Epistemic appropriation and the ethics of engaging with trans community knowledge in the context of mental healthcare research.

Mental healthcare research increasingly focuses the needs of trans people and, in doing so, acknowledges knowledge and epistemic resources developed in trans communities. In this article, we aim to raise awareness of an ethical issue described by Emmalon Davis that may arise in the context of engaging with community knowledge and epistemic resources: the risk of epistemic appropriation. It is composed of two harms (1) a detachment of epistemic resources developed in the originating community and (2) a misdirection of these epistemic resources for epistemic goals of a dominant community. In this article, we map and discuss the ethical concerns in using knowledge originating in trans communities in terms of epistemic appropriation in the context of mental healthcare research. We first argue that misgendering, failing to reference non-academic sources and a lack of attribution in community authorship are forms of epistemic detachment. Second, we problematize cases of epistemic misdirection of trans epistemic resources, focusing on the examples of detransition and transition regret. We discuss harms related to epistemic appropriation in relationship to risks to safety. The article aims to raise awareness about the risk of epistemic appropriation both in researchers engaging with trans knowledge as well as in mental healthcare workers who seek information on trans.

Fidelity, pragmatism and the "grey line" in between-exploring the delivery of a pragmatic physical activity randomised controlled trial-a secondary analysis.

BACKGROUND: Intervention fidelity in health services research has been poor with a reported lack of understanding about what constitutes pragmatic adaptation of interventions and what constitutes failure to maintain intervention fidelity. However, the challenges facing those delivering such interventions have not been thoroughly explored. The aims of this study were to critically explore the challenges in maintaining fidelity experienced by physiotherapy staff and support workers when delivering a complex intervention for older people living with frailty. METHODS: This study is a secondary analysis of data from a process evaluation of a large randomised controlled trial (RCT). The process evaluation employed qualitative methodologies with mixed methods including a variety of data collection methods, including participant observation, semi-structured interviews and documentary analysis. Thematic analysis was used to make sense of the data. RESULTS: Many therapy staff felt ongoing confusion about what was acceptable to adapt and what needed to follow the protocol exactly. We found that some therapy staff were able to embrace the challenges of pragmatically adapting interventions while maintaining intervention fidelity, others stuck rigidly to the protocol and failed to adapt interventions where it was necessary. CONCLUSION: It was clear that the understanding of fidelity and pragmatism was poor. While pragmatic trials are vital to replicate real world clinical practice, further guidance may need to be developed in order to guide the level of adaptation that is acceptable before fidelity is undermined.

Conceptualizing National Advisory Boards in primary care research: application to the Two in One HIV and COVID screening and testing model.

The authors report on their development of a National Advisory Board (NAB) to guide a funded project: Two in One: HIV + COVID-19 Screening and Testing Model. This project aimed to improve primary care practitioners' capacity to routinize HIV, PrEP/PEP, and COVID-19 vaccine screenings for all their patients while relying on culturally responsive communication with their minoritized patients. To approach their monumental research and education tasks, they created a NAB, drawing from the literature on advisory boards to (a) promote board member engagement and (b) progress successfully through the six stages suggested for successful advisory boards. A midpoint survey and final focus groups with NAB members indicated mixed levels of engagement, a sense of time and work being valued, and pride in the media and academic reach of the project. The authors offer considerations for others considering forming a NAB to guide primary care research and interventions.

Quality improvement initiative: implementing and redefining video review of real-time neonatal procedures using action research.

Video review (VR) of procedures in the medical environment can be used to drive quality improvement. However, first it has to be implemented in a safe and effective way. Our primary objective was to (re)define a guideline for implementing interprofessional VR in a neonatal intensive care unit (NICU). Our secondary objective was to determine the rate of acceptance by providers attending VR. For 9 months, VR sessions were evaluated with a study group, consisting of different stakeholders. A questionnaire was embedded at the end of each session to obtain feedback from providers on the session and on the safe learning environment. In consensus meetings, success factors and preconditions were identified and divided into different factors that influenced the rate of adoption of VR. The number of providers who recorded procedures and attended VR sessions was determined. A total of 18 VR sessions could be organised, with an equal distribution of medical and nursing staff. After the 9-month period, 101/125 (81%) of all providers working on the NICU attended at least 1 session and 80/125 (64%) of all providers recorded their performance of a procedure at least 1 time. In total, 179/297 (61%) providers completed the questionnaire. Almost all providers (99%) reported to have a positive opinion about the review sessions. Preconditions and success factors related to implementation were identified and addressed, including improving the pathway for obtaining consent, preparation of VR, defining the role of the chair during the session and building a safe learning environment. Different strategies were developed to ensure findings from sessions were used for quality improvement. VR was successfully implemented on our NICU and we redefined our guideline with various preconditions and success factors. The adjusted guideline can be helpful for implementation of VR in emergency care settings.

The use and application of Lean Management methods to research processes-a scoping review protocol.

INTRODUCTION: Waste in medical research is a relatively well-known issue. However, only a few initiatives exist to address this issue. Lean Management methods (Lean) were developed in industrial manufacturing and later applied within healthcare improvement. Overall, the results from studies of the application of Lean to healthcare appear to be positive in terms of greater efficiency regarding treatment outcomes and patient care. Nevertheless, the application of Lean to improve research processes is not well studied and, given that research alongside clinical practice and experiential knowledge provides the foundation for the treatment and care of patients, it is paramount to identify approaches and review the degree to which they increase efficiency within research procedures. Therefore, this review will scope the landscape of studies that investigated Lean and how to implement Lean in research processes, particularly regarding healthcare research. METHODS AND ANALYSIS: Our approach follows the methodological framework of Arksey and O'Malley for conducting scoping reviews (PRISMA-ScR). The search strategy for this scoping review was developed using the PCC model. We will identify the relevant literature by searching four search databases: Scopus, Web of Science, Academic Search Premier and Business Source Complete. Next, we will use citation pearl growing to identify all relevant published literature. The data charting process will follow the PRISMA-ScR checklist and will be organised using NVivo. We will generate qualitative and quantitative assessments of the extracted data by using NVivo, RStudio and Excel. We will follow the PRISMA-ScR guideline when reporting the results. ETHICS AND DISSEMINATION: The review will comprise existing published studies and no primary data will be collected. Our findings will be shared through open access peer-reviewed journals, national and international conferences and emails to all relevant collaborative relationships. We plan to disseminate our findings via academic social media platforms, newspaper articles and blogposts.

Bridging the gap between research evidence and its implementation in public health practice: case studies of embedded research model.

AIM: To investigate the potential of embedded research in bridging the gap between research evidence and its implementation in public health practice. METHODS: Using a case study methodology, semi-structured interviews were conducted with 4 embedded researchers, 9 public health practitioners, and 4 other stakeholders (2 teachers and 2 students) across four case study sites. Sites and individuals were purposively selected. Sites included two local authorities, one secondary school, and one sports organisation. Thematic data analysis was adopted to analyse the qualitative data. RESULTS: Four themes were identified: (1) building and maintaining relationships, (2) working with stakeholders, (3) informing practice, and (4) critical reflection. CONCLUSIONS: Embedded researchers build and maintain relationships with practitioners and other stakeholders to produce research. Evidence from the co-produced research informs future practice and research to improve service and delivery rendered to the public. Thus, embedded researchers use their role to bridge the research evidence - implementation gap in public health practice.

The effectiveness of knowledge-sharing techniques and approaches in research funded by the National Institute for Health and Care Research (NIHR): a systematic review.

BACKGROUND: The National Institute of Health and Care Research (NIHR), funds, enables and delivers world-leading health and social care research to improve people's health and wellbeing. To achieve this aim, effective knowledge sharing (two-way knowledge sharing between researchers and stakeholders to create new knowledge and enable change in policy and practice) is needed. To date, it is not known which knowledge sharing techniques and approaches are used or how effective these are in creating new knowledge that can lead to changes in policy and practice in NIHR funded studies. METHODS: In this restricted systematic review, electronic databases [MEDLINE, The Health Management Information Consortium (including the Department of Health's Library and Information Services and King's Fund Information and Library Services)] were searched for published NIHR funded studies that described knowledge sharing between researchers and other stakeholders. One researcher performed title and abstract, full paper screening and quality assessment (Critical Appraisal Skills Programme qualitative checklist) with a 20% sample independently screened by a second reviewer. A narrative synthesis was adopted. RESULTS: In total 9897 records were identified. After screening, 17 studies were included. Five explicit forms of knowledge sharing studies were identified: embedded models, knowledge brokering, stakeholder engagement and involvement of non-researchers in the research or service design process and organisational collaborative partnerships between universities and healthcare organisations. Collectively, the techniques and approaches included five types of stakeholders and worked with them at all stages of the research cycle, except the stage of formation of the research design and preparation of funding application. Seven studies (using four of the approaches) gave examples of new knowledge creation, but only one study (using an embedded model approach) gave an example of a resulting change in practice. The use of a theory, model or framework to explain the knowledge sharing process was identified in six studies. CONCLUSIONS: Five knowledge sharing techniques and approaches were reported in the included NIHR funded studies, and seven studies identified the creation of new knowledge. However, there was little investigation of the effectiveness of these approaches in influencing change in practice or policy.

Supporting the next generation of prevention research leaders to conduct effective research-policy partnerships.

Successful research-policy partnerships rely on shared vision, dedicated investment, and mutual benefits. To ensure the ongoing value of chronic disease prevention research, and support research translation and impact, Australia needs funding, university, and policy systems that incentivise and support emerging leaders to drive effective partnerships.

How much is invested in obesity prevention in Australia? An analysis of major research and Federal Government funding, 2013-2022.

Objective and importance of study: Overweight and obesity are the second leading risk factors for death and non-communicable disease in Australia. This study aimed to examine the Australian Federal Government funding landscape for population-level obesity prevention from 2013 to 2022. STUDY TYPE: A retrospective analysis and narrative synthesis of publicly available data on obesity prevention funding from the Federal Government and major federally funded Australian research organisations. METHODS: Searches were conducted of Australian Federal Government Budget documents and funding announcements from the National Health and Medical Research Council (NHMRC), Australian Research Council (ARC) and Medical Research Future Fund (MRFF). Funding allocations targeting obesity prevention, or the prevention of risk factors associated with obesity, were included. These were determined by the presence of keywords related to obesity, unhealthy diet, physical activity and sedentary behaviour. Data were extracted verbatim, coded and narratively synthesised by funding source. RESULTS: From 2013 to 2022, 186 funding allocations for obesity prevention in Australia were identified, totalling approximately A$778 million. The proportion of funding allocated to obesity prevention compared to the total annual budget of each funding source was relatively low: NHMRC = 1.1%; ARC = 0.2%; MRFF = 0.8%; Federal Government = 0.1% (of health budget). Funding for obesity prevention initiatives fluctuated over time. CONCLUSIONS: Findings underscore the need for strategic and ongoing funding allocation to support obesity prevention research, implementation and sustainment of evidence-based obesity prevention initiatives in Australia.

Building prevention research science communication and knowledge translation capacity through multidisciplinary collaboration.

OBJECTIVE: To document the outcomes of a dedicated Science Communication Community of Practice (CoP) for increasing prevention-focused knowledge translation (KT) and evidence uptake. Type of program: Shared priorities and a united vision to communicate the value of prevention research led to the formation of a dedicated Science Communication CoP within an Australian public health prevention-focused research collaboration. Members of the CoP included science communication experts and early- and mid-career researchers (EMCRs) with KT-focused roles. METHODS: The CoP met monthly, with semi-structured meetings led by an experienced science communication professional. A priority of the CoP was to develop resources that could help members and external parties to communicate their findings, especially EMCRs and those working on low-resourced projects. Insights from CoP members were synthesised to document if, and how, the CoP increased communication and KT capacity. RESULTS: CoP members found that participatory dialogue - dialogue that involves sharing perspectives and listening to others in order to develop a shared understanding - helped promote a greater understanding of science communication techniques and led to KT being embedded within projects. The CoP itself resulted in shared narratives and communication outputs that could not have been produced by individual members, primarily due to a lack of dedicated resourcing. Members found that engaging in the CoP increased their use of a range of science communication skills, tactics, and methods (e.g., targeted messaging for policy and practice, use of media and social media, and event management to engage audiences and build trust). LESSONS LEARNT: The CoP helped build a greater working knowledge of science communication among its members, leading to increased KT activities. Within an environment of low resourcing for science communication, bringing researchers together with science communication experts can help promote the communication of synthesised evidence and unified messaging on 'what works for prevention'.

Self-identified rurality in a nationally representative population in the US.

INTRODUCTION: In the US, health services research most often relies on Rural-Urban Commuting Area (RUCA) classification codes to measure rurality. This measure is known to misrepresent rurality and does not rely on individual experiences of rurality associated with healthcare inequities. We aimed to determine a patient-centered RUCA-based definition of rurality. METHODS: In this cross-sectional study, we conducted an online survey asking US residents, 'Do you live in a rural area?' and the rationale for their answer. We evaluated the concordance between their self-identified rurality and their ZIP code-derived RUCA designation of rurality by calculating Cohen's kappa (κ) statistic and percent agreement. RESULTS: Of the 774 participants, 456 (58.9%) and 318 (41.1%) individuals had conventional urban and rural RUCA classifications, respectively. There was only moderate agreement between perceived rurality and rural RUCA classification (κ=0.48; 95% confidence interval (CI)=0.42-0.54). Among people living within RUCA 2-3 defined urban areas (n=51), percent agreement was only 19.6%. Discordance was driven by their perception of the population density, proximity to the nearest neighbor, proximity to a metropolitan area, and the number of homes in their area. Based on our results, we reclassified RUCA 2-3 designations as rural, resulting in an increase in overall concordance (κ=0.56; 95%CI=0.50-0.62). DISCUSSION: Patient-centered rural-urban classification is required to effectively evaluate the impact of rurality on health disparities. This study presents a more patient-centric RUCA-based classification of rurality that can be easily operationalized in future research in situations in which self-reported rural status is missing or challenging to obtain. CONCLUSION: Reclassification of RUCA 2-3 as rural represents a more patient-centric definition of rurality.

Action researchers as "orchestrators" of co-innovation: a theoretical and methodological framework.

BACKGROUND: With the increasing complexity of health care services, more comprehensive and integrated services need to be designed. Action researchers are encouraged to facilitate multiactor participation and user-centered approaches to initiate service development. However, "orchestrating" co-innovation, in which actors have diverse attitudes, agendas, positions of power, and horizons of understanding, is challenging, and a framework that supports action researchers in co-innovation studies lack. The purpose of this article was to explore how action researchers can facilitate multiactor engagement and handle possible challenges and stimulate creativity among diverse stakeholders. METHODS: We have studied and discussed two Scandinavian cases of rehabilitation innovation (for cancer patients and persons with acquired brain injury) where two research teams with action research approaches have acted in an orchestrating role to create co-innovation. RESULTS: We identified four themes that are essential for action researchers to facilitate collaborative and creative co-innovation processes: (1) relational power reflexibility, (2) resource integration, (3) joint understanding, and (4) the facilitation of creativity. These mutually dependent themes constitute a theoretical and methodological framework for of co-innovation. CONCLUSIONS: This paper offers a contribution that supports action researchers in orchestrating diverse actors and their contributions in co-innovation processes.

Development of a person-centred care approach for persons with chronic multimorbidity in general practice by means of participatory action research.

BACKGROUND: The management of persons with multimorbidity challenges healthcare systems tailored to individual diseases. A person-centred care approach is advocated, in particular for persons with multimorbidity. The aim of this study was to describe the co-creation and piloting of a proactive, person-centred chronic care approach for persons with multimorbidity in general practice, including facilitators and challenges for successful implementation. METHODS: A participatory action research (PAR) approach was applied in 13 general practices employing four subsequent co-creation cycles between 2019 and 2021. The target population included adults with ≥3 chronic conditions. Participating actors were general practitioners (GPs), practice nurses (PNs), patients (target group), the affiliated care cooperation, representatives of a health insurer and researchers. Each cycle consisted of a try-out period in practice and a reflective evaluation through focus groups with healthcare providers, interviews with patients and analyses of routine care data. In each cycle, facilitators, challenges and follow-up actions for the next cycle were identified. Work satisfaction among GPs and PNs was measured pre and at the end of the final co-creation cycle. RESULTS: Identified essential steps in the person-centred chronic care approach include (1) appropriate patient selection for (2) an extended person-centred consultation, and (3) personalised goalsetting and follow-up. Key facilitators included improved therapeutic relationships, enhanced work satisfaction for care providers, and patient appreciation of extended time with their GP. Deliberate task division and collaboration between GPs and PNs based on patient, local setting, and care personnel is required. Challenges and facilitators for implementation encompassed a prioritisation tool to support GPs appropriately who to invite first for extended consultations, appropriate remuneration and time to conduct extended consultations, training in delivering person-centred chronic care available for all general practice care providers and an electronic medical record system accommodating comprehensive information registration. CONCLUSIONS: A person-centred chronic care approach targeting patients with multimorbidity in general practice was developed and piloted in co-creation with stakeholders. More consultation time facilitated better understanding of persons' situations, their functioning, priorities and dilemma's, and positively impacted work satisfaction of care providers. Challenges need to be tackled before widespread implementation. Future evaluation on the quadruple aims is recommended.

We-Care-Well: exploring the personal recovery of mental health caregivers through Participatory Action Research.

Family caregivers play a critical role in supporting the recovery journeys of their loved ones, yet the recovery journeys of family caregivers have not been well-explored. Using a Participatory Action Research approach, we explore the personal recovery journeys of family caregivers for individuals with mental illness. This case study involved piloting and exploring the impact of a novel online workshop series offered to mental health caregivers at Ontario Shores Center for Mental Health Sciences. Recovery courses and workshops conventionally engage patients living with mental health conditions. In the current case, the recovery model is adapted to the needs and experiences of their family caregivers, resulting in a pilot workshop series called "We Care Well". Through participant-led discussions, interactive and take-home activities, and experiential learning, caregivers co-created workshop content and engaged in peer-learning on seven personal recovery-oriented topics. This included: self-care, resilience-building, non-violent communication, storytelling, and mental health advocacy. Throughout the sessions, participants implemented their learnings into their caregiving roles, and shared their experiences with the group to progress through their own recovery journeys. The We Care Well series was found to be an effective intervention to adapt and apply the personal recovery framework to mental health caregivers. PAR, and co-design are viable approaches to engage caregivers in mental health research, and can facilitate knowledge exchange, as well as relationship building with peers and program facilitators.

Practice-Oriented Research: An Introduction to New Developments and Future Directions.

Aimed at understanding and improving psychological therapies as they are conducted in clinical routine, practice-oriented research (POR) is now a well-established approach to the scientific foundations of mental health care services. Resting on the accumulation of a wide range of practice-based evidence related to treatment outcome and process, as well as factors associated with the participants of psychotherapy and its context, POR is ripe for new developments - regarding what to investigate and how to investigate it. This paper is the introduction of a series devoted to recent advances and future directions of POR as their pertained to routine outcome monitoring, technologies and artificial intelligence, the integration of constructs and methods from program evaluation and implementation science, and the investigation of populations with limited financial resources across various regions of the world. The series also includes commentaries from two leaders of POR.

Early career researchers in health policy and systems research: insights from freelancers in a non-profit organization in the Philippines.

BACKGROUND: The freelance economy has seen rapid growth worldwide in recent years and the Philippines is not an exception. Freelance workers are becoming increasingly common in healthcare and research. Early career researchers carry out most of scientific research and can play a critical role in advancing public health by bringing new perspectives and diversity to the field. Existing literature has mostly focused on the experiences of early career researchers in an institutional academic setting. This study aimed to understand the experiences of freelance early career researchers in the health policy and systems space in the Philippines. METHODS: This qualitative study collected data from 18 to 22 March 2022 through virtual interview and focus group discussions. Themes and codes were created based on the topic guide developed. New themes and codes were generated as they emerged. Two researchers coded the data using both a priori and emergent codes. Any coding conflicts were resolved through discussions until intercoder agreement was reached. Interpretation and conclusions from the data were developed by 2 researchers with consideration for its context and relationship between themes. RESULTS: Fifteen current and former freelance researchers participated in the study. Most are female, under 35 years old, and with an undergraduate degree as the highest educational attainment. The findings highlight insights and challenges faced by early career researchers in aspects of: (1) work arrangement, (2) tasks, (3) expectations from senior researchers, (4) development in the health policy and systems field, (5) relationship with peers, and (6) motivations for continuing to work as a freelance health policy and systems researcher. CONCLUSION: This study reveals the challenges freelance early career researchers face, highlighting the need for enhanced support and recognition amidst rapidly evolving workforce demands and complex health dilemmas. Recommendations include structured mentorship, professional development, innovative funding models, and the establishment of a supportive network. Advocacy for policies ensuring freelancer inclusion in the economy and policy-making is crucial. Future research should investigate their experiences further, including their roles, transitions, and the impacts of funding trends, to foster their development and integration into public health research and policy.