Engaging consumers in health research: A narrative review

Objective: Consumer and community engagement (CCE) in research is increasingly valued in a contemporary healthcare environment that seeks to genuinely partner with consumers and the wider community. Although there is widespread agreement at research governance levels as to the benefits of CCE in research, there is little available research-based guidance as to how best to proceed with CCE organisationally and how to manage and overcome barriers. The aim of this narrative review was to draw together the available research, review findings and relevant governance-related material and to discuss these in light of a case series among research-engaged consumers in order to chart a practical way forward. Methods: A narrative literature review about CCE in research was conducted. Following this, a case series among seven consumers who had been engaged as partners in health research was conducted. Finally, the lived experience of these consumers was explored against the findings of the narrative review. Results: In all, 121 papers were identified and reviewed, 37 of which were used to inform the content of this paper. The most important benefits of CCE to both consumers and healthcare researchers were related to improvements in trust between consumer and researchers, and the increased relevance and ethics of research agendas ultimately pursued. Barriers to CCE were found to be pragmatic, attitudinal and organisational. Enabling factors that capitalise on the benefits and help address the barriers to meaningful CCE are outlined and discussed in light of a case series conducted among research-engaged consumers in Australia and internationally. Conclusion: Best practice standards, organisational commitments and resources are needed to improve the status quo in Australia and to provide health research end-users with research outcomes that better align with their priorities and needs. What is known about the topic?: Consumer and community engagement (CCE) in research is increasing in prevalence and is likely to be beneficial to both consumers and healthcare providers and researchers. What does this paper add?: Following review of the available research findings and governance statements about CCE, enabling strategies are presented in light of a case series among Sydney-based research-engaged consumers. What are the implications for practitioners?: Barriers to consumer and community engagement can be overcome if well understood and tackled organisationally. The potential benefits of shifting to a fully consumer- or community-engaged healthcare research environment are multifactorial and represent a paradigm shift in favour of evidence-based patient and family-centred care

Policies on the collection, analysis, and reporting of sex and gender in Australian health and medical research: a mixed methods study

Objective: To explore the policies of key organisations in Australian health and medical research on defining, collecting, analysing, and reporting data on sex and gender, and to identify barriers to and facilitators of developing and implementing such policies. Study design: Mixed methods study: online planning forum; survey of organisations in Australian health and medical research, and internet search for policies defining, collecting, analysing, and reporting data by sex and gender in health and medical research. Setting, participants: Australia, 19 May 2021 (planning forum) to 12 December 2022 (final internet search). Main outcome measures: Relevant webpages and documents classified as dedicated organisation-specific sex and gender policies; policies, guidelines, or statements with broader aims, but including content that met the definition of a sex and gender policy; and references to external policies. Results: The online planning forum identified 65 relevant organisations in Australian health and medical research; twenty participated in the policy survey. Seven organisations reported at least one relevant policy, and six had plans to develop or implement such policies during the following two years. Barriers to and facilitators of policy development and implementation were identified in the areas of leadership, language and definitions, and knowledge skills and training. The internet search found that 57 of the 65 organisations had some form of sex and gender policy, including all ten peer-reviewed journals and five of ten research funders; twelve organisations, including eight peak body organisations, had published dedicated sex and gender policies on their websites. Conclusion: Most of the organisations included in our study had policies regarding the integration of sex and gender in health and medical research. The implementation and evaluation of these policies is necessary to ensure that consideration of sex and gender is adequate during all stages of the research process

Screening and social prescribing in healthcare and social services to address housing issues among children and families: a systematic review

Objectives Housing is a social determinant of health that impacts the health and well-being of children and families. Screening and referral to address social determinants of health in clinical and social service settings has been proposed to support families with housing problems. This study aims to identify housing screening questions asked of families in healthcare and social services, determine validated screening tools and extract information about recommendations for action after screening for housing issues. Methods The electronic databases MEDLINE, PsycINFO, EMBASE, Ovid Emcare, Scopus and CINAHL were searched from 2009 to 2021. Inclusion criteria were peer-reviewed literature that included questions about housing being asked of children or young people aged 0-18 years and their families accessing any healthcare or social service. We extracted data on the housing questions asked, source of housing questions, validity and descriptions of actions to address housing issues. Results Forty-nine peer-reviewed papers met the inclusion criteria. The housing questions in social screening tools vary widely. There are no standard housing-related questions that clinical and social service providers ask families. Fourteen screening tools were validated. An action was embedded as part of social screening activities in 27 of 42 studies. Actions for identified housing problems included provision of a community-based or clinic-based resource guide, and social prescribing included referral to a social worker, care coordinator or care navigation service, community health worker, social service agency, referral to a housing and child welfare demonstration project or provided intensive case management and wraparound services. Conclusion This review provides a catalogue of housing questions that can be asked of families in the clinical and/or social service setting, and potential subsequent actions

Consensus statement on abusive head trauma in infants and young children

Abusive head trauma (AHT) is the leading cause of fatal head injuries in children younger than 2 years. A multidisciplinary team bases this diagnosis on history, physical examination, imaging and laboratory findings. Because the etiology of the injury is multifactorial (shaking, shaking and impact, impact, etc.) the current best and inclusive term is AHT. There is no controversy concerning the medical validity of the existence of AHT, with multiple components including subdural hematoma, intracranial and spinal changes, complex retinal hemorrhages, and rib and other fractures that are inconsistent with the provided mechanism of trauma. The workup must exclude medical diseases that can mimic AHT. However, the courtroom has become a forum for speculative theories that cannot be reconciled with generally accepted medical literature. There is no reliable medical evidence that the following processes are causative in the constellation of injuries of AHT: cerebral sinovenous thrombosis, hypoxic-ischemic injury, lumbar puncture or dysphagic choking/vomiting. There is no substantiation, at a time remote from birth, that an asymptomatic birth-related subdural hemorrhage can result in rebleeding and sudden collapse. Further, a diagnosis of AHT is a medical conclusion, not a legal determination of the intent of the perpetrator or a diagnosis of murder. We hope that this consensus document reduces confusion by recommending to judges and jurors the tools necessary to distinguish genuine evidence-based opinions of the relevant medical community from legal arguments or etiological speculations that are unwarranted by the clinical findings, medical evidence and evidence-based literature

A two-center retrospective review of the hematologic evaluation and laboratory abnormalities in suspected victims of non-accidental injury

Investigation for bleeding disorders in the context of suspected non-accidental injury (NAI) is inconsistent. We reviewed the hematologic evaluation of children who presented with symptoms of bleeding and/or bruising suspicious for NAI to determine the frequency of hematologic tests, abnormal hematologic laboratory results, and hematologic diagnoses. A retrospective cohort study design was employed at two freestanding academic children’s hospitals. ICD-9 codes for NAI were used to identify 427 evaluable patients. Medical records were queried for the details of clinical and laboratory evaluations at the initial presentation concerning for NAI. The median age for the population was 326 days (range 1 day–14 years), 58% were male. Primary bleeding symptoms included intracranial hemorrhage (31.8%) and bruising (68.2%). Hematologic laboratory tests performed included complete blood cell count in 62.3%, prothrombin time (PT) in 55.0%, and activated partial thromboplastin time (aPTT) in 53.6%; fibrinogen in 27.6%; factor activity in 17.1%; von Willebrand disease evaluation in 14.5%; and platelet function analyzer in 11.7%. Prolonged laboratory values were seen in 22.5% of PT and 17.4% of aPTT assays; 66.0% of abnormal PTs and 87.5% of abnormal aPTTs were repeated. In our cohort, 0.7% (3 of 427) of the population was diagnosed with a condition predisposing to bleeding. In children with bleeding symptoms concerning for NAI, hemostatic evaluation is inconsistent. Abnormal tests are not routinely repeated, and investigation for the most common bleeding disorder, von Willebrand disease, is rare. Further research into the extent and appropriate timing of the evaluation is warranted

Evaluating for Suspected Child Abuse: Conditions That Predispose to Bleeding

Child abuse might be suspected when children present with cutaneous bruising, intracranial hemorrhage, or other manifestations of bleeding. In these cases, it is necessary to consider medical conditions that predispose to easy bleeding/bruising. When evaluating for the possibility of bleeding disorders and other conditions that predispose to hemorrhage, the pediatrician must consider the child’s presenting history, medical history, and physical examination findings before initiating a laboratory investigation. Many medical conditions can predispose to easy bleeding. Before ordering laboratory tests for a disease, it is useful to understand the biochemical basis and clinical presentation of the disorder, condition prevalence, and test characteristics. This technical report reviews the major medical conditions that predispose to bruising/bleeding and should be considered when evaluating for abusive injury.</jats:p