Multidisciplinary Research Team Research Articles

The establishment of a multiple myeloma clinical registry in the Asia–Pacific region: The Asia–Pacific Myeloma and Related Diseases Registry (APAC MRDR)

BackgroundMultiple myeloma (MM) is the second most common haematological cancer worldwide. Along with related diseases including monoclonal gammopathy of undetermined significance (MGUS), plasma cell leukaemia (PCL) and plasmacytoma, MM incidence is rising, yet it remains incurable and represents a significant disease burden. Clinical registries can provide important information on management and outcomes, and are vital platforms for clinical trials and other research. The Asia–Pacific Myeloma and Related Diseases Registry (APAC MRDR) was developed to monitor and explore variation in epidemiology, treatment regimens and their impact on clinical outcomes across this region. Here we describe the registry’s design and development, initial data, progress and future plans.MethodsThe APAC MRDR was established in 2018 as a multicentre collaboration across the Asia–Pacific, collecting prospective data on patients newly diagnosed with MM, MGUS, PCL and plasmacytoma in Korea, Singapore, Malaysia and Taiwan, with China recently joining. Development of the registry required a multidisciplinary team of clinicians, researchers, legal and information technology support, and financial resources, as well as local clinical context from key opinion leaders in the APAC region. Written informed consent is obtained and data are routinely collected throughout treatment by hospital staff. Data are stored securely, meeting all local privacy and ethics requirements. Data were collected from October 2018 to March 2024.ResultsOver 1700 patients from 24 hospitals have been enrolled onto the APAC MRDR to date, with the majority (86%) being newly diagnosed with MM. Bortezomib with an immunomodulatory drug was most frequently used in first-line MM therapy, and lenalidomide-based therapy was most common in second-line. Establishment and implementation challenges include regulatory and a range of operational issues.ConclusionThe APAC MRDR is providing ‘real-world’ data to participating sites, clinicians and policy-makers to explore factors influencing outcomes and survival, and to support high quality studies. It is already a valuable resource that will continue to grow and support research and clinical collaboration in MM and related diseases across the APAC region.

The efficacy of transcranial direct current stimulation in the treatment of anorexia nervosa: a randomized double-blind clinical trial

BackgroundAnorexia nervosa (AN) is a life-threatening disease with a low effectiveness of treatment. The high relapse and mortality rate indicate new treatment approaches are needed. Here, we represent the protocol for randomized clinical trial (RCT) of transcranial direct current stimulation (tDCS) efficiency in the AN treatment. The main purpose of the 3-week RCT is to determine the effect of tDCS on the mental state and advances in nutritional rehabilitation in patients with AN.Methods50 female inpatients (13-25 years old, body mass index (BMI) 17.5 kg/m2 or less) will be randomly allocated into groups: active (n=25) and sham (n=25) tDCS. Thirty 25-minute tDCS sessions (applied current at 2mA) will be given to DLPFC (F3 anode/F4 cathode) twice a day for 3 weeks on working days parallel to treatment as usual. The primary outcome measures include changes in symptoms related to eating disorders, as assessed by the Eating Attitudes Test (EAT-26), following tDCS sessions over a 3-week trial period. The secondary outcome measures include changes in: brain bioelectric activity, anthropometric measurements, mood, nutritional status, neurocognition, psychological symptoms, selected biological markers related to stress, food intake, inflammation and neurotrophins.DiscussionThis paper describes the evaluation of a 3-week tDCS-based intervention for AN patients. The study design was developed by a multidisciplinary research team to assess the treatment effect, taking into account various types of variables. This approach could help in better understanding the potential therapeutic tDCS strategy in AN.Clinical trial registrationwww.ClinicalTrials.gov, identifier NCT05814458.

Systematically assessing the quality of dental electronic health record data for an investigation into oral health care disparities.

This work describes the process by which the quality of electronic health care data for a public health study was determined. The objectives were to adapt, develop, and implement data quality assessments (DQAs) based on the National Institutes of Health Pragmatic Trials Collaboratory (NIHPTC) data quality framework within the three domains of completeness, accuracy, and consistency, for an investigation into oral health care disparities of a preventive care program. Electronic health record data for eligible children in a dental accountable care organization of 30 offices, in Oregon, were extracted iteratively from January 1, 2014, through March 31, 2022. Baseline eligibility criteria included: children ages 0-18 with a baseline examination, Oregon home address, and either Medicaid or commercial dental benefits at least once between 2014 and 2108. Using the NIHPTC framework as a guide, DQAs were conducted throughout data element identification, extraction, staging, profiling, review, and documentation. The data set included 91,487 subjects, 11 data tables comprising 75 data variables (columns), with a total of 6,861,525 data elements. Data completeness was 97.2%, the accuracy of EHR data elements in extracts was 100%, and consistency between offices was strong; 29 of 30 offices within 2 standard deviations of the mean (s = 94%). The NIHPTC framework proved to be a useful approach, to identify, document, and characterize the dataset. The concepts of completeness, accuracy, and consistency were adapted by the multidisciplinary research team and the overall quality of the data are demonstrated to be of high quality.

Being Seen as a Unique Person is Essential in Palliative Care at Home and Nursing Homes: A Qualitative Study With Patients and Relatives.

Incorporation of a palliative care approach is increasingly needed in primary care and nursing home care because most people with a life-limiting illness or frailty live there. To explore patients' and relatives' experiences of palliative care at home and in nursing homes. Generic qualitative research in a purposive sample of patients with an estimated life expectancy of <1 year, receiving care at home or in a nursing home, and their relatives. Data is collected through semi-structured interviews and thematically analyzed by a multidisciplinary research team. Seven patients and five relatives participated. Three essential elements of palliative care and their contributing factors emerged: 1) be seen (personal attention, alignment to who the patient is as a person, and feeling connected) 2) information needs (illness trajectory and multidimensional symptoms and concerns, and 3) ensuring continuity (single point of contact, availability of HCPs, and coordination of care). Patients and relatives experienced loss of control and safety if these essentials were not met, which depended largely on the practices of the individual health care professional. In both primary care and nursing home care, patients and relatives expressed the same essential elements of palliative care. They emphasized the importance of being recognized as a unique person beyond their patient status, receiving honest and clear information aligned with their preferences, and having care organized to ensure continuity. Adequate competence and skills are needed, together with a care organization that enables continuity to provide safe and person-centered care.

A study protocol for live and deceased donor uterus transplantation as a treatment for women with uterine factor infertility.

Uterus transplantation (UTx) is an emerging treatment option for women with uterine factor infertility (UFI) or the absence of a functional uterus. This is the study protocol for the first human UTx clinical trial in Australia. This protocol outlines the approved training program used to plan, diagnose, screen, and treat patients who may be eligible for UTx using living and deceased donors. This multi-site clinical research study includes three tertiary hospital sites within New South Wales (NSW), Australia - Prince of Wales, Royal Hospital for Women and Westmead Hospitals. Our UTx protocol is based on that used by our collaborative partner, the inaugural UTx team in Gothenburg, Sweden. The Swedish UTx team provides ongoing preceptorship for the Australian UTx team. Ethics approval for six UTx procedures using living or deceased donors (Western Sydney Local Health District Human Research Ethics Committee: 2019/ETH138038) was granted in 2020. Results from surgeries and live births will be published. Data will be prospectively entered into the registry of the International Society of Uterus Transplantation (ISUTx), a sub-section of The Transplantation Society (TTS). ACTRN12622000917730. A multidisciplinary research team has been formed between three tertiary hospitals in Sydney - The Royal Hospital for Women, Prince of Wales and Westmead Hospitals; and with the Swedish UTx, University of Gothenburg. The Swedish team pioneered animal and human UTx studies since 1998, including publishing the first live birth after UTx. (1) This Australian trial commenced in January 2023. Uterus transplantation gives women with UFI the opportunity to be gestational and genetic mothers. It is a complex procedure for both the donor and recipient, with medical and surgical risks. An extensive multidisciplinary approach is required to optimise patient safety and graft outcomes. This protocol outlines our Australian UTx team strategy for screening, recruitment, surgical approach, and clinical management of UTx recipients and donors.

Exhibition research and practice at CERN: challenges and learnings of science communication `in the making'

This practice insight paper presents a reflection on a four-year collaboration between science communication practitioners and researchers, using CERN's new education and outreach centre as a case study. The development of interactive exhibitions for this centre was informed by a variety of front-end and formative evaluation studies, from online surveys to exhibit prototype testing. As a multidisciplinary team of exhibition developers and social science researchers, we describe and discuss the challenges of — as well as learnings from — working together. Our experience will be relevant for everyone curious to discover `behind-the-scenes' work of research-informed exhibition development in a large scientific laboratory.

Adapting telehealth to address health equity: Perspectives of primary care providers across the United States.

Telehealth has the potential to increase access to care for medically underserved patients. This qualitative study aimed to identify telecare practices used during the COVID-19 pandemic to meet the needs of patients experiencing homelessness, patients with disabilities, and patients with language preference other than English (LOE). We conducted a secondary qualitative data analysis of 47 clinician interviews at Federally Qualified Health Centers (FQHCs) around the country. Using thematic analysis, transcripts were coded by line-by-line by five qualitative researchers. A multidisciplinary team of telehealth experts, researchers and primary care clinicians reviewed memos and excerpts to generate major themes. We identified six main areas demonstrating how community providers developed strategies or practices to improve access to care for vulnerable patients: reaching patients experiencing homelessness, serving deaf and hard of hearing patients, improving access for patients with disabilities, serving patients with LOE, improving access for mental and behavioral health services, and educating patients about telehealth. During the pandemic, FQHCs developed innovative solutions to provide access to care for the unhoused, including using telehealth in shelters, vans, and distributing devices like mobile phones and tablets. Telehealth reduced transportation burdens for patients with disabilities and reduced no-show rates for mental health services by adapting group therapy via telehealth features (like break-out rooms) and increasing provider capacity. Our study identified strategies adopted by FQHCs to serve underserved populations during the COVID-19 pandemic. Our findings highlight the need for enduring strategies to improve health equity through telehealth..

Trauma Registry Professionals' Perspectives on the Secondary Traumatic Stress Component of Compassion Fatigue: A Qualitative Study.

Secondary traumatic stress and compassion fatigue have been studied among trauma clinicians yet have not been explored in trauma registry professionals (TRPs). The purpose of this study is to describe the secondary traumatic stress component of compassion fatigue among TRPs. A qualitative, phenomenological study was conducted to examine TRPs' experiences with the secondary traumatic stress component of compassion fatigue. The primary investigator assembled a multidisciplinary team of researchers, including nursing leadership, registry educators, mental health experts, and qualitative researchers. Two focus groups were held virtually in January 2021, using an interview guide designed by the research team. Participants were recruited via an email sent to a list of colleagues known to the research team from training classes held nationally and selected for their diverse clinical experiences, years in the role, demographic background, and trauma center representation. The recorded sessions were independently transcribed and analyzed by a five-member subgroup of the research team; the analysis concluded in December 2022. Nine TRPs participated in the focus groups. Participants came from Level I, II, and III adult and pediatric trauma centers and military centers. Four themes emerged from the data: disquieting and rewarding work, reactions and emotional responses, the influence of personal histories and background, and coping strategies. A qualitative analysis of focus group discussions revealed the secondary traumatic stress component of compassion fatigue is present in the TRP.

Mapping the evolution of algorithmic HRM (AHRM): a multidisciplinary synthesis

High levels of confusion persist around the term “algorithm” in general; and in addition to this, there is also conceptual confusion around the application of algorithms to human resource management (HRM) strategy and functions. Although there are several systematic reviews of various algorithmic applications to HRM and many of its functions, no comprehensive evolutionary map of the emergent field of algorithmic HRM (AHRM) could be found in the academic literature. This study has dual aims. The first is to provide conceptual clarity for the field of AHRM, and the second is to map the evolution of AHRM from 2000 to 2022. To address the first aim, we conduct a multidisciplinary synthesis of the concepts related to algorithms which results in a General Framework for Algorithmic Decision-Making. This framework then informs the empirical part of the study which addresses the second aim. A science mapping review is employed to chart and assess the extant literature on algorithmic HRM from 2000 to 2022. This study presents a General Framework for Algorithmic Decision-Making across all business functions and then a Framework for Algorithmic AHRM Tools. This provides conceptual clarity and distinguishes between automated and augmented HR decision-making. Findings also reveal the multidisciplinary nature of this emergent field of inquiry and point to current research, which focuses on specialized applications for HR functions such as workforce planning, learning and development, allocation and scheduling, and recruitment; but lacks emphasis on more integrative strategic HRM contexts. The study also has implications for organizational strategic decision-making. HR practitioners may need to form project teams with their information technology (IT) and data analyst colleagues when making strategic decisions about algorithmic applications for HR strategy and HR functions. This also lends itself to future research with multidisciplinary research teams including HR researchers along with computer scientists, computational engineers, and data analysts.

Abortion information-seeking experiences among women who obtained abortions in Kinshasa, DRC: Results from a qualitative study.

Little is known about the process of seeking information related to abortion care options among women in the Democratic Republic of Congo (DRC). Understanding how women obtain information can help identify opportunities for intervention to increase awareness and use of safe pregnancy termination options. Using qualitative data collected from women in Kinshasa, DRC who reported having an abortion in the last 10 years, this study aims to determine how women navigate obtaining information about their options for abortion and the role of their social network in their information-seeking processes. Data for this analysis come from a mixed-method study of abortion in Kinshasa conducted from December 2021 to April 2022. Fifty-two qualitative interviews followed a structured interview guide, including open-ended questions and probes, developed by a multidisciplinary team of researchers in Kinshasa and the United States. Inductive thematic analysis was conducted using Atlas.ti, and a thematic analysis matrix was used to describe the major themes and subthemes. Thematic analysis revealed two main themes with nested subthemes. The first and most salient theme highlighted the highly selective and narrow information search process women engaged in, involving no others or very few individuals (e.g., partners, women in one's community, or providers) that the pregnant woman chose strategically. The second theme revealed the heterogeneous and often stigmatizing nature of these interactions, including attempts at deterrence from many sources and information of varying completeness and accuracy. While the recent liberalization of the abortion law in the DRC is essential to improve access to safe abortion, public health gains will not materialize unless they are accompanied by community-level actions to raise awareness about the legality and availability of safe abortions services, including medication abortion pills for safe self-managed abortion.

Remote measurement based care (RMBC) interventions for mental health-Protocol of a systematic review and meta-analysis.

Poor management of mental illnesses is associated with lower treatment adherence, chronification, avoidable re-hospitalisations, and high costs. Remote measurement based care (RMBC) interventions have gained increasing relevance due to its potential in providing a comprehensive and patient-centric approach to mental health management. The systematic review and meta-analysis aims to provide a comprehensive overview and analysis of existing evidence on the use of RMBC for patients with mental illness and to examine the effectiveness of RMBC interventions in alleviating disorder-specific symptoms, reducing relapse and improving recovery-oriented outcomes, global functioning, and quality of life. Our multidisciplinary research team will develop a comprehensive search strategy, adapted to each electronic database (PubMed, Medline, Embase, and PsychINFO) to be examined systematically. Studies with patients formally diagnosed by the International Classification of Diseases or the Diagnostic and Statistical Manual of Mental Disorders which include assessment of self-reported psychiatric symptoms will be included. Publications will be reviewed by teams of independent researchers. Quality of studies will be assessed using the Cochrane Collaboration's tool for assessing risk of bias. Outcomes cover symptom-focused or disease-specific outcomes, relapse, recovery-focused outcomes, global functioning, quality of life and acceptability of the intervention. Further data that will be extracted includes study characteristics, target population, intervention, and tracking characteristics. Data will be synthesised qualitatively, summarising findings of the systematic review. Randomised controlled trials (RCTs) will be considered for meta-analysis if data is found comparable in terms of mental illness, study design and outcomes. Cumulative evidence will be evaluated according to the Grading of Recommendations Assessment, Development and Evaluation framework. Trial registration number: PROSPERO CRD42022356176.

Future directions for patient engagement in research: a participatory workshop with Canadian patient partners and academic researchers

BackgroundPatient engagement in research (also commonly referred to as patient or patient and public involvement in research) strives to transform health research wherein patients (including caregivers and the public) are regularly and actively engaged as multidisciplinary research team members (i.e. patient partners) working jointly towards improved health outcomes and an enhanced healthcare system. To support its mindful evolution into a staple of health research, this participatory study aimed to identify future directions for Canadian patient engagement in research and discusses its findings in the context of the international literature.MethodsThe study met its aim through a multi-meeting pan-Canadian virtual workshop. Participants (n = 30) included Strategy for Patient-Oriented Research-funded academic researchers and patient partners identified through a publicly available database, personal and professional networks and social media. All spoke English, could access the workshop virtually, and provided written informed consent. The workshop was composed of four, 1.5–3-h virtual meetings wherein participants discussed the current and preferred future states of Canadian patient engagement in research. Workshop discussions (i.e. data) were video and audio recorded. Themes were generated through an iterative process of inductive thematic analysis that occurred concurrently with the multi-week workshop.ResultsOur participatory and iterative process identified 10 targetable areas of focus for the future of Canadian patient engagement in research. Five were categorized as system-level (systemic integration; academic culture; engagement networks; funding models; compensation models), one as researcher-level (engagement processes), and four crossed both levels (awareness; diversity and recruitment; training, tools and education; evaluation and impact). System level targetable areas called for reshaping the patient engagement ecosystem to create a legitimized and supportive space for patient engagement to be a staple component of a learning health system. Researcher level targetable areas called for academic researchers and patient partners to collaboratively generate evidence and apply knowledge to inform values and behaviours necessary to foster and sustain supportive health research spaces that are accessible to all.ConclusionsFuture directions for Canadian patient engagement in research span 10 interconnected targetable areas that require strong leadership and joint action between patient partners, academic researchers, and health and research institutions if patient engagement is to become a ubiquitous component of a learning health system.

Can RESPiratory hospital Admissions in children with cerebral palsy be reduced? A feasibility randomised Controlled Trial pilot study protocol (RESP-ACT)

IntroductionThe most common cause of morbidity and mortality in children with severe cerebral palsy (CP) is respiratory disease. BREATHE-CP (Better REspiratory and Airway Treatment and HEalth in Cerebral Palsy) is...

Exploring hospital mealtime experiences of older inpatients, caregivers and staff using photovoice methods.

To gather and understand the experience of hospital mealtimes from the perspectives of those receiving and delivering mealtime care (older inpatients, caregivers and staff) using photovoice methods to identify touchpoints and themes to inform the co-design of new mealtime interventions. This study was undertaken on acute care wards within a single metropolitan hospital in Brisbane, Australia in 2019. Photovoice methods involved a researcher accompanying 21 participants (10 older patients, 5 caregivers, 4 nurses and 2 food service officers) during a mealtime and documenting meaningful elements using photographs and field notes. Photo-elicitation interviews were then undertaken with participants to gain insight into their experience. Data were analysed using inductive thematic analysis, involving a multidisciplinary research team including a consumer. Themes were identified across the three touchpoints: (1) preparing for the meal (the juggle, the anticipation), (2) delivering/receiving the meal (the rush, the clutter and the wait) and (3) experiencing the meal (the ideal, pulled away and acceptance). Despite a shared understanding of the importance of meals and shared vision of 'the ideal' mealtime, generally this was a time of tension, missed cares and dissatisfaction for staff, patients and caregivers. There was stark contrast in some aspects of mealtime experience, with simultaneous experiences of 'the rush' (staff) and 'the wait' (patients and caregivers). There was an overwhelming sense of acceptance and lack of control over change from all. This study identified themes during hospital mealtimes which have largely gone unaddressed in the design of mealtime interventions to date. This research may provide a framework to inform the future co-design of mealtime interventions involving patients, caregivers and multidisciplinary staff, centred around these key touchpoints. Mealtimes are experienced differently by patients, caregivers, nurses and food service officers across three key touchpoints: preparing for, delivering/receiving and experiencing the meal. Improving mealtime experiences therefore necessitates a collaborative approach, with co-designed mealtime improvement programs that include specific interventions focusing each touchpoint. Our data suggest that improvements could focus on reducing clutter, clarifying mealtime roles and workflows and supporting caregiver involvement. What problem did the study address? Mealtimes are the central mechanism to meet patients' nutritional needs in hospital; however, research consistently shows that many patients do not eat enough to meet their nutritional requirements and that they often do not receive the mealtime assistance they require. Interventions to improve hospital mealtimes have, at best, shown only modest improvements in nutritional intake and mealtime care practices. Gaining deeper insight into the mealtime experience from multiple perspectives may identify new opportunities for improvement. What were the main findings? Patients, caregivers and staff have shared ideals of comfort, autonomy and conviviality at mealtimes, but challenges of complex teamwork and re-prioritisation of mealtimes in the face of prevailing power hierarchies make it difficult to achieve this ideal. There are three discrete touchpoints (preparing for, delivering/receiving and experiencing the meal) that require different approaches to improvement. Our data suggests a need to focus improvement on reducing clutter, clarifying mealtime roles and workflows and supporting caregivers. Where and on whom will the research have an impact? The research provides a framework for multidisciplinary teams to begin co-designing improvements to mealtime care to benefit patients, caregivers and staff, while also providing a method for researchers to understand other complex care situations in hospital. This manuscript is written in adherence with the Standards for Reporting Qualitative Research. Patients and caregivers were involved in the conception and design of the study through their membership of the hospital mealtime reference group. A consumer researcher (GP) was involved in the team to advise on study conduct (i.e. recruitment methods and information), data analysis (i.e. coding transcripts), data interpretation (i.e. review and refinement of themes) and manuscript writing (i.e. review and approval of final manuscript).

Development of an integrated and decentralised skin health strategy to improve experiences of skin neglected tropical diseases and other skin conditions in Atwima Mponua District, Ghana.

Integrated strategies are recommended to tackle neglected tropical diseases of the skin (skin NTDs), which pose a substantial health and economic burden in many countries, including Ghana. We describe the development of an integrated and decentralised skin health strategy designed to improve experiences of skin NTDs in Atwima Mponua district in Ashanti Region. A multidisciplinary research team led an iterative process to develop an overall strategy and specific interventions, based on a theory of change informed by formative research conducted in Atwima Mponua district. The process involved preparatory work, four co-development workshops (August 2021 to November 2022), collaborative working groups to operationalise intervention components, and obtaining ethical approval. Stakeholders including affected individuals, caregivers, other community members and actors from different levels of the health system participated in co-development activities. We consulted these stakeholders at each stage of the research process, including discussion of study findings, development of our theory of change, identifying implementable solutions to identified challenges, and protocol development. Participants determined that the intervention should broadly address wounds and other skin conditions, rather than only skin NTDs, and should avoid reliance on non-governmental organisations and research teams to ensure sustainable implementation by district health teams and transferability elsewhere. The overall strategy was designed to focus on a decentralised model of care for skin conditions, while including other interventions to support a self-care delivery pathway, community engagement, and referral. Our theory of change describes the pathways through which these interventions are expected to achieve the strategy's aim, the assumptions, and problems addressed. This complex intervention strategy has been designed to respond to the local context, while maximising transferability to ensure wider relevance. Implementation is expected to begin in 2023.

The feasibility and acceptability of a rewards system based on food purchasing behaviour in secondary school cashless canteens: the Eat4Treats (E4T) cluster feasibility, non-randomised, controlled intervention study

BackgroundUsing rewards may be an effective method to positively influence children’s eating behaviour but evidence to date is limited, particularly in older children. The cashless canteen systems in schools provides a unique opportunity to implement a food-based reward scheme but intervention development work and feasibility testing is needed. The overall aim of the E4T feasibility study was to examine the feasibility and acceptability of implementing a rewards scheme based on the food purchasing behaviour of pupils in cashless canteens in secondary schools.MethodsA non-randomised, controlled, parallel-group cluster feasibility study conducted in four secondary schools (two intervention and two control) serving areas of the highest social deprivation in Northern Ireland. During the 4-month trial, pupils earned points for foods purchased at the school canteen, with better nutritional choices having a higher value. Pupils could exchange the points they earned for rewards (e.g. stationery, vouchers, sports equipment) via the E4T website. Qualitative and quantitative data was collected from year 9 and 10 pupils (boys and girls aged 12–14 years), teachers and canteen staff to address the feasibility questions.ResultsTwo intervention (one urban, one rural) and one control (urban) school completed the study. Seventy-one percent of 12–14-year-old pupils consented to take part; 1% of parents opted their child out of the study. Questionnaire completion rates were high (6 and 11% of questionnaires were partially completed at baseline and follow-up respectively). Collecting data on food consumed in the canteen was challenging logistically. Focus groups with pupils indicated that the overall concept of E4T was well received and there was a high degree of satisfaction with the rewards available. Pupils and teachers made several suggestions for improvements.ConclusionsE4T was successfully implemented as a result of collaboration between schools, school canteens and cashless canteen providers working with a multidisciplinary research team. It was acceptable to pupils, teachers and canteen staff. The findings suggest a few areas for refining implementation and evaluation processes that would need to be considered in the design of a larger trial, particularly resources required to streamline implementation and ways to optimise pupil engagement.Trial registrationUnder review with https://www.clinicaltrials.gov (retrospective registration—reg number and weblink to be added).

In Pursuit of Ethical and Inclusive Research: What Ethics Committees and Disability Researchers Can Learn From Each Other

Across disciplines, qualitative researchers have documented epistemological and practical tensions in the ethical review of community-based and participatory research, with many arguing that ethics committees’ decisions perpetuate the exclusion of marginalised communities from research engagement. In the existing literature, the research team and the ethics committee are often characterised as staunch opponents. Conversely, in our recent qualitative research addressing communication about sexuality with young people with cerebral palsy who use communication methods other than speech (augmentative and alternative communication), we found that constructive collaboration between researchers and committee members yielded novel insights. Co-authored by a multi-disciplinary research team and the former chair of a Human Research Ethics Committee, this reflexive case study identified three key tensions which arose in the ethical review of research involving this purportedly marginalised population, which reflected the wider importance of trust. We propose a series of practical recommendations to support productive collaboration in the pursuit of safe, inclusive and community-driven research.

Evaluating the Applicability and Appropriateness of ChatGPT as a Source for Tailored Nutrition Advice: A Multi-Scenario Study

Background: In the rapidly evolving domain of healthcare technology, the integration of advanced computational models has opened up new possibilities for personalized nutrition guidance. The emergence of sophisticated language models, such as Chat Generative Pre-training Transformer (ChatGPT), offers potential in providing interactive and tailored dietary advice. However, concerns remain about the applicability and appropriateness of ChatGPT's recommendations, especially for those with distinct health conditions. Objectives: This study aimed to evaluate the reliability of ChatGPT as a source of nutritional advice. Methods: Three hypothetical scenarios representing various health conditions were presented alongside precise dietary requirements. ChatGPT was tasked to generate personalized dietary programs, encompassing meal timing, specific caloric portions (measured in grams and spoons), as well as alternative meal options for each scenario. Following this, ChatGPT’s generated dietary programs underwent a thorough review by a multidisciplinary team of nutritionist, specialist physicians and clinical researchers. The evaluation focused on the programs' suitability, alignment with dietary standards, consideration of individual health factors, and additional guidance Safety. Results: ChatGPT demonstrated its ability to generate various options of meal plans in accordance with basic nutrition principles. However, there are apparent issues with the recommended individual macronutrient distribution, handling health conditions, drug interactions, and setting realistic weight loss goals. Conclusions: While ChatGPT exhibits promise as a dietary program generator, its application for intervention should be restricted to certified nutrition professionals. Until July 2023, it is not advisable for patients to engage in self-prescription using ChatGPT version 3.5, owing to its inability to provide professional knowledge and acceptable guidance, particularly for individuals with co-existing conditions. The prevailing absence of clinical reasoning highlights the importance of employing ChatGPT solely as a tool, rather than relying on it as an autonomous decision-maker. Its lack of clinical reasoning highlighted the need for human intervention and expert collaboration for precise personalized evaluations.

How co-production can help cancer prevention among people experiencing homelessness: The CANCERLESS experience.

Introduction: People experiencing homelessness (PEH) face many barriers accessing to public services, but patient Navigation (PN) is associated with improvements in a range of health outcomes, including timely access to healthcare for them (Carmichael et al., 2022).&#x0D; Target Population: Health and social care professionals and individuals with lived experience of homelessness from Austria, Greece, Spain, and the United Kingdom.&#x0D; Population involvement: A series of co-adaptation focus group discussions were conducted with health and social care professionals and individuals with lived experience of homelessness aiming at co-adapting and informing the PN for cancer prevention in Europe.&#x0D; Methodology: Focus group discussions were held in field settings and/or online via videoconferencing platforms in four countries (Austria, Greece, Spain, and the U.K.) during December 2021 and January 2022, and were facilitated by a multidisciplinary team of researchers. A total of seven focus group discussions were conducted, with an overall sample size of 56 participants comprising 41 professional key informants and 15 persons currently experiencing homelessness. A structured topic schedule was used to guide the discussion, and to ensure consistency in the cross-national data collection. Focus group discussions were audio-recorded and transcribed verbatim in their respective languages, either manually or using appropriate software. In the first stage of analysis, researchers adopted an inductive thematic approach. Informed by this analytical process, each of the four partner countries then produced a summary of their focus group discussion(s) with the key decisions, outcomes, and themes organised according to this framework.&#x0D; Results: The core components of PN programmes for cancer prevention among PEH agreed cross-nationally with all the relevant key participants are (1) Promote cancer awareness and self-management (Facilitate the delivery of cancer education; Promote healthy behaviours and preventative measures; Encourage user involvement in health-related decisions), (2) Identify health needs and barriers (Develop a personalised approach to assessing user need; Seek solutions regarding barriers to care), (3) Co-ordinate access to care (Develop trusting relationships with and facilitate communication between local health and social care providers; Enhance understanding of the needs of PEH among local health and social care providers; Arrange referrals to healthcare services and cancer screening; Co-ordinate and support attendance of appointments), (4) Offer practical assistance (Arrange transportation, mobile phones, clothing, access to hygiene facilities, and storage of medication; Assist with completion of paperwork).&#x0D; Lessons learned: Results from the discussions indicate a high level of consistency and cross-national agreement about what the core components of the intervention should be, and how this should be designed and implemented.&#x0D; Next Steps: This intervention will be adapted to reflect the country-specifics, to ensure that the PN is appropriate to the four local contexts in which it is piloted.&#x0D; &#x0D; Bibliography&#x0D; Carmichael, C., Smith, L., Aldasoro, E., Gil-Salmerón, A., Alhambra-Borrás, T., Doñate-Martínez, A.,&#x0D; Seiler-Ramadas, R. &amp; Grabovac, I. (2022) Exploring the application of the navigation model with&#x0D; people experiencing homelessness: a scoping review, Journal of Social Distress and Homelessness. DOI:&#x0D; 10.1080/10530789.2021.2021363

Primary Care Family Physicians’ Experiences with Clinical Integration: A Scoping Review of Qualitative and Mixed Reviews

Background: Clinical (service) integration in primary care settings describes how healthcare services are coordinated over time across healthcare contexts to meet patient care needs. Promoting integrated care with interventions that lack systematic approaches can unintentionally increase the complexity and fragmentation of the healthcare system. To improve care integration and healthcare service planning, a systematic approach to understanding its many influencing factors is paramount. This phase I study aims to generate a comprehensive map of family physician (FP) perceived factors, across diseases and patient demographics, influencing how services are integrated for patients. &#x0D; Methods: The protocol development is guided by Arksey and O’Malley’s scoping review methodology framework. Keywords and MeSH terms were contributed by a multidisciplinary team of healthcare professionals, researchers, and patient representatives through an iterative discussion. An Information Specialist with clinical research expertise tested keywords and MeSH terms to build a search strategy using MEDLINE. The strategy was then adjusted for the EMBASE and CINAHL databases. All identified articles were imported into Covidence platform, and 228 duplicates were removed. Two independent reviewers screened 1,771 studies by their titles and abstracts. Of them, 264 studies were reviewed in full text against the selection criteria and their references were hand-searched. A total of 91 articles were included, and over 2,800 factors were extracted. The factors are being or will be coded into themes the Clinical Integration Framework, a merging of two existing models identified from literature and modified. Within each theme, similar codes are clustered together as a subtheme. &#x0D; Discussion: The identified factors will help develop a survey in Phase II study to ascertain high impact factors for intervention(s), as well as thematic and evidence gaps to guide future research. The study findings will be shared with stakeholders to promote awareness of clinical integration issues through multiple channels: publications and conferences for researchers and care providers, an executive summary for clinical leaders and policy makers, and social media for the public.