenous (50%) and non-Indigenous (50%). Many had worked in the Indigenous health and well-being sector for over 10 years (40%). ‘Culturally safe care’ and ‘accountability’ were identified as primary themes and key reasons for gathering consumer feedback. Subthemes identified were ‘Relationships’, ‘trust and respect’, ‘communication about consumer feedback’, ‘timing and frequency of requesting consumer feedback’, ‘health service systems’, ‘health service and staff capacity’, ‘staff skills’ and ‘structure and administration of the PREM’. All themes and subthemes need to be considered for the successful design and implementation of PREMs in IPHC settings.
Many of the issues identified are not currently considered in the process of collecting PREM data for accreditation yet, if addressed, would likely improve the quality and relevance of data collected. The findings from this study will inform the co-design and validation of Indigenous-specific PREM tools to collect consumer feedback. Critically, service and community input will ensure the PREM tools meet service needs for continuous quality improvement and accreditation and reflect the priorities and values of Indigenous peoples.
Despite extensive efforts in HIV prevention, significant barriers to accessing interventions such as HIV pre-exposure prophylaxis (PrEP) persist in Canada. Although PrEP has demonstrated efficacy in preventing HIV transmission, various structural, social and systemic factors continue to impede its widespread adoption and use. These factors influence the uptake (acceptance and access) and use (adherence and retention) of PrEP. The purpose of this scoping review is to examine the existing body of evidence regarding the barriers and facilitators to uptake and use of PrEP in Canada. By identifying these factors, the review aims to inform future research, policy development and interventions to improve PrEP access and its integration into HIV prevention strategies in Canada.
This scoping review will focus on studies involving HIV-seronegative individuals in Canada who are either eligible for or currently using PrEP as an HIV prevention option. The review will consider barriers and facilitators within services, programmes, policies or practices related to HIV prevention in Canada. Eligible studies will include experimental, quasi-experimental, observational or qualitative designs. Studies that do not address PrEP or HIV prevention, or that involve populations not aligned with the inclusion criteria, will be excluded. The review will involve searching a range of key databases, including MEDLINE, Embase, PsycINFO, Cochrane Library, CINAHL, Scopus, Web of Science and TRIP, with no language restrictions, and focusing on publications from 2016 onward. Two independent reviewers will screen titles and abstracts, followed by full-text assessment and data extraction, using Covidence. Data will be analysed narratively, with a specific focus on subgroup analyses of key populations. The findings will be synthesised to provide an overview of the key themes, trends, and evidence gaps identified within the existing literature.
This piece of research will not involve human participants and will solely use already published data. Consequently, ethics approval is not necessary. The findings will be disseminated through peer-reviewed journal articles and conference presentations and may be of relevance to governmental health agencies and local HIV/AIDS service organisations.
The protocol has been registered on Open Science Framework registries at https://doi.org/10.17605/OSF.IO/69WJA.
Type 1 diabetes is a chronic autoimmune disease that often presents with diabetic ketoacidosis at diagnosis. Since detection of type 1 diabetes risk is possible using genetic risk scores and autoantibody assays, prevention of diabetic ketoacidosis or delayed onset of type 1 diabetes may be possible and may improve outcomes. Several pilot screening programmes for type 1 diabetes risk have emerged worldwide but outcomes measured in these screening programmes are heterogeneous, making it difficult to compare and synthesise findings across studies. To improve the standardisation of outcome reporting and measurement, we aim to develop a patient-oriented core outcome set for studies of type 1 diabetes risk screening.
This five-step protocol was developed in alignment with the COS-STAndardised Protocol Statement and the Core Outcome Measures in Effectiveness Trials framework. The five steps will include: (1a) conducting a rapid literature review, (1b) gathering input on candidate outcomes from members of the public, (2) combining literature and public input to prepare a preliminary list of outcomes, (3) conducting Delphi surveys with a range of stakeholders to begin to establish consensus on outcomes, (4) holding a final consensus meeting to establish consensus on outcomes and (5) establishing the outcome measurement instruments for the core outcome set.
Ethics approval has been provided by The Hospital for Sick Children Research Ethics Board. The core outcome set will be distributed to researchers and clinicians involved in diabetes screening and clinical care, patient and family networks, research funders, journal editors, public health experts, and policymakers. Disseminated materials will be tailored to the various end users in the form of publication through academic journals, policy briefs, conferences, educational webinars, websites and social media.