Producing an evidence‐based treatment information website in partnership with people affected by multiple sclerosis

Background and Aims: In earlier work, we identified that people affected by multiple sclerosis (MS) can have difficulty finding online treatment information that is up to date, trustworthy, understandable, and applicable to personal circumstances, but does not provoke confusion or negative emotional consequences. The objective was to develop online consumer summaries of MS treatment evidence (derived from Cochrane Reviews) that respond to identified treatment information needs of people affected by MS. Methods: A 2-phase mixed-methods project, conducted in partnership with consumers and an MS organisation. Phase 1 included review panels with consumers (Australians affected by MS) and health professionals to test paper-based treatment summaries before development, and pilot testing of the website. Phase 2 involved an online survey after website launch. Results: Eighty-three participants (85% affected by MS) took part. Phase 1 participants strongly endorsed key review summary components, including layering information, and additional sections to aid personal applicability. Participants additionally suggested questions for health professionals. Participants across both phases were receptive to the idea of being provided with Cochrane Review summaries online but were seeking other types of evidence and information, such as personal experiences and the latest experimental treatments, which could not be provided. While the small survey sample size (n = 58) limits application of the results to a broader population, the website was viewed favourably, as a useful, understandable, and trustworthy information source. Conclusion: We describe a partnership approach to developing online evidence-based treatment information, underpinned by an in-depth understanding of consumers' information needs

Traditional Owner Settlement Bill 2010

This research brief provides an overview of the background to the Traditional Owner Settlement Bill (2010), an outline of the main provisions of the Bill, stakeholder responses, and policy positions in other jurisdictions

“I’m trying to stop things before they happen” : Carers’ contributions to patient safety in hospitals

Patient safety policies increasingly encourage carer (i.e., family or friends) involvement in reducing health care–associated harm in hospital. Despite this, carer involvement in patient safety in practice is not well understood—especially from the carers’ perspective. The purpose of this article is to understand how carers of adult patients perceived and experienced their patient safety contributions in hospital. Constructivist grounded theory informed the data collection and analysis of in-depth interviews with 32 carers who had patient safety concerns in Australian hospitals. Results demonstrated carers engaged in the process of “patient-safety caring.” Patient-safety caring included three levels of intensity: low (“contributing without concern”), moderate (“being proactive about safety”), and high (“wrestling for control”). Carers who engaged at high intensity provided the patient with greater protection, but typically experienced negative consequences for themselves. Carers’ experiences of negative consequences from safety involvement need to be mitigated by practice approaches that value their contributions

Current Issues Brief: Independent Broad-based Anti-Corruption Commission Bill 2011

A discussion of issues relevant to the Independent Broad-based Anti-corruption Commission Bill 2011. The paper includes background information on the definition, effects and control of corruption, as well as the history of Victoria’s integrity system. The paper also includes an overview of the main provisions of the Bill, and an overview of the history and composition of anti-corruption commissions in other Australian jurisdictions

Institutional objection to abortion: A mixed-methods narrative review

Institutional objection (IO) occurs when institutions providing health care claim objector status and refuse to provide legally permissible health services such as abortion. IO may be regulated by sources including law, ethical codes and policies (including State and local/institutional policies). We conducted a mixed-methods narrative review of the empirical evidence exploring IO to abortion provision globally, to inform areas for further research. MEDLINE (Ovid), Embase (Ovid), CINAHL (EBSCO), Global Health (CAB Abstracts), ScienceDirect and Scopus were searched in August 2021 using keywords including ‘conscientious objection’, ‘faith-based organizations’, ‘religious hospitals’ and ‘abortion’. Eligible research focused on clinicians’ attitudes and experiences of IO to abortion. The 28 studies included in the review were from nine countries: United States (19), Chile (2), Turkey (1), Argentina (1), Australia (1), Colombia (1), Ghana (1), Poland (1) and South Africa (1). The analysis demonstrated that IO was claimed in a range of countries, despite different legislative and policy frameworks. There was strong evidence from the United States that clinicians in religious healthcare institutions were less likely to provide abortions and abortion referrals, and that training of future abortion providers was negatively affected by IO. Qualitative evidence from other countries showed that IO was claimed by secular as well as religious institutions, and individual conscientious objection could be used as a mechanism for imposing IO. Further research is needed to explore whether IO is morally justified, how decisions are made to claim IO, and on what grounds. Finally, appropriate models for regulating IO are needed to ensure the protection of women’s access to abortion. Suchmodels could be informed by those used to regulate IO in other contexts, such as voluntary assisted dying

FAQs for potential Cochrane Review authors

General information and requirements for applying for title registration with Cochrane Consumers and Communicatio

Equal Opportunity Bill 2010

A discussion of the Equal Opportunity Bill 2010, which repeals the Equal Opportunity Act 1995 and responds to the Gardner Report and the SARC Inquiry. This paper provides an overview of the main changes to the Equal Opportunity Bill 201

Effects of consumers and health providers working in partnership on health services planning, delivery and evaluation

BACKGROUND: Health services have traditionally been developed to focus on specific diseases or medical specialties. Involving consumers as partners in planning, delivering and evaluating health services may lead to services that are person‐centred and so better able to meet the needs of and provide care for individuals. Globally, governments recommend consumer involvement in healthcare decision‐making at the systems level, as a strategy for promoting person‐centred health services. However, the effects of this 'working in partnership' approach to healthcare decision‐making are unclear. Working in partnership is defined here as collaborative relationships between at least one consumer and health provider, meeting jointly and regularly in formal group formats, to equally contribute to and collaborate on health service‐related decision‐making in real time. In this review, the terms 'consumer' and 'health provider' refer to partnership participants, and 'health service user' and 'health service provider' refer to trial participants. This review of effects of partnership interventions was undertaken concurrently with a Cochrane Qualitative Evidence Synthesis (QES) entitled Consumers and health providers working in partnership for the promotion of person‐centred health services: a co‐produced qualitative evidence synthesis. OBJECTIVES: To assess the effects of consumers and health providers working in partnership, as an intervention to promote person‐centred health services. SEARCH METHODS: We searched the CENTRAL, MEDLINE, Embase, PsycINFO and CINAHL databases from 2000 to April 2019; PROQUEST Dissertations and Theses Global from 2016 to April 2019; and grey literature and online trial registries from 2000 until September 2019. SELECTION CRITERIA: We included randomised controlled trials (RCTs), quasi‐RCTs, and cluster‐RCTs of ‘working in partnership’ interventions meeting these three criteria: both consumer and provider participants meet; they meet jointly and regularly in formal group formats; and they make actual decisions that relate to the person‐centredness of health service(s). DATA COLLECTION AND ANALYSIS: Two review authors independently screened most titles and abstracts. One review author screened a subset of titles and abstracts (i.e. those identified through clinical trials registries searches, those classified by the Cochrane RCT Classifier as unlikely to be an RCT, and those identified through other sources). Two review authors independently screened all full texts of potentially eligible articles for inclusion. In case of disagreement, they consulted a third review author to reach consensus. One review author extracted data and assessed risk of bias for all included studies and a second review author independently cross‐checked all data and assessments. Any discrepancies were resolved by discussion, or by consulting a third review author to reach consensus. Meta‐analysis was not possible due to the small number of included trials and their heterogeneity; we synthesised results descriptively by comparison and outcome. We reported the following outcomes in GRADE ‘Summary of findings’ tables: health service alterations; the degree to which changed service reflects health service user priorities; health service users' ratings of health service performance; health service users' health service utilisation patterns; resources associated with the decision‐making process; resources associated with implementing decisions; and adverse events. MAIN RESULTS: We included five trials (one RCT and four cluster‐RCTs), with 16,257 health service users and more than 469 health service providers as trial participants. For two trials, the aims of the partnerships were to directly improve the person‐centredness of health services (via health service planning, and discharge co‐ordination). In the remaining trials, the aims were indirect (training first‐year medical doctors on patient safety) or broader in focus (which could include person‐centredness of health services that targeted the public/community, households or health service delivery to improve maternal and neonatal mortality). Three trials were conducted in high income‐countries, one was in a middle‐income country and one was in a low‐income country. Two studies evaluated working in partnership interventions, compared to usual practice without partnership (Comparison 1); and three studies evaluated working in partnership as part of a multi‐component intervention, compared to the same intervention without partnership (Comparison 2). No studies evaluated one form of working in partnership compared to another (Comparison 3). The effects of consumers and health providers working in partnership compared to usual practice without partnership are uncertain: only one of the two studies that assessed this comparison measured health service alteration outcomes, and data were not usable, as only intervention group data were reported. Additionally, none of the included studies evaluating this comparison measured the other primary or secondary outcomes we sought for the 'Summary of findings' table. We are also unsure about the effects of consumers and health providers working in partnership as part of a multi‐component intervention compared to the same intervention without partnership. Very low‐certainty evidence indicated there may be little or no difference on health service alterations or health service user health service performance ratings (two studies); or on health service user health service utilisation patterns and adverse events (one study each). No studies evaluating this comparison reported the degree to which health service alterations reflect health service user priorities, or resource use. Overall, our confidence in the findings about the effects of working in partnership interventions was very low due to indirectness, imprecision and publication bias, and serious concerns about risk of selection bias; performance bias, detection bias and reporting bias in most studies. AUTHORS' CONCLUSIONS: The effects of consumers and providers working in partnership as an intervention, or as part of a multi‐component intervention, are uncertain, due to a lack of high‐quality evidence and/or due to a lack of studies. Further well‐designed RCTs with a clear focus on assessing outcomes directly related to partnerships for patient‐centred health services are needed in this area, which may also benefit from mixed‐methods and qualitative research to build the evidence base