Dementia in-patient units in psychiatric hospitals: research priority setting.

AIMS AND METHOD: Dementia in-patient units (DIU) are mental health wards that care for people living with dementia (PLWD) whose symptoms are causing severe distress or potential risk. DIUs look after some of the most vulnerable and unwell people in society, yet they are environments that are underresearched: a recent systematic review revealed only 36 articles worldwide relating to DIUs. To better understand research priorities in DIUs, we undertook a two-round online Delphi survey of PLWD with experience of DIUs, their carers and professionals who work in DIUs. RESULTS: Ten research priorities were described and ranked. The top three were how to use non-pharmacological techniques to manage non-cognitive symptoms of dementia, supporting families and better understanding of how to discharge PLWD safely and healthily. CLINICAL IMPLICATIONS: This is the first Delphi consensus to describe DIU research priorities. This paper will help researchers focus on the areas that matter most to people who use DIUs.

Overarching Priorities for Health and Care Research in the United Kingdom: A Coproduced Synthesis of James Lind Alliance 'Top 10s'.

INTRODUCTION: James Lind Alliance (JLA) Priority Setting Partnerships (PSPs) produce 'Top 10' lists of health and care research priorities through a structured, shared decision-making process with patients or service users, carers and health or care professionals who identify questions that are most important to them. To date, over 150 PSPs in different areas of health and care have published research priorities. Some PSPs share similar priorities, which could be combined, promoted and addressed through collaborative research to increase value and reduce research waste. AIM: The aim of this study was to identify overarching themes common to JLA PSP priorities across different areas of health and care. METHODS: Our analysis included 'Top 10' research priorities produced by UK-based JLA PSPs between 2016 and 2020. The priorities were coded deductively by the Health Research Classification System (HRCS) health category and research activity. We then carried out online workshops with patients, service users and carers to generate new codes not already captured by this framework. Within each code, multistakeholder inductive thematic analysis was used to identify overarching themes, defined as encompassing priorities from three or more PSPs covering two or more health categories. We used codesign methods to produce an interactive tool for end users to navigate the overarching themes. RESULTS: Five hundred and fifteen research priorities from 51 PSPs were included in our analysis. The priorities together encompassed 20 of 21 HRCS health categories, the most common being 'generic health relevance' (22%), 'mental health' (18%) and 'musculoskeletal' (14%). We identified 89 overarching themes and subthemes, which we organised into a hierarchy with seven top-level themes: quality of life, caregivers and families, causes and prevention, screening and diagnosis, treatment and management, services and systems and social influences and impacts. CONCLUSION: There are many overarching themes common to research priorities across multiple areas of health and care. To facilitate new research and research funding, we have developed an interactive tool to help researchers, funders and patients or service users to explore these priority topics. This is freely available to download online. PATIENT OR PUBLIC CONTRIBUTION: Patients or service users and carers were involved throughout the study, including deciding the aims, designing the study, analysing priorities to identify themes, interpreting and reporting the findings.

Identifying research priorities for improving information and support for patients undergoing breast cancer surgery: a UK patient-centred priority setting project.

PURPOSE: To use robust consensus methods with individuals with lived breast cancer experience to agree the top 10 research priorities to improve information and support for patients undergoing breast cancer surgery in the UK. METHODS: Research uncertainties related to information and support for breast cancer surgery submitted by patients and carers were analysed thematically to generate summary questions for inclusion in an online Delphi survey. Individuals with lived breast cancer experience completed two Delphi rounds including feedback in which they selected their top 10 research priorities from the list provided. The most highly ranked priorities from the survey were discussed at an in-person prioritisation workshop at which the final top 10 was agreed. RESULTS: The 543 uncertainties submitted by 156 patients/carers were categorised into 63 summary questions for inclusion in the Delphi survey. Of the 237 individuals completing Round 1, 190 (80.2%) participated in Round 2. The top 25 survey questions were carried forward for discussion at the in-person prioritisation workshop at which 17 participants from across the UK agreed the final top 10 research priorities. Key themes included ensuring patients were fully informed about all treatment options and given balanced, tailored information to support informed decision-making and empower their recovery. Equity of access to treatments including contralateral mastectomy for symmetry was also considered a research priority. CONCLUSION: This process has identified the top 10 research priorities to improve information and support for patients undergoing breast cancer surgery. Work is now needed to develop studies to address these important questions.

Understanding barriers and facilitators to palliative and end-of-life care research: a mixed method study of generalist and specialist health, social care, and research professionals.

BACKGROUND: Palliative care provision should be driven by high quality research evidence. However, there are barriers to conducting research. Most research attention focuses on potential patient barriers; staff and organisational issues that affect research involvement are underexplored. The aim of this research is to understand professional and organisational facilitators and barriers to conducting palliative care research. METHODS: A mixed methods study, using an open cross-sectional online survey, followed by working groups using nominal group techniques. Participants were professionals interested in palliative care research, working as generalist/specialist palliative care providers, or palliative care research staff across areas of North West England. Recruitment was via local health organisations, personal networks, and social media in 2022. Data were examined using descriptive statistics and content analysis. RESULTS: Participants (survey n = 293, working groups n = 20) were mainly from clinical settings (71%) with 45% nurses and 45% working more than 10 years in palliative care. 75% were not active in research but 73% indicated a desire to increase research involvement. Key barriers included lack of organisational research culture and capacity (including prioritisation and available time); research knowledge (including skills/expertise and funding opportunities); research infrastructure (including collaborative opportunities across multiple organisations and governance challenges); and patient and public perceptions of research (including vulnerabilities and burdens). Key facilitators included dedicated research staff, and active research groups, collaborations, and networking opportunities. CONCLUSIONS: Professionals working in palliative care are keen to be research active, but lack time, skills, and support to build research capabilities and collaborations. A shift in organisational culture is needed to enhance palliative care research capacity and collaborative opportunities across clinical and research settings.

Just a head knock? Emergency physicians need to get serious about concussion.

Attention and awareness regarding concussion injury in Australia have significantly increased in the last decade. Although most of this increase is because of discussion regarding concussions from sporting endeavours, the majority of concussions are from non-sport environments including motor vehicle crashes, workplace incidents, falls, accidents, assault and intimate partner violence. In all cases, hospital EDs are the first point of contact, yet as argued in our Opinion here, there are concerns regarding the consistency of care protocols, because of a number of reasons, as well as management and follow-up clinical practices. Our Opinion is to provide a constructive discussion as well as calling for ACEM to support research to provide evidence-based data. Finally, we provide some recommendations that could be implemented immediately to improve clinical practice for presentations of concussion injuries in EDs.

The value of health service-based research to health service organisations: a qualitative study with senior health service executives.

BACKGROUND: Research evidence has demonstrably improved health care practices and patient outcomes. However, systemic translation of evidence into practice is far from optimal. The reasons are complex, but often because research is not well aligned with health service priorities. The aim of this study was to explore the experiences and perspectives of senior health service executives on two issues: (1) the alignment between local research activity and the needs and priorities of their health services, and (2) the extent to which research is or can be integrated as part of usual health care practice. METHODS: In this qualitative study, semi-structured interviews were conducted with senior health leaders from four large health service organisations that are members of Sydney Health Partners (SHP), one of Australia's nationally accredited research translation centres committed to accelerating the translation of research findings into evidence-based health care. The interviews were conducted between November 2022 and January 2023, and were either audio-recorded and transcribed verbatim or recorded in the interviewer field notes. A thematic analysis of the interview data was conducted by two researchers, using the framework method to identify common themes. RESULTS: Seventeen health executives were interviewed, including chief executives, directors of medical services, nursing, allied health, research, and others in executive leadership roles. Responses to issue (1) included themes on re-balancing curiosity- and priority-driven research; providing more support for research activity within health organisations; and helping health professionals and researchers discuss researchable priorities. Responses to issue (2) included identification of elements considered essential for embedding research in health care; and the need to break down silos between research and health care, as well as within health organisations. CONCLUSIONS: Health service leaders value research but want more research that aligns with their needs and priorities. Discussions with researchers about those priorities may need some facilitation. Making research a more integrated part of health care will require strong and broad executive leadership, resources and infrastructure, and investing in capacity- and capability-building across health clinicians, managers and executive staff.

Patient-driven research priorities for patient-centered measurement.

BACKGROUND: Patient-centred measurement (PCM) emphasizes a holistic approach wherein the voices of patients are reflected in the standardized use of patient-reported outcome and experience measures and are represented throughout the continuum of measurement activities. Given the challenges of routinely integrating patient self-reports into clinical care decisions, the perspectives of all healthcare system stakeholders, especially patients, is necessary to advance the science of PCM. The purpose of the analysis we report on here was to identify patient-driven research priorities for advancing the science of PCM. METHODS: We analyzed data from seven focus groups that were conducted across British Columbia, Canada and that included a total of 73 patients, using qualitative inductive analysis and constant comparative methods. RESULTS: We found that the patients conveyed a desire for PCM to contribute to healthcare decisions, specifically that their individual healthcare needs and related priorities as they see them are always front and centre, guiding all healthcare interactions. The patients' commentaries highlighted intersecting priorities for research on advancing the science of PCM that would help transform care by (1) enhancing the patient-provider relationship, (2) giving voice to patients' stories, (3) addressing inclusivity, (4) ensuring psychological safety, (5) improving healthcare services and systems to better meet patient needs, and (6) bolstering healthcare system accountability. CONCLUSIONS: These priorities provide direction for future research efforts that would be positioned to make progress towards better health, better care, and better use of resources for individuals and for society.

Impact of and research priorities in early onset epilepsy: An investigation of parental concerns.

[Background and aim] Early onset epilepsy is a neurological condition with significant developmental consequences, and presents affected children and families with challenges which pervade many aspects of family life. Whilst the concerns of parents and the impact on quality of life is well documented in qualitative research, little emphasis has been placed on the context of 'early onset', and the implications of these concerns for research priority setting. We aimed to explore parental perspectives regarding concerns and the impact of early onset epilepsy on the child and family, and to identify priorities for future paediatric epilepsy research. [Methods] The Brain development in Early Epilepsy: Parent Priorities (BEE-PP) project employed a mixed methods approach to collect information on parents' experience of having a child diagnosed with early onset epilepsy before 36 months old and aged up to 16 years old. Parents completed an online survey (n = 15) followed by a focus group (n = 5) to explore their main concerns regarding early onset epilepsy, the impact on family life and research priorities. [Results] A thematic analysis of the focus group data generated eight themes related to concerns of parents, the impact on the family and research priorities. The three main concerns identified were the expected trajectory of their child's development, a lack of seizure control following diagnosis and adverse behavioural side effects of medication. Within family life, early onset epilepsy had an impact on sibling autonomy and psychosocial adaptation, poorer parental wellbeing and restricted social and personal activities. The need for clearer information regarding their child's developmental trajectory, and managing the side effects of medication and their interactions with behaviour over time were topics of priority for future epilepsy research. [Interpretation] The impact of early onset epilepsy on the family is pervasive and requires the provision of appropriate healthcare service-led support for families to improve quality of life and children's adjustment to epilepsy. Regular monitoring of the concerns of parents and the impact of the diagnosis would be beneficial for addressing epilepsy-related and psychosocial needs of the wider family throughout their child's development. Implications for future research priority setting with regards to improved clinician-to-parent information sharing and managing the behavioural side effects of medication are discussed.

Patients' and carers' views on research priorities in prehabilitation for cancer surgery.

INTRODUCTION: The views of patients and carers are important for the development of research priorities. This study aimed to determine and compare the top research priorities of cancer patients and carers with those of multidisciplinary clinicians with expertise in prehabilitation. MATERIALS AND METHODS: This cross-sectional study surveyed patients recovering from cancer surgery at a major tertiary hospital in Sydney, Australia, and/or their carers between March and July 2023. Consenting patients and carers were provided a list of research priorities according to clinicians with expertise in prehabilitation, as determined in a recent International Delphi study. Participants were asked to rate the importance of each research priority using a 5-item Likert scale (ranging from 1 = very high research priority to 5 = very low research priority). RESULTS: A total of 101 patients and 50 carers participated in this study. Four areas were identified as research priorities, achieving consensus of highest importance (> 70% rated as "high" or "very high" priority) by patients, carers, and clinical experts. These were "optimal composition of prehabilitation programs" (77% vs. 82% vs. 88%), "effect of prehabilitation on surgical outcomes" (85% vs. 90% vs. 95%), "effect of prehabilitation on functional outcomes" (83% vs. 86% vs. 79%), and "effect of prehabilitation on patient reported outcomes" (78% vs. 84% vs. 79%). Priorities that did not reach consensus of high importance by patients despite reaching consensus of highest importance by experts included "identifying populations most likely to benefit from prehabilitation" (70% vs. 76% vs. 90%) and "defining prehabilitation core outcome measures" (66% vs. 74% vs. 87%). "Prehabilitation during neoadjuvant therapies" reached consensus of high importance by patients but not by experts or carers (81% vs. 68% vs. 69%). CONCLUSION: This study delineated the primary prehabilitation research priorities as determined by patients and carers, against those previously identified by clinicians with expertise in prehabilitation. It is recommended that subsequent high-quality research and resource allocation be directed towards these highlighted areas of importance.

Radiation Adverse Outcome pathways (AOPs): examining priority questions from an international horizon-style exercise.

PURPOSE: The Organisation for Economic Co-operation and Development (OECD) Adverse Outcome Pathway (AOP) Development Programme is being explored in the radiation field, as an overarching framework to identify and prioritize research needs that best support strengthening of radiation risk assessment and risk management strategies. To advance the use of AOPs, an international horizon-style exercise (HSE) was initiated through the Radiation/Chemical AOP Joint Topical Group (JTG) formed by the OECD Nuclear Energy Agency (NEA) High-Level Group on Low Dose Research (HLG-LDR) under the auspices of the Committee on Radiological Protection and Public Health (CRPPH). The intent of the HSE was to identify key research questions for consideration in AOP development that would help to reduce uncertainties in estimating the health risks following exposures to low dose and low dose-rate ionizing radiation. The HSE was conducted in several phases involving the solicitation of relevant questions, a collaborative review of open-ended candidate questions and an elimination exercise that led to the selection of 25 highest priority questions for the stated purpose. These questions were further ranked by over 100 respondents through an international survey. This final set of questions was judged to provide insights into how the OECD's AOP approach can be put into practice to meet the needs of hazard and risk assessors, regulators, and researchers. This paper examines the 25 priority questions in the context of hazard/risk assessment framework for ionizing radiation. CONCLUSION: By addressing the 25 priority questions, it is anticipated that constructed AOPs will have a high level of specificity, making them valuable tools for simplifying and prioritizing complex biological processes for use in developing revised radiation hazard and risk assessment strategies.

Establishing the Top 10 Research Priorities for Adolescent and Young Adult (AYA) Cancer in Canada: A Protocol for a James Lind Alliance Priority Setting Partnership.

Adolescents and young adults (AYAs; 15-39 years) diagnosed with cancer have unique medical and psychosocial needs. These needs could be better addressed through research that is focused on the topics that matter most to them. However, there is currently no patient-oriented research agenda for AYA cancer in Canada. This manuscript describes the early development and project protocol for a priority-setting partnership (PSP) for establishing the top 10 research priorities for AYA cancer in Canada. This project follows the PSP methodology outlined by the James Lind Alliance (JLA) to engage patients, caregivers, and clinicians in research prioritization. The steps of a JLA PSP include establishing a steering group and project partners, gathering uncertainties, data processing and verifying uncertainties, interim priority setting, and a final priority setting workshop. The AYA cancer PSP will result in a top 10 list of research priorities identified by Canadian AYA patients, caregivers, and clinicians that will be published and shared broadly with the research community. The first steering group meeting was held in April 2023, and the project is ongoing. The establishment of a patient-oriented research agenda for AYA cancer will catalyze a long-term and impactful research focus and ultimately improve outcomes for AYA patients with cancer in Canada.

Research priorities of endometriosis patients and supporters in Aotearoa New Zealand.

BACKGROUND: In New Zealand, an estimated 10% of women and people presumed female at birth have endometriosis, a disease characterised by the presence of tissue similar to the lining of the uterus, outside of the uterus. AIMS: The purpose of this study was to characterise the research priorities of New Zealand endometriosis patients and their support networks in alignment with an Australian study. This will allow researchers to be able to ensure their research aligns with closing research gaps prioritised by those who directly experience the impacts of the disease. METHODS AND MATERIALS: There were 1262 responses to an online Qualtrics survey advertised through Endometriosis New Zealand's social media accounts and mailing list to reach endometriosis patients and their support networks. RESULTS: Overall, the highest research priorities for surgically or radiologically confirmed endometriosis patients, clinically suspected endometriosis patients, chronic pelvic pain patients, and their parents, partners, family members and friends were the management and treatment of endometriosis, followed by understanding endometriosis' cause, and improved capacity to diagnose endometriosis earlier. The key differences between the priorities of symptomatic participants and supporters were that symptomatic participants placed a significantly higher priority on understanding the cause of endometriosis, and supporters placed a significantly higher priority on improving the diagnosis of endometriosis. CONCLUSIONS: There is alignment between the ranking of general research priority areas for endometriosis in Australasia, allowing for clear priorities for future research teams to structure their work around patient-centredness.

'Nothing About Us, Without Us': Research Priorities for Autistic Girls, Women and Gender Diverse People in Australia.

Autistic girls, women and gender diverse people have specific needs that are underrepresented in research. Research priorities are often established by funding bodies, researchers, parents, carers and health professionals and may not meet the needs of the diverse Autistic community. This co-produced project aimed to identify what research would benefit the lives of Autistic girls, women and gender diverse people in Australia. We interviewed 47 Autistic girls, women and gender diverse people aged seven and above and obtained feedback from an additional 411 Autistic people through an online survey. Autistic young people identified six key research priorities including (1) better understanding and support at school, (2) understanding our experiences, strengths and challenges, (3) autism specific mental health support, (4) Autistic friendships and relationships, (5) experiences of gender diversity and (6) accommodations to make life easier for us. Eight key research priority areas were identified by Autistic adults including (1) understanding and supporting specific needs in adulthood, (2) experiences of trauma, abuse and sexual violence, (3) supporting mental health and wellbeing, (4) addressing barriers in healthcare, (5) understanding and supporting physical health needs, (6) addressing barriers in education and the workplace, (7) understanding the role of society, embracing neurodiversity and the importance of Autistic identity and (8) co-designing research and supports with Autistic people. We provide a discussion around the importance of focusing on these research priority areas in future autism research in Australia.

Identifying Research Priorities in Limb Reconstruction Surgery in the United Kingdom.

Introduction: Limb reconstruction surgery (LRS) has a wide range of clinical applications within orthopaedic and trauma surgery. We sought a consensus view from limb reconstruction healthcare practitioners across the United Kingdom to help guide research priorities within LRS. Our aim is to guide future clinical research in LRS, and assist healthcare practitioners, clinical academics, and funding bodies in identifying key research priorities to improve patient care. Materials and methods: A modified Delphi approach was used; it involved an initial scoping survey and a 2-round Delphi process to identify the consensus research priorities in both adult and paediatric LRS. Participants were asked to rank approved submitted questions according to perceived importance on a 5-point Likert scale, where 1 represented lowest importance and 5 indicated highest importance. Mean scores were calculated to identify a consensus of the top ten research priorities for adult and paediatric LRS. Results: One hundred and fifteen participants primarily from across the United Kingdom working in LRS contributed to the modified Delphi process. Participants ranked and then re-ranked the presented research topics in terms of perceived importance. This led to the identification of a top ten research priorities in both adult and paediatric LRS, respectively, based on the collective responses of LRS practitioners. The highest-ranked questions in both adult and paediatric practice related to how to best assess and record patient-reported outcome measures (PROMs) in LRS patients. Other priorities included the effectiveness of specialist physiotherapy, the use of patient-focused psychological support, and the use of various operative management strategies for infection and limb length discrepancies. Conclusion: We present a consensus-driven research priority study that outlines the key research topics and themes determined by healthcare professionals within LRS in the United Kingdom. Clinical significance: These questions will assist funding bodies in prioritising where research funding may be best utilised and help drive future improvement in patient care. How to cite this article: British Limb Reconstruction Society Research Collaborative. Identifying Research Priorities in Limb Reconstruction Surgery in the United Kingdom. Strategies Trauma Limb Reconstr 2024;19(1):1-8.

Longer and better lives for patients with atrial fibrillation: the 9th AFNET/EHRA consensus conference.

AIMS: Recent trial data demonstrate beneficial effects of active rhythm management in patients with atrial fibrillation (AF) and support the concept that a low arrhythmia burden is associated with a low risk of AF-related complications. The aim of this document is to summarize the key outcomes of the 9th AFNET/EHRA Consensus Conference of the Atrial Fibrillation NETwork (AFNET) and the European Heart Rhythm Association (EHRA). METHODS AND RESULTS: Eighty-three international experts met in Münster for 2 days in September 2023. Key findings are as follows: (i) Active rhythm management should be part of the default initial treatment for all suitable patients with AF. (ii) Patients with device-detected AF have a low burden of AF and a low risk of stroke. Anticoagulation prevents some strokes and also increases major but non-lethal bleeding. (iii) More research is needed to improve stroke risk prediction in patients with AF, especially in those with a low AF burden. Biomolecules, genetics, and imaging can support this. (iv) The presence of AF should trigger systematic workup and comprehensive treatment of concomitant cardiovascular conditions. (v) Machine learning algorithms have been used to improve detection or likely development of AF. Cooperation between clinicians and data scientists is needed to leverage the potential of data science applications for patients with AF. CONCLUSIONS: Patients with AF and a low arrhythmia burden have a lower risk of stroke and other cardiovascular events than those with a high arrhythmia burden. Combining active rhythm control, anticoagulation, rate control, and therapy of concomitant cardiovascular conditions can improve the lives of patients with AF.

Identifying research priorities for infection prevention and control. A mixed methods study with a convergent design.

Background: Meaningful research creates evidence for Infection Prevention and Control (IPC) practice. Aim: To establish Infection Prevention Society (IPS) members' research priorities to support future research projects. Methods: A mixed methods convergent parallel design incorporating a cross-sectional survey of IPS members (2022-2023), and focus group findings from the IPS Consultative Committee, (October 2022). Quantitative data were analysed using descriptive statistics. Qualitative data were transcribed verbatim, entered into NVivo 12, and analysed using a thematic analysis approach. Findings/Results: 132 IPS members responded to the survey, including 120 (90.9%) nurses. The three most prevalent priorities were: Quality Improvement and Patient Safety (n = 84, 16.1%); IPC Training and Education (n = 77, 14.8%); and IPC Evidence-based Guidelines (n = 76, 14.6%). Analysis of the focus group transcripts identified six emergent themes 'Patient Centred Care', 'Training and Education', 'IPC Role and Identity', 'IPC Leadership', 'IPC is Everyone's Responsibility', and 'Research Activity'. Triangulation of findings demonstrated concordance between quantitative and qualitative findings with Quality Improvement and Patient Safety (QIPS) and Training and Education identified as priority research areas. Discussion: This study highlights the necessity of developing support systems and incorporating research priorities in QIPS, as well as Training and Education. The findings of this study align with the recommended core competencies and components for effective infection prevention and control programs, making them relevant to QIPS initiatives. The outcomes of the study will serve as a valuable resource to guide the IPS Research and Development Committee in delivering practical support to IPS members.

Science Shops as key intermediary structures to respond to the current health research agenda bias: Evidence from the InSPIRES project.

INTRODUCTION: To increase the likelihood of research responding to societal needs, intermediary structures such as Science Shops are being created. Science Shops respond to research needs identified and prioritized through participatory processes involving civil society. However, these are not mainstream structures, and most research needs addressed by the scientific community are not defined by a diversity of stakeholders (including citizens) but are mostly prioritized by researchers and funders. Literature shows this often leads to bias between the research topics investigated and the research needs of other relevant stakeholders. This study analyses how 14 Science Shops contribute to decreasing bias in health research agenda setting. METHODOLOGY: We compare the research priorities identified through participatory processes by the Science Shops, which participated in the European Union-funded project InSPIRES (2017-2021), to the available research addressed in the literature (identified in Web of Science), which we use as a proxy for current research priorities. RESULTS: Science Shop projects contributed to decreasing the existing bias in health research agenda setting: (1) between drug and nondrug treatments and (2) between clinical trials of treatments for illnesses affecting high-income versus middle- and low-income countries, which leads to a lack of local strategies for high disease burdens in nonhigh-income regions. CONCLUSION: This study provides the first evidence of Science Shops' effectiveness in addressing current biases in health research agenda setting. We conclude they could play a key role in shaping local, national and international research policies.

Research priorities in trans health: a Delphi-study.

Purpose: Progress has been made in understanding trans health needs, but research priorities are often set by policy or healthcare professionals without trans input, which may not reflect public needs. Our study sought to identify trans health research priorities in France from both researchers and the trans community. Methods: Expert stakeholders (health and social sciences professionals, trans individuals, and their families) answered a three-round Delphi survey on trans health research priorities. The first round involved an open-ended questionnaire, analyzed qualitatively. In the second round, participants ranked research propositions from round one using a Likert scale. The study's second phase involved a two-hour workshop with experts and trans individuals. Results: 53 participants (32% trans individuals/relatives, 60% health professionals) contributed 217 responses to open-ended questions, leading to 44 research priorities. After the two voting rounds, a total of five proposals reached a strong consensus cut-off and were considered as the main research priorities: evaluation of the effect of puberty blocker use in trans children and adolescents (95%), evaluation of the effect of supporting trans children and adolescents (92%), study of the support systems available for trans youth and their parents (86%), persistence of trans identity around puberty (prevalence, persistent persons characteristics) (86%), and needs assessment survey of the support for adolescents and their families (83%). Thirteen other proposals were considered moderate priorities. Conclusion: The main consensus in our French study concerned research on trans-youth care and support needs. Our results may guide further trans-health research that meets the public's needs and desires.

Shaping research for people living with co-existing mental and physical health conditions: A research priority setting initiative from the United Kingdom.

INTRODUCTION: Those with severe and enduring mental ill health are at greater risk of long-term physical health conditions and have a reduced life expectancy as a result. Multiple factors compound this health inequality, and the need for setting research priorities in this area is highlighted with physical and mental healthcare services being separate, and limited multimorbidity research. METHODS: The aim of this exercise was to work in partnership with healthcare professionals and carers, family, friends and individuals with lived experience of both mental and physical health conditions, to set research priorities to help people with mental health conditions to look after their physical health. The exercise was guided by the James Lind Alliance approach. For this, a steering group was set up, two surveys were completed and a final priority workshop was conducted. RESULTS: This priority setting exercise guided by people's needs and lived experience has produced a set of well-defined research topics. Initially, 555 research questions were suggested in the first survey, which were refined to 54 questions for the second survey. A priority setting workshop was then conducted to get the final 10 priorities. CONCLUSIONS: Taking these topics forward to improve services and treatment for both mental and physical ill health may in turn improve physical health and lessen the reduced life expectancy of those living with mental ill health. PATIENT OR PUBLIC CONTRIBUTION: This work was completed in collaboration with people who have lived experience of mental ill health and physical health conditions, as well as carers, family and friends. Their contribution has been significant for this work from piloting surveys, amending language used and educating the researchers and contributing to this paper. The initial work was completed with a steering group and continued with surveys and workshops.