A comprehensive map of genetic relationships among diagnostic categories based on 48.6 million relative pairs from the Danish genealogy.

For more than half a century, Denmark has maintained population-wide demographic, health care, and socioeconomic registers that provide detailed information on the interaction between all residents and the extensive national social services system. We leverage this resource to reconstruct the genealogy of the entire nation based on all individuals legally residing in Denmark since 1968. We cross-reference 6,691,426 individuals with nationwide health care registers to estimate heritability and genetic correlations of 10 broad diagnostic categories involving all major organs and systems. Heritability estimates for mental disorders were consistently the highest across demographic cohorts (average h2 = 0.406, 95% CI = [0.403, 0.408]), whereas estimates for cancers were the lowest (average h2 = 0.130, 95% CI = [0.125, 0.134]). The average genetic correlation of each of the 10 diagnostic categories with the other nine was highest for gastrointestinal conditions (average rg = 0.567, 95% CI = [0.566, 0.567]) and lowest for urogenital conditions (average rg = 0.386, 95% CI = [0.385, 0.388]). Mental, pulmonary, gastrointestinal, and neurological conditions had similar genetic correlation profiles.

Community engagement tools in HIV/STI prevention research.

PURPOSE OF REVIEW: Community engagement is key to the success of sustainable public health interventions. This review highlights recent published studies that describe the use of community-engaged methods in sexually transmitted infection (STI) prevention research. RECENT FINDINGS: We organized the findings using a socio-ecological model. At the individual level, communities were engaged through participation in formative research, short-term consultations and community advisory board participation, as well as co-creation activities. At the interpersonal level, studies reviewed described peer-led interventions that leverage the influence and guidance of peers, patient-led interventions in the form of patient navigation and notification, as well as those that mobilize social networks and the power of social relationships to promote health. At the organizational and community level, multisectoral, multifacility collaborations between community, government, and academic stakeholders were highlighted. At the policy and population level, communities were engaged through community dialogues to disseminate research findings, as well as in developing strategic frameworks and clinical guidelines. Digital tools have also been leveraged for effective community engagement. SUMMARY: Communities have an effective role to play in STI prevention and can be engaged at multiple levels. Future efforts may consider the use of community engagement tools highlighted in this review, including digital technologies that have the potential to reach more diverse end-users.

Bridges and Mechanisms: Integrating Systems Science Thinking into Implementation Research.

We present a detailed argument for how to integrate, or bridge, systems science thinking and methods with implementation science. We start by showing how fundamental systems science principles of structure, dynamics, information, and utility are relevant for implementation science. Then we examine the need for implementation science to develop and apply richer theories of complex systems. This can be accomplished by emphasizing a causal mechanisms approach. Identifying causal mechanisms focuses on the "cogs and gears" of public health, clinical, and organizational interventions. A mechanisms approach focuses on how a specific strategy will produce the implementation outcome. We show how connecting systems science to implementation science opens new opportunities for examining and addressing social determinants of health and conducting equitable and ethical implementation research. Finally, we present case studies illustrating successful applications of systems science within implementation science in community health policy, tobacco control, health care access, and breast cancer screening.

Radiation therapy of breast cancer in the Nahe Breast Center: first results of an analysis in the context of health services research.

BACKGROUND: The first evaluation of radiotherapy results in patients with breast cancer treated as part of a multimodal oncologic therapy in the Nahe Breast Center is presented. Analysis of the results was performed using an in-practice registry. PATIENTS AND METHODS: From September 2016 to December 2017, 138 patients (median age 62.5 years; range 36-94 years) with breast cancer (right side, n = 67; left side, n = 71) received adjuvant radiation therapy. Of these, 103 patients received gyneco-oncologic care at the Nahe Breast Center, and 35 were referred from outside breast centers. The distribution into stages was as follows: stage I, n = 48; stage II, n = 68; stage III, n = 19; stage IV, n = 3. Neoadjuvant chemotherapy was given to 19 and adjuvant chemotherapy to 50 patients. Endocrine treatment was given to 120 patients. Both 3D conformal (n = 103) and intensity-modulated (n = 35) radiotherapy were performed with a modern linear accelerator. RESULTS: With a median follow-up of 60 months (1-67), local recurrence occurred in 4/138 (2.9%) and distant metastasis in 8/138 (5.8%) patients; 7/138 (5.1%) patients died of their tumors during the follow-up period. The actuarial 5­year local recurrence-free survival of all patients was 97.1%, and the actuarial 5­year overall survival of all patients was 94.9%. We observed no grade 3 or 4 radiogenic side effects. CONCLUSION: The results of radiotherapy for breast carcinoma at the Nahe Breast Center are comparable to published national and international results. In particular, the local recurrence rates in our study, determined absolutely and actuarially, are excellent, and demonstrate the usefulness of radiotherapy.

Making Meaning Matter: an Editor's Perspective on Publishing Qualitative Research.

The term qualitative research refers to a family of primarily non-numeric methods for describing, analyzing, and interpreting the lived experiences of people in their day to day lives. Originally developed to study social problems such as poverty, juvenile delinquency, and race relations, qualitative research methods have been used in the health sciences since the 1960s to better understand the socialization of medical professionals and the culture of medical education and practice. More recently, qualitative research has been employed in health services research to address and improve the quality and safety of care. While quantitative researchers generally ask "what" or "how many" questions, qualitative researchers generally ask, "why" or "how"? Publishing qualitative research comes with a number of challenges, among them, manuscript length, unfamiliarity of reviewers with qualitative traditions, and sample sizes that, by design, are difficult to generalize from. In addition, while there is general agreement about the quality of evidence and types of research designs used in quantitative studies, the same is not yet the case for qualitative and mixed methods research although a variety of useful guidelines have recently appeared. From the perspective of journal editors, we raise and offer guidance on three important questions: (1) Is the study under review suitable for this journal? (2) What is the rationale for using qualitative methods to carry out the research? (3) What are editors/reviewers looking for in a qualitative submission? In unpacking the third question, we describe common strategies editors use and challenges that we have encountered in the abstract, background, methods, results, discussion, and conclusions sections of qualitative submissions we and our colleagues have reviewed.

Research Priorities to Expand Virtual Care Access for Patients in the Veterans Affairs Health Care System.

The rapid expansion of virtual care is driving demand for equitable, high-quality access to technologies that are required to utilize these services. While the Department of Veterans Affairs (VA) is seen as a national leader in the implementation of telehealth, there remain gaps in evidence about the most promising strategies to expand access to virtual care. To address these gaps, in 2022, the VA's Health Services Research and Development service and Office of Connected Care held a "state-of-the-art" (SOTA) conference to develop research priorities for advancing the science, clinical practice, and implementation of virtual care. One workgroup within the SOTA focused on access to virtual care and addressed three questions: (1) Based on the existing evidence about barriers that impede virtual care access in digitally vulnerable populations, what additional research is needed to understand these factors? (2) Based on the existing evidence about digital inclusion strategies, what additional research is needed to identify the most promising strategies? and (3) What additional research beyond barriers and strategies is needed to address disparities in virtual care access? Here, we report on the workgroup's discussions and recommendations for future research to improve and optimize access to virtual care. Effective implementation of these recommendations will require collaboration among VA operational leadership, researchers, Human Factors Engineering experts and front-line clinicians as they develop, implement, and evaluate the spread of virtual care access strategies.

Transportation Justice and Health.

Policy Points The health care sector is increasingly investing in social conditions, including availability of safe, reliable, and adequate transportation, that contribute to improving health. In this paper, we suggest ways to advance the impact of transportation interventions and highlight the limitations of how health services researchers and practitioners currently conceptualize and use transportation. Incorporating a transportation justice framework offers an opportunity to address transportation and mobility needs more comprehensively and equitably within health care research, delivery, and policy.

Fifty Years of Connection: Characterizing the Social Network of a Primary Care Research Organization.

PURPOSE: This study marks the 50th anniversary of NAPCRG (formerly the North American Primary Care Research Group) by examining social connections among members. METHODS: This descriptive social network analysis was conducted via the Program to Analyze, Record, and Track Networks to Enhance Relationships (PARTNER) survey tool. RESULTS: Responses from 906 participants resulted in 1,721 individuals with 5,196 partner relationships. Most relationships (60%) were characterized as having an integrated level of collaboration. Many relationships led to a research paper (58%) or a grant (34%). CONCLUSIONS: This social network analysis of NAPCRG members' relationships described over 5,000 relationships, many producing publications, grants, and perceived advancements in primary care.

Disparities in Unmet Health Care Needs Among US Children During the COVID-19 Pandemic.

PURPOSE: The COVID-19 pandemic disrupted pediatric health care in the United States, and this disruption layered on existing barriers to health care. We sought to characterize disparities in unmet pediatric health care needs during this period. METHODS: We analyzed data from Wave 1 (October through November 2020) and Wave 2 (March through May 2021) of the COVID Experiences Survey, a national longitudinal survey delivered online or via telephone to parents of children aged 5 through 12 years using a probability-based sample representative of the US household population. We examined 3 indicators of unmet pediatric health care needs as outcomes: forgone care and forgone well-child visits during fall 2020 through spring 2021, and no well-child visit in the past year as of spring 2021. Multivariate models examined relationships of child-, parent-, household-, and county-level characteristics with these indicators, adjusting for child's age, sex, and race/ethnicity. RESULTS: On the basis of parent report, 16.3% of children aged 5 through 12 years had forgone care, 10.9% had forgone well-child visits, and 30.1% had no well-child visit in the past year. Adjusted analyses identified disparities in indicators of pediatric health care access by characteristics at the level of the child (eg, race/ethnicity, existing health conditions, mode of school instruction), parent (eg, childcare challenges), household (eg, income), and county (eg, urban-rural classification, availability of primary care physicians). Both child and parent experiences of racism were also associated with specific indicators of unmet health care needs. CONCLUSIONS: Our findings highlight the need for continued research examining unmet health care needs and for continued efforts to optimize the clinical experience to be culturally inclusive.

The "what, why, and how?" of story completion in health services research: a scoping review.

BACKGROUND: The story completion method provides a different way of doing qualitative research. We note the emergent popularity of this method in health-related research, while much remains to be negotiated in terms of best practices for such studies. This scoping review aims to provide a synthesis on how researchers have used the story completion method in health services research. We offer implications for research and practice for further discussion by the scholarly community. METHODS: We used the JBI methodology for scoping reviews. Six databases were searched for published literature till March 1, 2023: Medline, Embase, CINAHL, PsycINFO, SAGE Journals Online databases, and SAGE Research Methods. We included primary studies of any study design using the story completion method in health services research. RESULTS: A total of 17 studies were included. Findings suggest that the story completion method is useful for research on sensitive topics, and affords the use of comparative study designs and large sample sizes which may be difficult with conventional qualitative research methods. More than 80% of included studies used story completion as the sole method. However, the data collected from this method were limited in terms of the inferences that can be drawn; and richness of participant responses may vary widely. Less than 30% of included studies reported piloting of the story stems. Most studies were conducted online and analyzed qualitatively, though the story stem design and sample size varied widely. CONCLUSION: The story completion method, with its attendant affordances for larger sample sizes, comparative study designs, and streamlined data collection is an innovative and useful stand-alone or adjunct qualitative method for health services research.

Developing a community-responsive research model in the healthcare system: a mixed-method study.

BACKGROUND: Responsiveness to the population's non-clinical needs encompasses various dimensions, including responsive research and an educational outreach plan at the community level. This study aims to develop a community-responsive research model in the healthcare system to ensure the connection between community-identified health priorities and research funds, as well as capacity-building efforts. METHODS: A mixed-methods research study was conducted in three main phases, including a comprehensive literature review, a qualitative analysis of an expert panel's points of view, and the developing of a model using the Equation Modeling (SEM) technique. R software version 3.2.4 was used to conduct statistical analysis, considering a significance level of 0.05. RESULTS: Based on the literature review, 41 responsiveness components were identified from sixteen relevant studies conducted between 2000 and 2022. Ten sub-themes in four major themes, including planning, implementation, monitoring and evaluation, and action, were identified through qualitative content analysis. Standardized coefficients revealed that components such as dissemination of results to all stakeholders, research prioritization aligned with community needs, commitment to implement research findings, and collaborative learning had statistically significant effects on the community-responsive research model. CONCLUSION: It is essential to identify community health priorities by following a community-focused, priority-setting process based on the principles of community engagement to develop a community-responsive research model. Afterward, dissemination of research findings to all stakeholders, commitment to apply the obtained results in the real world, and promotion of shared learning among research partners have been proven to facilitate collaborative investigation and mutual understanding between the community and academic partners.

Barriers and facilitators for recruiting and retaining male participants into longitudinal health research: a systematic review.

BACKGROUND: Successfully recruiting male participants to complete a healthcare related study is important for healthcare study completion and to advance our clinical knowledgebase. To date, most research studies have examined the barriers and facilitators of female participants in longitudinal healthcare-related studies with limited information available about the needs of males in longitudinal research. This systematic review examines the unique barriers and facilitators to male recruitment across longitudinal healthcare-related research studies. METHODS: Following PRIMSA guidelines, MEDLINE, Embase, CINAHL and Web of Science databases were systematically searched using the terms recruitment and/or retention, facilitators and/or barriers and longitudinal studies from 1900 to 2023 which contained separate data on males aged 17-59 years. Health studies or interventions were defined longitudinal if they were greater than or equal to 12 weeks in duration with 3 separate data collection visits. RESULTS: Twenty-four articles published from 1976-2023 met the criteria. One-third of the studies had a predominantly male sample and four studies recruited only male participants. Males appear disinterested towards participation in health research, however this lack of enthusiasm can be overcome by clear, non-directive communication, and studies that support the participants interests. Facilitating factors are diverse and may require substantial time from research teams. CONCLUSIONS: Future research should focus on the specific impact of these factors across the spectrum of longitudinal health-related studies. Based on the findings of this systematic review, researchers from longitudinal health-related clinical trials are encouraged to consider male-specific recruitment strategies to ensure successful recruitment and retention in their studies. REGISTRATION: This systemic review is registered with the PROSPERO database (CRD42021254696).

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.

Correlates of ART attrition among adults under antiretroviral therapy in Southern Ethiopia, retrospective cohort study.

High attrition rates from ART are the primary contributors to morbidity, death, hospitalisation, rising transmission rates, treatment failure, rising burden of opportunistic infections (OIs), and the evolution of HIV-virus resistance (HIVDR). In Sub-Saharan Africa, more than two-thirds of ART patients will not receive continuous care. There is little information about the correlates that contribute to attrition from ART services among ART patients in Southern Ethiopia. Hence, this study aims to identify correlates of attrition from antiretroviral therapy services for adults under antiretroviral therapy at Otona Teaching and Referral Hospital, Wolaita Zone, Southern Ethiopia. From 1 January 2013 to 31 December 2017, a retrospective cohort analysis was performed. The pre-determined 328 medical records were chosen using a simple random sampling technique using computer-generated random numbers. Epi Info version 3.5.3 was used to enter and clean the data, which were then exported to STATA version 11 for analysis. The Cox proportional hazards model, both bivariate and multivariable, was used. Variables with p-values less than 0.25 in bivariate analysis were considered candidates for multivariable analysis, and variables with p-values less than 0.05 were deemed statistically important in multivariable analysis. The intensity of the correlation and statistical significance were determined using the CHR, AHR, and 95 per cent confidence intervals. The magnitude of attrition from ART service was 21.60% (95% CI: 17.10, 26.10). The distance between home and hospital is more than five kilometres (AHR:3.84;95% CI: 1.99,7.38), no registered phone number (AHR:2.47;95%CI:1.32,4.09), have not taken isoniazid prophylaxis (AHR:2.23;95%CI:1.30,4.09), alcohol consumption (AHR: 1.77; 95% CI:1.01, 3.12), and had no caregiver (AHR: 2.11; 95% CI:1.23, 3.60) were statistically significant in the Cox proportional hazard model. Distance between home and hospital, phone number registration on follow-up chart, having a history of alcohol consumption, isoniazid prophylaxis provision, and having family support were independent correlates of attrition from antiretroviral treatment services.

Targeting emotion dysregulation in depression: an intervention mapping protocol augmented by participatory action research.

BACKGROUND: Depression is a highly prevalent and often recurrent condition; however, treatment is not always accessible or effective in addressing abnormalities in emotional processing. Given the high prevalence of depression worldwide, identifying and mapping out effective and sustainable interventions is crucial. Emotion dysregulation in depression is not readily amenable to improvement due to the complex, time-dynamic nature of emotion; however, systematic planning frameworks for programs addressing behavioral changes can provide guidelines for the development of a rational intervention that tackles these difficulties. This study proposes an empirical and theoretical art-based emotion regulation (ER) intervention using an integrated approach that combines intervention mapping (IM) with participatory action research (PAR). METHODS: We used the IM protocol to identify strategies and develop an intervention for patients with major depressive disorder (MDD). As applied in this study, IM comprises six steps: (a) determining the need for new treatments and determinants of risk; (b) identifying changeable determinants and assigning specific intervention targets; (c) selecting strategies to improve ER across relevant theories and research disciplines; (d) creating a treatment program and refining it based on consultations with an advisory group; (e) developing the implementation plan and conducting a PAR study to pilot-test it; and (f) planning evaluation strategies and conducting a PAR study for feedback on the initial testing. RESULTS: Following the steps of IM, we developed two frameworks for an art-based ER intervention: an individual and an integrative framework. The programs include four theory- and evidence-based ER strategies aimed mainly at decreasing depressive symptoms and improving ER in patients with MDD. We also developed a plan for evaluating the proposed intervention. Based on our preliminary PAR studies, the intervention was feasible and acceptable for adoption and implementation in primary care settings. CONCLUSION: The application of IM incorporated with PAR has resulted in an intervention for improving ER in depression. While changing behavior is perceived as a challenging and elaborate task, this method can be useful in offering a clear structure for developing rational interventions. Further refinement is necessary through rigorous research.

How flash mobs can be used for data collection in healthcare? A scoping review protocol.

BACKGROUND: Traditional research methods often involve a lengthy process, but the emergence of flash mobs as an innovative data collection method offers the potential to gather substantial data within a short time frame. Flash mobs draw inspiration from the concept of large groups organizing through the internet or mobile devices to perform a prearranged action in public. In healthcare research, flash mobs serve as research organizing method to investigate clinically relevant questions on a large scale within a limited period. AIMS: This study aims to present a study protocol for a scoping review that comprehensively maps the existing literature on the use of flash mobs as a data collection method in healthcare research. METHODS: The review will follow established guidelines and include steps such as identifying the research question, identifying relevant studies, selecting studies, charting the data, and collating and summarizing the results. The review will utilize databases, manual screening of additional sources, and covidence for study selection and data charting. The findings will be summarized using descriptive statistics and a descriptive synthesis of qualitative data. The review protocol has been registered with the Open Science Framework. RESULTS: The results of this scoping review will provide insights into different flash mob designs, motivations, and the data collection process, contributing to the development of high-quality flash mob data collections in healthcare research.

How can machine learning predict cholera: insights from experiments and design science for action research.

Cholera is a leading cause of mortality in Nigeria. The two most significant predictors of cholera are a lack of access to clean water and poor sanitary conditions. Other factors such as natural disasters, illiteracy, and internal conflicts that drive people to seek sanctuary in refugee camps may contribute to the spread of cholera in Nigeria. The aim of this research is to develop a cholera outbreak risk prediction (CORP) model using machine learning tools and data science. In this study, we developed a CORP model using design science perspectives and machine learning to detect cholera outbreaks in Nigeria. Nonnegative matrix factorization (NMF) was used for dimensionality reduction, and synthetic minority oversampling technique (SMOTE) was used for data balancing. Outliers were detected using density-based spatial clustering of applications with noise (DBSCAN) were removed improving the overall performance of the model, and the extreme-gradient boost algorithm was used for prediction. The findings revealed that the CORP model outcomes resulted in the best accuracy of 99.62%, Matthews's correlation coefficient of 0.976, and area under the curve of 99.2%, which were improved compared with the previous findings. The developed model can be helpful to healthcare providers in predicting possible cholera outbreaks.

What Do We Know About Sharing Power in Co-Production in Mental Health Research? A Systematic Review and Thematic Synthesis.

BACKGROUND: Guidance on co-production between researchers and people with lived experience was published in 2018 by the National Institute for Health and Care Research (NIHR) advisory group, previously known as INVOLVE. This guidance described sharing power as a key principle within co-production. Authentic sharing of power within co-produced mental health research does not always occur however and remains a challenge to achieve within many projects. OBJECTIVES: To explore what has been learned about the sharing of power in co-production within mental health research since the publication of these guidelines, by synthesising qualitative literature relating to power within co-produced mental health research. METHODS: We carried out a systematic review with thematic synthesis. We searched CINHAL, Embase and PubMed databases to identify qualitative or mixed-method studies relating to power within co-produced mental health research. Studies were independently screened by two reviewers for inclusion and appraised using the Critical Appraisal Skills Programme tool (CASP) for qualitative research. RESULTS: We identified nine papers that met the criteria for inclusion and were included in the synthesis. Three themes were generated: (1) Battling to share power against a more powerful system, (2) Empowerment through relationships and (3) The journey is turbulent, but it is not supposed to be smooth. CONCLUSIONS: Results highlight that power is pervasive, especially within the hierarchical systems research is often conducted within. Sharing power within co-produced mental health research is an ongoing complex process that is not intended to be easy. Respectful trusting relationships can help facilitate power sharing. However, ultimately meaningful change needs to come from research funders, universities and NHS providers. PATIENT OR PUBLIC CONTRIBUTION: The study authors include a lived experience researcher who contributed to the review design, analysis and write-up.

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.

What really is nontokenistic fully inclusive patient and public involvement/engagement in research?

Patient and public involvement and engagement (PPIE) is critically important in healthcare research. A useful starting point for researchers to understand the scope of PPIE is to review the definition from the National Institute for Health and Care Research (NIHR) as, 'research being carried out "with" or "by" members of the public rather than "to", "about" or "for" them'. PPIE does not refer to participation in research, but to actively shaping its direction. The 'Effectiveness of a decision support tool to optimise community-based tailored management of sleep for people living with dementia or mild cognitive impairment (TIMES)' study is funded through the NIHR programme grant for applied research. TIMES has thoroughly embraced PPIE by ensuring the person's voice is heard, understood, and valued. This editorial showcases how the TIMES project maximised inclusivity, and we share our experiences and top tips for other researchers. We base our reflections on the six key UK standards for public involvement; Inclusive Opportunities, Working Together, Support and Learning, Communications, Impact and Governance. We present our work, which had been co-led by our PPIE leads, academics and partners including, together in dementia everyday, Innovations in Dementia, The UK Network of Dementia Voices (Dementia Engagement & Empowerment Project) and Liverpool Chinese Wellbeing. We have a Lived Experience Advisory Forum on Sleep, which includes people with dementia, family carers, representatives of the South Asian Community and the Chinese community.