Improving Medication Safety in Cancer Services for Ethnic Minority Consumers: Protocol for a Pilot Feasibility and Acceptability Study of a Co-Designed Consumer Engagement Intervention.

BACKGROUND: People from ethnic minorities are often exposed to unsafe care contributing to poorer health care outcomes. Medication safety is a high-risk area requiring intervention to improve care outcomes. Using an adapted, experience-based co-design process with cancer service staff and patients from ethnic minorities, a medication communication tool was created: Making it Meaningful (MiM). OBJECTIVE: We aim to test whether the MiM tool is feasible and acceptable for use with ethnic minority consumers in cancer services in Australia. METHODS: A single site, controlled before and after this pilot study, will be used. Patients from Mandarin- and Russian-speaking backgrounds are eligible for inclusion. In total, 40 patients from these cultural backgrounds will be recruited and stratified by language to the intervention and control groups, with 20 participants in the intervention and 20 in the control group. Further, 4 health practitioners will be recruited and trained to use the MiM. Clinicians providing care for patients in the intervention will use the MiM during their usual appointment while providing medication communication using standard care processes for the control group. Telephone surveys will be conducted with participants at 3 time points, T1 before the intervention, T2 1 week post intervention, and T3 1 month post intervention, to assess knowledge and self-efficacy in medication management, perceived usability, and acceptability of the MiM. Qualitative interviews with clinicians who have used the MiM will be conducted 1 month postintervention to explore their perceptions of MiM feasibility and acceptability. RESULTS: Ethical approval for this research has been provided by the South Eastern Sydney Area Health Human Research Ethics Committee (HRECXXX). Bilingual field-workers, 1 Mandarin-speaking and 1 Russian-speaking, are contacting eligible patients to enroll. It is anticipated that recruitment will be completed by October 2023, with data collection completed by December 2023. CONCLUSIONS: Using experience-based co-design, we identified communication about medication, particularly between appointments, as a key issue impacting the safety of care for patients from ethnic minorities accessing cancer services. Increasing consumer engagement in medication management was identified as a strategy to reduce medication safety problems in cancer care; the MiM strategy was developed to address this issue. It is anticipated that by using the MiM, patient knowledge about prescribed medications and confidence in medication management will increase. Evidence from the pilot study will be used to inform a full-scale trial of the MiM tool with a range of ethnic minority communities accessing cancer services. A full-scale trial will seek to determine whether the MiM intervention is effective in knowledge and confidence about medication management, but also whether this improves patient outcomes in cancer care. TRIAL REGISTRATION: Australian New Zealand Clinical Trials ACTRN12622001260718p; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=384658&isReview=true. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/49902.

How do Australian mental health services use easy read to make information accessible for people with intellectual disability?

INTRODUCTION: Access to health information is a right for all people. Easy read information is one strategy used to make information accessible for people with intellectual disability. This research explored how easy read is used and the ways accessible information can address access barriers, with a focus on Australian mental health services. METHODS: Semi-structured interviews were conducted across four sites to explore how easy read was used. Participants (n = 49) were easy read users, health practitioners and staff from services providing mental health care in New South Wales, Australia. An integrated health literacy framework was used to analyse data. RESULTS: Most mental health staff did not use easy read or other accessible information, and did not consistently offer people with intellectual disability opportunities to understand, appraise and apply health information. This investigation confirmed the limited availability of accessible information resources, including easy read, and the importance of relationships of support when accessing health information. CONCLUSION: People with intellectual disability did not routinely have access to mental health information. Substantial change is required to address this disparity. IMPLICATIONS: Agency policy and processes require change to support staff practices that uphold the right to information. Inclusive practices that incorporate using easy read in health contexts, including mental health, are needed to facilitate change.

Characterising consumer engagement in virtual models of care: A systematic review and narrative synthesis.

BACKGROUND: Widespread adoption of digital tools and technologies now support the delivery of virtual healthcare. Although, consumer engagement is central to care processes in virtual care models, there is paucity of evidence regarding the nature and outcomes of consumer engagement. This study aimed to determine the nature of consumer engagement used in virtual models of care, and its impact on quality and safety of care. METHODS: A systematic review was undertaken with a narrative synthesis, with a search strategy applied to five electronic databases (CINAHL, EMBASE, MEDLINE, PsycINFO and Web of Science) RESULTS: Fifty-eight studies were included in the review that utilised a variety of virtual models of care across care services. Consumer engagement, such as patients' active involvement in monitoring, capturing and reporting their health data, was a common feature of the identified virtual models. CONCLUSION: Increasing use of virtual models of care requires consideration of the role of patients and their support persons in the use of technology and in wider care processes that occur at a distance from health professionals. Ensuring consumers are equipped with necessary support to effectively engage in virtual care is important to ensure equity in access to, and outcomes of, virtual care models.

Experience-based codesign approach to improve care in Australian emergency departments for complex consumer cohorts: the MyED project protocol, Stages 1.1-1.3.

INTRODUCTION: Emergency department (ED) care must adapt to meet current and future demands. In Australia, ED quality measures (eg, prolonged length of stay, re-presentations or patient experience) are worse for older adults with multiple comorbidities, people who have a disability, those who present with a mental health condition, Indigenous Australians, and those with a culturally and linguistically diverse (CALD) background. Strengthened ED performance relies on understanding the social and systemic barriers and preferences for care of these different cohorts, and identifying viable solutions that may result in sustained improvement by service providers. A collaborative 5-year project (MyED) aims to codesign, with ED users and providers, new or adapted models of care that improve ED performance, improve patient outcomes and improve patient experience for these five cohorts. METHODS AND ANALYSIS: Experience-based codesign using mixed methods, set in three hospitals in one health district in Australia. This protocol introduces the staged and incremental approach to the whole project, and details the first research elements: ethnographic observations at the ED care interface, interviews with providers and interviews with two patient cohorts-older adults and adults with a CALD background. We aim to sample a diverse range of participants, carefully tailoring recruitment and support. ETHICS AND DISSEMINATION: Ethics approval has been obtained from the Western Sydney Local Health District Human Research Ethics Committee (2022/PID02749-2022/ETH02447). Prior informed written consent will be obtained from all research participants. Findings from each stage of the project will be submitted for peer-reviewed publication. Project outputs will be disseminated for implementation more widely across New South Wales, Australia.

Assessing the environment for engagement in health services: The Audit for Consumer Engagement (ACE) tool.

INTRODUCTION: Although it is widely accepted that the physical environment can impact health quality and care outcomes, its impact on consumer engagement with health services has not been examined. Currently, no tools exist that assess the opportunities for consumer engagement offered within the physical environment. We aimed to develop and validate an environmental audit tool to assist health services and researchers to assess the extent to which the physical environment in health services creates and supports opportunities for consumer engagement. METHOD: An iterative, team-based approach in partnership with diverse stakeholders was used to develop the Audit for Consumer Engagement (ACE) tool. A four-stage process consisting of desktop review, concept clarification, identification of domains and validation was implemented. The tool was validated in one cancer service via face and content validation and inter-rater reliability was also assessed. RESULTS: The ACE tool was demonstrated to comprise four main domains (access and signage information; resources for consumers; resources to support diversity; and consumer engagement events or activities) measured with 17 items. Face and content validity was achieved, and preliminary reliability analysis indicated substantial agreement between the two researchers for all four domains with an average of 86% agreement. CONCLUSION: The ACE is a novel tool that is practical, relevant and reliable, and developed in partnership with consumers and health service providers. The tool can be used by health service providers, researchers and consumer agency groups to assess opportunities for consumer engagement offered within the physical environment of cancer services. The ACE tool has the potential to be used as a guide for enhancing consumer engagement opportunities and for research purposes. Further evidence about the validity of the tool is required, including criterion-related validity and utility in other health settings. PATIENT/PUBLIC CONTRIBUTION: This project is part of a wider 'CanEngage' project that includes a consumer investigator and is supported by a consumer advisory group. This study was completed in active partnership with members of a consumer advisory group from diverse backgrounds. Feedback was sought from the members throughout the development process of the tool with findings discussed with the CanEngage group members in scheduled meetings.

Using consumer engagement strategies to improve healthcare safety for young people: An exploration of the relevance and suitability of current approaches.

BACKGROUND: Consumer engagement in health care is recognized as a critical strategy to minimize healthcare-associated harms, however, little research has focussed on strategies to engage young people in healthcare safety. This study explores the suitability of commonly used engagement strategies, such as brochures, interactive bedside charts or apps, for young people (14-25 years) to improve their healthcare safety, with a focus on cancer care. METHODS: Four qualitative online workshops were conducted (N = 19). Two workshops included young people who had experienced cancer (n = 6) and two workshops included staff who support young people who had experienced a diagnosis of cancer (n = 12). Evidence from a systematic review was used to develop case studies of existing strategies as a topic guide for the online workshops. Data were analysed using a framework method and template analysis approach. RESULTS: Thematic analysis against the analytic framework led to the development of four principles for engagement with young people: empowerment, transparency, participatory culture and flexibility. The transition from being 'looked after' to young people being responsible for their own care was an integrative theme which intersected all elements of the framework. CONCLUSION: For service providers to engage with young people about safety issues in cancer services, the strategies employed need to be tailored to consider the transitional nature of being an adolescent or young adult. A systemic approach that incorporates flexible, tailored engagement strategies, education and empowerment of young people and healthcare providers is required to engage effectively with young people about safety in healthcare. These findings may have implications beyond cancer care. PATIENT OR PUBLIC CONTRIBUTION: Workshop content was developed with and by the CanEngage team, including the Consumer Advisory Group, who reviewed content and inform wider project priorities.

Enabling the space and conditions for co-leadership in co-design: an evaluation of co-facilitator training for culturally and linguistically diverse consumers.

Objectives and importance of study: We report the evaluative findings from the first stage of a project designed to co-produce strategies which improve the safety of culturally and linguistically diverse (CALD) patients in cancer care. Co-leadership is developed via training and supporting consumers, multilingual fieldworkers and researchers to co-facilitate co-design. Our aim was to evaluate the training undertaken with CALD co-facilitators to prepare for co-leadership of the co-design process within the CanEngage project. Study type and methods: A qualitative evaluation was conducted, consisting of semi-structured interviews with co-facilitators. Data were thematically analysed. Results: Analysis of interviews with 12 co-facilitators generated three themes: creating the conditions for co-leadership; developing the space for connections during training; and readiness for co-design. Conclusions: Providing opportunities for informal, social interactions during the training aided relationship-building among co-facilitators. The co-creation of terms of reference for the project encouraged a process of shared ownership and generated a path forward from the training to the upcoming co-design activities. We found that the recruitment process offered an initial forum to discuss the alignment of the motivations and expectations of those interested in becoming involved with the aims of the project and goals of the co-design.

Engaging with ethnic minority consumers to improve safety in cancer services: A national stakeholder analysis.

OBJECTIVE: Ethnic minority populations are often exposed to healthcare-associated harm. There is little evidence about whether current patient engagement interventions are relevant. We conducted a national analysis of existing approaches amongst stakeholders in cancer care. METHODS: Five online focus groups were conducted with 24 participants from consumer and health organisations across the Australian cancer system. Case studies depicting common methods of healthcare engagement to improve patient safety were developed and used to explore the suitability of current methods. Data were analysed thematically using the framework method. RESULTS: Three themes were identified: 1) sociocultural foundations of consumer engagement; 2) principles for adaptation; and 3) integration and implementation into cancer services. Sociocultural beliefs about cancer were considered to influence suitability. Adaptation may include multichannel methods, visual modalities and culturally specific content. Health system capacity, cultural competence of health service providers and consumer-led co-development were identified as critical to successful implementation. CONCLUSIONS: Existing engagement strategies are not completely suitable for ethnic minority populations nor feasible for implementation within cancer services. PRACTICE IMPLICATIONS: Healthcare services must work with ethnic minority populations to understand if and how underpinning beliefs influence engagement with cancer services. A range of tangible techniques may enhance the suitability of existing interventions.

What Are the Psycho-Social and Information Needs of Adolescents and Young Adults Cancer Care Consumers with Intellectual Disability? A Systematic Review of Evidence with Recommendations for Future Research and Practice.

People with intellectual disability have unmet health needs and experience health inequalities. There is limited literature regarding cancer care for children, adolescents, and young adults (AYA) with intellectual disability despite rising cancer incidence rates in this population. This systematic review aimed to identify the psycho-social and information support needs of AYA cancer care consumers with intellectual disability to generate recommendations for future research and cancer care service delivery enhancement. We searched eight databases yielding 798 articles. Following abstract and full-text review, we identified 12 articles meeting our inclusion criteria. Our three themes related to communication and accessible information; supports and system navigation, cancer service provider training, and reasonable adjustments. There was a lack of user-friendly, accessible information about cancer and screening programs available. Both paid and family carers are critical in accessing cancer supports, services, and screening programs for AYA with intellectual disability. Ongoing training should be provided to healthcare professionals regarding the importance of care screening for AYAs with intellectual disability. This review recommends that AYA with intellectual disability and their family carers be involved in developing tailored cancer services. This should focus on enabling inclusive screening programs, accessible consent, and challenging the enduring paternalism of support services via training and appropriate communication tools.

Do patient engagement interventions work for all patients? A systematic review and realist synthesis of interventions to enhance patient safety.

BACKGROUND: Patients are increasingly being asked for feedback about their healthcare and treatment, including safety, despite little evidence to support this trend. This review identifies the strategies used to engage patients in safety during direct care, explores who is engaged and determines the mechanisms that impact effectiveness. METHODS: A systematic review was performed of seven databases (CINAHL, Cochrane, Cochrane-Central, Embase, ISI Web of Science, Medline, PsycINFO) that included research published between 2010 and 2020 focused on patient engagement interventions to increase safety during direct care and reported using PRISMA. All research designs were eligible; two reviewers applied criteria independently to determine eligibility and quality. A narrative review and realist synthesis were conducted. RESULTS: Twenty-six papers reporting on twenty-seven patient engagement strategies were included and classified as consultation (9), involvement (7) and partnership (11). The definitions of 'patient engagement' varied, and we found limited details about participant characteristics or interactions between people utilizing strategies. Collaborative strategy development, a user-friendly design, proactive messaging and agency sponsorship were identified as mechanisms to improve engagement about safety at the point of direct care. CONCLUSIONS: Agency sponsorship of collaboration between staff and patients is essential in the development and implementation of strategies to keep patients safe during direct care. Insufficient details about participant characteristics and patient-provider interactions limit recommendations for practice change. More needs to be learned about how patients are engaged in discussions about safety, particularly minority groups unable to engage with standard information. PATIENT OR PUBLIC CONTRIBUTION: Review progress was reported to the CanEngage team, including the consumer steering group, to inform project priorities (PROSPERO CRD42020196453).