Art, science and inclusion: multisensory Sciart of immunology for blind, low-vision and diverse-needs audiences.

Art is a powerful tool for conveying scientific discovery. Despite the perceived gap between art and science, as highlighted by CP Snow and others, examples of art communicating science can be found in the ancient world, the Renaissance and contemporary data visualization, demonstrating an enduring and historic connection. However, much of science relies on visual elements, excluding those with blindness, low vision and diverse needs, resulting in their low representation in STEM discourse. This paper introduces a novel science and art collaboration in the form of an exhibition program exploring the concepts of Immunology and Biomedicine to blind and vision-impaired audiences, capitalizing on the lived experience of a legally blind artist. Employing multisensory design, art and co-creation methodologies, it transcends traditional vision-based science communication, showcasing the potential for multisensory art to bridge the gap at the intersection of science and inclusion.

Making sense together: dance improvisation as a framework for a collaborative interdisciplinary learning processes.

This editorial outlines the outcome of an interdisciplinary session on collective sense-making through dance improvisation, which took place during the 'Neural and Social Bases of Creative Movement' workshop. We argue that joint improvisation practices place the scientist in a privileged position to reveal the nature of cognitive and creative behaviors.

Constructing a clinical radiographic knee osteoarthritis database using artificial intelligence tools with limited human labor: A proof of principle.

OBJECTIVE: To create a scalable and feasible retrospective consecutive knee osteoarthritis (OA) radiographic database with limited human labor using commercial and custom-built artificial intelligence (AI) tools. METHODS: We applied four AI tools, two commercially available and two custom-built tools, to analyze 6 years of clinical consecutive knee radiographs from patients aged 35-79 at the University of Copenhagen Hospital, Bispebjerg-Frederiksberg Hospital, Denmark. The tools provided Kellgren-Lawrence (KL) grades, joint space widths, patella osteophyte detection, radiographic view detection, knee joint implant detection, and radiographic marker detection. RESULTS: In total, 25,778 knee radiographs from 8575 patients were included in the database after excluding inapplicable radiographs, and 92.5% of the knees had a complete OA dataset. Using the four AI tools, we saved about 800 hours of radiologist reading time and only manually reviewed 16.0% of the images in the database. CONCLUSIONS: This study shows that clinical knee OA databases can be built using AI with limited human reading time for uniform grading and measurements. The concept is scalable temporally and across geographic regions and could help diversify further OA research by efficiently including radiographic knee OA data from different populations globally. We can prevent data dredging and overfitting OA theories on existing trite cohorts by including various gene pools and continuous expansion of new clinical cohorts. Furthermore, the suggested tools and applied approaches provide an ability to retest previous hypotheses and test new hypotheses on real-life clinical data with current disease prevalence and trends.

Cost-effectiveness analysis of endovascular vs surgical arteriovenous fistula creation in the United States.

OBJECTIVE: In the United States, an estimated $2.8 billion annually is spent on vascular access and its complications. Endovascular arteriovenous fistula (endoAVF) creation is a novel, minimally invasive alternative to traditional surgical AV fistula (sAVF) creation in ≤60% of patients. Although cost effective in single-payer systems, the clinical and financial impact of endoAVF in the United States remains uncertain. METHODS: We constructed a decision tree followed by a probabilistic cohort state-transition model to study the cost effectiveness of endoAVF vs sAVF creation. We conducted a systematic review to obtain input parameters including technical success, maturation, patency, and utility values. We derived costs from the Medicare 2022 fee schedule and from the literature. We used a 5-year time horizon, an annual discount rate of 3% for costs and utilities (measured in quality-adjusted life-years [QALYs]), and the common willingness-to-pay threshold of $50,000. One-way and Monte Carlo probabilistic sensitivity analyses were performed varying technical success, patency, reintervention, cost, and utility parameters. RESULTS: In the base-case scenario, endoAVF ($30,129 average per-person costs, 2.19 QALYs gained, 65% patent at 5 years) was not cost effective compared with sAVF ($12.987 average per-person costs, 2.11 QALYs gained, 66% patent at 5 years), generating an incremental cost-effectiveness ratio of $227,504 per QALY gained. In one-way sensitivity analyses, endoAVF becomes cost effective when the initial cost of sAVF creation exceeds endoAVF by ≥$600 (eg, if endoAVF creation costs ≤$3000 relative to the base-case sAVF cost of $3600), the additional QALYs gained from endoAVF exceeds 0.12 QALYs/year (eg, 0.81 QALYs gained/year from endoAVF compared with base-case sAVF 0.69 QALYs/year), the endoAVF maturation rate is >90% (base case 78%), or the sAVF maturation rate is <65% (base case 78%). Probabilistic sensitivity analysis demonstrated that sAVF remained the optimal strategy in 71% of iterations. CONCLUSIONS: EndoAVF is not cost effective compared with sAVF when modeling 5-year outcomes. The main driver of sAVF remaining cost effective is the four times higher up-front cost for endoAVF creation, as well as a relatively low additional increase in quality of life for endoAVF. It will be important to establish how the endoAVF learning curve contributes to upfront costs and, given the annual cost attributed to vascular access nationally, a randomized controlled trial is warranted.

Improving student diet and food security in higher education using participatory and co-creation approaches: a systematic review.

BACKGROUND: Higher education students are an important target group for public health nutrition interventions. When designing tailored and contextually relevant interventions, participatory and co-creation approaches are increasingly recognized as promising but their use and effectiveness has not been assessed in this type of population. We systematically reviewed interventions aiming to improve dietary quality and/or food security in higher education settings with the aims 1) to identify and describe their participatory and co-creation approaches and 2) to compare the effectiveness of interventions using or not using participatory and co-creation approaches. METHODS: Our search in PubMed, Google Scholar, Web of Science, EMBASE was performed in January 2023 and yielded 3658 unique records, out of which 42 articles (66 interventions) were included. Effectiveness of interventions was assessed at the individual level (longitudinal evaluations) or at the group level (repeated cross-sectional evaluations). A five-level classification was used to describe a continuum of engagement from students and other partners in the intervention design and implementation: no participation (level one), consultation, co-production, co-design and co-creation (levels two to five). To synthetize effectiveness, comparisons were made between studies without participation (level one) or with participation (levels two-five). RESULTS: Ten (24%) out of 42 studies used a participatory and co-creation approach (levels two-five). Studies using a participatory and co-creation approach reported a positive finding on individual-level outcome (i.e. overall diet quality or food group intake or food security) in 5/13 (38%) intervention arms (vs 13/31 or 42% for those without participation). Studies using a participatory and co-creation approach reported a positive finding on group-level outcomes (i.e. food choices in campus food outlets) in 4/7 (57%) (vs 8/23 or 35% in those without participation). CONCLUSIONS: Participatory and co-creation approaches may improve the effectiveness of nutrition interventions in higher education settings but the level of evidence remains very limited. More research is warranted to identify best co-creation practices when designing, implementing and evaluating nutritional interventions in the higher education setting. TRIAL REGISTRATION: PROSPERO registration number CRD42023393004.

Aligning the planning, development, and implementation of complex interventions to local contexts with an equity focus: application of the PRISM/RE-AIM Framework.

For the fields of implementation science and health equity, understanding and being responsive to local contexts is of utmost importance to better inform the development, implementation, and evaluation of healthcare and public health interventions to increase their uptake and sustainment. Contexts are multi-level and include political, historical, economic, and social factors that influence health, as well as organizational characteristics, reflecting the richness of members' views, resources, values, and needs. Poor alignment between solutions and those contextual characteristics could have an impact on inequities. The PRISM (Practical Robust Implementation and Sustainability Model) is a context-based implementation science framework that incorporates RE-AIM outcomes (Reach, Effectiveness, Adoption, Implementation, Maintenance) and offers guidance to researchers, practitioners, and their patient and community partners on how to conceptualize, assess, and address contextual domains with a focus on health equity. Drawing from systems thinking, participatory engagement, and health equity principles, this commentary expands on previous work to 1) offer a novel perspective on how to align an intervention's core functions and forms with the PRISM's contextual domains, and 2) foster an ongoing and iterative engagement process with diverse partners throughout the research and practice process using a co-creation approach. We recommend intervention-to-context alignment through iterative cycles. To that end, we present the RE-AIM Framework's 'outcomes cascade' to illustrate touch points of opportunity and gaps within and across each of the five RE-AIM outcomes to illustrate 'where things go wrong'. We present a case study to illustrate and offer recommendations for research and practice efforts to increase contextual responsiveness, and enhance alignment with context before, during, and after implementation efforts and to ensure equity is being addressed. We strive to make a conceptual contribution to advance the field of pragmatic research and implementation of evidence-based practices through the application of the contextually-based PRISM framework with a focus on health equity.

Balloon neck-plasty to create a wide-necked aneurysm in the elastase-induced rabbit model.

PURPOSE: The elastase-induced aneurysm (EIA) model in rabbits has been proposed for translational research; however, the adjustment of aneurysm neck size remains challenging. In this study, the technical feasibility and safety of balloon neck-plasty to create a wide-necked aneurysm in rabbit EIA model were investigated. METHODS: Male New Zealand White rabbits (N = 15) were randomly assigned to three groups: group A, EIA creation without neck-plasty; group B, neck-plasty immediately after EIA creation; group C, neck-plasty 4 weeks after EIA creation. The diameter of balloon used for neck-plasty was determined 1 mm larger than origin carotid artery diameter. All rabbits were euthanized 4 weeks after their final surgery. Aneurysm neck, height, dome-to-neck (D/N) ratio, and histologic parameters were compared among the groups. RESULTS: Aneurysm creation was technically successful in 14 out of 15 rabbits (93.3%), with one rabbit experiencing mortality due to an adverse anesthetic event during the surgery. Saccular and wide-necked aneurysms were successfully created in all rabbits. Aneurysm neck was significantly greater in groups B and C compared to group A (all P < .05). D/N ratio was significantly lower in groups B and C compared to group A (all P < .05). Additionally, tunica media thickness, vessel area, and luminal area were significantly greater in groups B and C compared to group A (all P < .05). These variables were found to be significantly greater in group B compared to group C (all P < .05). CONCLUSION: The creation of a wide-necked aneurysm using balloon neck-plasty after elastase induction in rabbits has been determined to be technically feasible and safe.

Co-creating a yoga program for women diagnosed with gynecologic cancer: a consensus study.

PURPOSE: Yoga may be uniquely suited to address bio-psycho-social concerns among adults with gynecologic cancer because it can be tailored to individuals' needs and can help shift focus inward towards self-reflection, body appreciation, and gratitude. This study describes the collaborative process guided by the Knowledge-to-Action framework used to develop a yoga program for adults diagnosed with gynecologic cancer and inform a feasibility trial. METHODS: In 3 collaborative phases, yoga instructors and women diagnosed with gynecologic cancer formulated recommendations for a yoga program and evaluated the co-created program. RESULTS: The program proposed is 12 weeks in length and offers two 60-min group-based Hatha yoga classes/week to five to seven participants/class, online or in person, with optional supplemental features. Overall, participants deemed the co-created program and instructor guidebook to be reflective of their needs and preferences, though they provided feedback to refine the compatibility, performability, accessibility, risk precautions, and value of the program as well as the instructor guidebook. CONCLUSION: The feasibility, acceptability, and benefits of the program are being assessed in an ongoing feasibility trial. If deemed feasible and acceptable, and the potential for enhancing patient-reported outcomes is observed, further investigation will focus on larger-scale trials to determine its value for broader implementation.

Implementing co-created citizen science in five environmental epidemiological studies in the CitieS-Health project.

BACKGROUND AND AIM: Scientists and scientific institutions are adopting more extensive participatory models, hoping to revisit the existing relationship between science and society. Though citizen science has become more common in environmental monitoring, it is seldom utilized in environmental epidemiology. In the CitieS-Health project, we co-created epidemiological studies with citizens in five European countries. The aim of this paper is to share our experiences and impart methodological insight into the application of co-created citizen science strategies in environmental epidemiology. METHODS: We applied the CitieS-Health framework, involving citizens in all the phases of the studies: identifying research questions, designing research protocols, collecting data, analysing data, interpreting data, formulating conclusions, authoring scientific articles and communicating the results to diverse audiences. These epidemiological studies, conducted in specific areas in Italy, Lithuania, the Netherlands, Slovenia and Spain, covered diverse local environmental issues and health effects ranging from air pollution and mental health to industrial pollution and kidney disease. RESULTS: Together with citizens, we successfully conducted environmental epidemiological studies that generated new scientific knowledge reflecting the concerns and knowledge of citizens. Citizens contributed in all the research activities, including activities beyond formulating the research questions, though the researchers initiated several design discussions and conducted time-consuming and complex tasks (e.g. data analysis, measurement of specific exposures and health outcomes). The challenges we encountered were engaging effectively with citizens throughout the study, harmonizing citizens' knowledge and values with the academics' expertise, managing civic expectations, making complex concepts understandable to citizens and representativeness of participating citizens. The co-created studies were able to empower citizens to address local health concerns by sharing and using scientific knowledge generated from studies. CONCLUSIONS: Integration of co-created citizen science in environmental epidemiology is feasible and has the potential to improve the quality of research whilst promoting civic trust in research and results.

Citizen science in environmental health research: A comparison with conventional approaches and creation of a guidance tool issued from the LILAS initiative.

CONTEXT: Public interest for citizen science (CS) in environmental health is growing. The goals of environmental health research projects are diverse, as are the methods used to reach these goals. Opportunities for greater implication of the civil society and related challenges differ at each step of such projects. These methodological aspects need to be widely shared and understood by all stakeholders. The LILAS initiative (acronym for "application of citizen science approaches such as LIving LAbS to research on environmental exposures and chronic risks") aimed to 1) favor a mutual understanding of the main issues and research methods in environmental health, of their stakes for different actors, but also of the requirements, strengths and limitations of these methods and to 2) identify expected benefits and points of attention related to stronger degrees of participation as part of environmental health research projects. METHODS: The LILAS initiative gathered institutional researchers, academics and civil society representatives interested in environmental exposures. Five meetings allowed to collectively identify different types of environmental health research studies and reflect about the benefits, limitations, and methodological issues related to the introduction of growing citizen participation as part of such studies. An analytic table matrix summarizing these aspects was co-created and filled by participants, as a tool devoted to help stakeholders with the definition of future CS research projects in environmental health. RESULTS: For different fields of research (e.g.: studies for assessment of environmental exposures, interventions on these exposures, quantitative risk assessment, epidemiological studies), the matrix lists expected benefits for various stakeholders, the fundamental principles of research methods and related practical constraints, but also advantages and limitations related to the use of CS or conventional research approaches. CONCLUSION: The LILAS initiative allowed to develop a tool which provides consolidated grounds for the co-creation of research projects on environmental exposures involving CS.

Ambient volatile organic compounds in the Seoul metropolitan area of South Korea: Chemical reactivity, risks and source apportionment.

The chemical reactivity, contribution of emission sources, and risk assessment of volatile organic compounds (VOCs) in the atmosphere of the Seoul metropolitan area (SMA) were analyzed. Datasets collected from 6 photochemical assessment monitoring stations (PAMS) of SMA from 2018 to 2021 were used. Alkenes and aromatics contributed significantly to ozone formation relative to the emission concentrations, and aromatics accounted for most of the secondary organic aerosols (SOA) formation in the SMA. The contributions of ozone and SOA formation were found to be notably higher at measurement stations in residential areas such as Guwol (GW) and Sosabon (SS) compared to other measurement stations. From the results of an emission source analysis, it was confirmed that anthropogenic sources such as combustion sources, vehicle exhaust, fuel evaporation, and solvent use had a significant effect at all measurement stations. Assessing the health risk, non-carcinogenic compounds were at acceptable level at all measurement stations. On the other hand, carcinogenic compounds were approaching risk level (10-4), thereby demanding immediate attention. The level of exposure to carcinogenic compounds increased by age group, and male was more vulnerable than female. It was found that SS had the highest level of exposure to carcinogens in the atmosphere of the population ages 60 or older. The health threat of the SMA population is expected due to direct exposure from inhalation of ambient toxic compounds and indirect exposure from ozone and PM2.5 formations through oxidation of VOCs. This study emphasizes the importance of addressing specific emission sources within the metropolitan area and developing comprehensive regional strategies to mitigate VOCs.

Pediatric stoma in Zambia: Current ethical challenges and advancement of public policy.

INTRODUCTION: Pediatric ostomy creation is becoming increasingly prevalent in Sub-Saharan Africa (SSA). The procedure is associated with both physical and ethical challenges for patients, their families, and medical providers. ETHICAL DISCUSSION: Counseling parents of children in need of ostomy creation must address each of their trepidations while seeking to promote the ethical tenets of beneficence, non-maleficence, autonomy, quality of life, and justice. CONCLUSION: As pediatric surgical care in SSA continues to progress, efforts to ameliorate challenges to providing holistic patient-centric care must also progress. This manuscript outlines ethical dilemmas associated with pediatric ostomy care in SSA and lists efforts and initiatives seeking to address them.

Feasibility, acceptability and preliminary evaluation of a user co-facilitated psychoeducational programme: a feasibility proof-of-concept randomised control trial.

BACKGROUND: Mental health settings are increasingly using co-facilitation of educational group interventions in collaboration with patient partners and service users. However, despite promising results, limited information is available regarding the feasibility and satisfaction levels of these programmes among adults newly diagnosed with attention-deficit hyperactivity/impulsivity disorder (ADHD). Hence, this study aimed to determine the feasibility, acceptability, and preliminary effects of a user co-facilitated psychoeducational group programme for adults diagnosed with ADHD. METHODS: This feasibility proof-of-concept randomised controlled trial recruited outpatients from a Norwegian community mental health centre. Outpatients randomised to the intervention group (IG) received a psychoeducational programme supplementing Treatment As Usual (TAU), while the control group received TAU. Feasibility was determined by the acceptance rate, adherence rate, and dropout rate. Acceptability was measured with the Client Satisfaction Questionnaire and a 3-item scale measuring satisfaction with the received information. To test the preliminary effects, self-efficacy, symptom severity, and quality of life were measured at baseline and pre- and post-intervention. RESULTS: Feasibility was demonstrated; most of the patients were willing to enrol, participants attended 82% of the psychoeducational programme, and only 13% dropped out of the study. The between-group analyses revealed that the IG reported significantly greater mean satisfaction than the CG. Moreover, the intervention group was more satisfied with the information they received during the psychoeducational programme. Concerning the preliminary effects, the linear mixed model showed improvement in quality of life (the subscale relationship); however, other patient-reported outcomes did not show improvements. CONCLUSIONS: This proof-of-concept randomised controlled trial supports the feasibility and acceptability of the user co-facilitated psychoeducational programme for patients newly diagnosed with ADHD in an outpatient setting. While preliminary findings indicate promise in enhancing patient-reported outcomes, a larger study is warranted to assess the intervention's effectiveness rigorously. TRIAL REGISTRATION: NCT03425, 09/11/2017.

Conducting co-creation for public health in low and middle-income countries: a systematic review and key informant perspectives on implementation barriers and facilitators.

BACKGROUND: There has been an increase in the use of co-creation for public health because of its claimed potential to increase an intervention's impact, spark change and co-create knowledge. Still, little is reported on its use in low-and-middle-income countries (LMICs). This study offers a comprehensive overview of co-creation used in public-health-related interventions, including the interventions' characteristics, and reported implementation barriers and facilitators. METHODS: We conducted a systematic review within the Scopus and PubMed databases, a Google Scholar search, and a manual search in two grey literature databases related to participatory research. We further conducted eight interviews with first authors, randomly selected from included studies, to validate and enrich the systematic review findings. RESULTS: Through our review, we identified a total of twenty-two studies conducted in twenty-four LMIC countries. Majority of the interventions were designed directly within the LMIC setting. Aside from one, all studies were published between 2019 and 2023. Most studies adopted a co-creation approach, while some reported on the use of co-production, co-design, and co-development, combined either with community-based participatory research, participatory action research or citizen science. Among the most reported implementation barriers, we found the challenge of understanding and accounting for systemic conditions, such as the individual's socioeconomic status and concerns related to funding constraints and length of the process. Several studies described the importance of creating a safe space, relying on local resources, and involving existing stakeholders in the process from the development stage throughout, including future and potential implementors. High relevance was also given to the performance of a contextual and/or needs assessment and careful tailoring of strategies and methods. CONCLUSION: This study provides a systematic overview of previously conducted studies and of reported implementation barriers and facilitators. It identifies implementation barriers such as the setting's systemic conditions, the socioeconomic status and funding constrains along with facilitators such as the involvement of local stakeholders and future implementors throughout, the tailoring of the process to the population of interest and participants and contextual assessment. By incorporating review and interview findings, the study aims to provide practical insights and recommendations for guiding future research and policy.

How doctors can lead the way in their communities: Co-creation, the Indian community and organ donation registration.

BACKGROUND AND AIMS: Transplant success rates can increase when organs and tissues are matched within ethnic communities, but how well are the processes around organ donation understood by discrete ethnic communities in Australia? We investigated this in relation to one ethnic group, the Australian-Indian community in Sydney. METHODS: A culturally appropriate survey and dissemination strategy was co-created with Indian community members through an Advisory Panel. Items were informed by a thematic analysis of cultural beliefs shared through the advisory panel discussions and measured awareness and practices associated with organ donation and transplantation and beliefs about organ donation and registration. Donation information was provided at the end. RESULTS: Two hundred and thirty-eight participants completed the survey. Hinduism along with Tamil and Gujarati were the most frequently identified religious and cultural backgrounds. The processes around organ donation were not well known, and Australian Organ Donor Register registration rates were below the national average. Principal component analysis revealed positive, social, medical trust, concerns, and cardiac and brain death belief factors. Doctors played a key role in generating trust in the donation system, decisions about organ donation were embedded in family and community, and family discussion was related to increased registration. Registered participants reported higher scores on medical trust beliefs, which also predicted family discussion. CONCLUSION: The information needed to understand the process of organ donation and registration in Australia is not embedded in this community, highlighting the need for programmes to be tailored to each culturally diverse community rather than culturally diverse communites in general. Doctors and the advisory panels are pivotal in this process.

A longitudinal study combining the Double Diamond framework and Behavior Change Wheel to co-create a sedentary behavior intervention in police control rooms.

BACKGROUND: Police work can be sedentary and stressful, negatively impacting health and wellbeing. In a novel co-creation approach, we used the Behavior Change Wheel (BCW) and Double Diamond (DD) design framework to guide the collaborative design and development of a sedentary behavior intervention in the control rooms of two British police forces. METHODS: Multiple stakeholders participated in four phases of research. In Phase 1, a literature review, focus groups (n = 20) and interviews (n = 10) were conducted to 'discover' the relationship between physical activity and wellbeing in the police. In Phase 2, a steering group consolidated Phase 1 findings to 'define' a specific behavior for intervention. Phases 3 and 4 'developed' the intervention across six workshops with control room workers and six steering group workshops. RESULTS: The co-creation process identified contextual sedentary behavior as the target behavior, driven by behavioral regulation, social influence and social norms. The sedentary behavior intervention targeted these drivers and aimed to engage control room workers in short bursts of physical activity throughout their shifts. Key intervention features targeted involvement of staff in decision-making and embedding physical activity into work practices. CONCLUSIONS: The BCW and DD can be combined to co-create evidence-based and participant-informed interventions and translate science into action.

The Dilemmas and Opportunities of Co-Creating Health Interventions to Fit Local Contexts: An Ethnographic Study on the Adaptation of Clinical Guidelines in Tanzania.

INTRODUCTION: Healthcare providers' role in co-creating health interventions and implementation strategies has evolved significantly, and yet, there is little documentation of this from low-resource settings. This study aims to share the dilemmas of engaging healthcare providers in co-creating locally adapted clinical guidelines for maternity facilities in Dar es Salaam, Tanzania, and strategies used to address them. METHODS: An ethnographic study explored the co-creation of locally adapted clinical guidelines for childbirth care within five maternity facilities in Dar es Salaam. Participant observations were conducted during 11 co-creation workshops. Six in-depth interviews explored participant experiences. Data were analyzed using Attride-Stirling's thematic network analysis framework. RESULTS: The analysis revealed four themes representing dilemmas in the co-creation process and strategies to improve co-creation: (i) navigating diverse contexts: adapting a single set of guidelines to various, diverse facilities was challenging; this was addressed through engaging in dialogue and flexibility while adjusting care practices. (ii) Competing knowledge systems and sources: differing knowledge sources between researchers and healthcare providers challenged discussions on recommended practices. However, validating scientific recommendations with practical care experience in this context helped bridge this gap. (iii) Fostering meaningful participation: participation was time-consuming for some. However, early stakeholder engagement and facility-led participant selection facilitated the meaningful involvement of healthcare providers. (iv) Power imbalances: power dynamics influenced the co-creation process; involving stakeholders in planning and co-facilitating workshops helped mitigate these imbalances and encourage more equal participation. CONCLUSION: Navigating contextual variation, differences in knowledge systems, meaningful participation and power dynamics were key challenges in the co-creation process. However, reflexivity, open and honest dialogue with stakeholders and early engagement enhanced the co-creation process. Co-creating locally adapted clinical guidelines with frontline healthcare workers and scientific experts is essential for feasibility and safety. Further research is needed to explore context specificity, decision-making and the efficacy of co-creation in low-resource settings. PATIENT OR PUBLIC CONTRIBUTION: Healthcare providers and health managers from five maternity facilities who participated in the co-creation process were actively involved in this study by providing their consent to be interviewed about their experiences of participation. CLINICAL TRIAL REGISTRATION: This study is a substudy within the PartoMa project. PartoMa is a registered clinical trial with the trial registration number NCT04685668. PartoMa's date of initial trial registration is 28 December 2020.

Operationalizing the Consolidated Framework for Implementation Research to build and support the lived experience workforce in direct health service provision.

BACKGROUND: The involvement of people with lived experience (LEX) workers in the development, design, and delivery of integrated health services seeks to improve service user engagement and health outcomes and reduce healthcare gaps. Yet, LEX workers report feeling undervalued and having limited influence on service delivery. There is a need for systematic improvements in how LEX workforces are engaged and supported to ensure the LEX workforce can fully contribute to integrated systems of care. OBJECTIVE: This study aimed to operationalize the Consolidated Framework for Implementation Research (CFIR) using a rigorous scoping review methodology and co-creation process, so it could be used by health services seeking to build and strengthen their LEX workforce. SEARCH STRATEGY: A systematic literature search of four databases was undertaken to identify peer-reviewed studies published between 2016 and 2022 providing evidence of the inclusion of LEX workers in direct health service provision. DATA EXTRACTION AND SYNTHESIS: A descriptive-analytical method was used to map current evidence of LEX workers onto the CFIR. Then, co-creation sessions with LEX workers (n = 4) and their counterparts-nonpeer workers (n = 2)-further clarified the structural policies and strategies that allow people with LEX to actively participate in the provision and enhancement of integrated health service delivery. MAIN RESULTS: Essential components underpinning the successful integration of LEX roles included: the capacity to engage in a co-creation process with individuals with LEX before the implementation of the role or intervention; and enhanced representation of LEX across organizational structures. DISCUSSION AND CONCLUSION: The adapted CFIR for LEX workers (CFIR-LEX) that was developed as a result of this work clarifies contextual components that support the successful integration of LEX roles into the development, design, and delivery of integrated health services. Further work must be done to operationalize the framework in a local context and to better understand the ongoing application of the framework in a health setting. PATIENT OR PUBLIC CONTRIBUTION: People with LEX were involved in the operationalization of the CFIR, including contributing their expertise to the domain adaptations that were relevant to the LEX workforce.

The Perspectives of Healthcare Professionals and Managers on Patient Involvement in Care Pathway Development: A Discourse Analysis.

BACKGROUND: The WHO advocates patient and public involvement as an ethical imperative, due to the value of the lived experience of patients. A deeper understanding of the shared meanings and underlying beliefs of healthcare professionals and managers for and against including patients in care pathway development. OBJECTIVE: To explore the considerations of healthcare professionals and managers on the involvement of patients and public in care pathway development. METHODS: In a medical rehabilitation centre we conducted a single case study that was part of a 2-year action research programme on blended care pathway development. Following 14 semistructured interviews with healthcare professionals and managers, we analysed their discourses on the value of patient involvement as well as the potential threats and opportunities. RESULTS: We identified four discourses. Patient as expert frames involvement as relevant, as adding new perspectives and as required to fully understand the patient's needs. Skills and representation is based on the construct that obtaining valuable insights from patients requires certain skills and competences. Self-protection focusses on personal, interprofessional objections to patient involvement. Professional knows best reveals expertise-related reasons for avoiding or postponing involvement. CONCLUSION: These discourses explain why patient and public involvement in care pathway development is sometimes postponed, limited in scope and level of participation, and/or avoided. The following strategies might minimise the paralysing effect of these discourses: strengthen the capabilities of all stakeholders involved; use a mix of complementary techniques to gain involvement in distinct phases of care pathway development; and create/facilitate a safe environment. Put together, these strategies would foster ongoing, reciprocal learning that could enhance patient involvement. PATIENT OR PUBLIC CONTRIBUTION: This study belonged to an action research programme on blended care pathway development (developing an integrated, coordinated patient care plan that combines remote, digital telehealth applications, self-management tools and face-to-face care). Multidisciplinary teams took a quality collaborative approach to quality improvement (considering patients as stakeholders) to develop 11 blended care pathways. Although professionals and managers were instructed to invite patients onto their teams and to attend care pathway design workshops, few teams (3/11) actually did. Unravelling why this happened will help improve patient and public involvement in care pathway development.

Understanding Co-Creation in a Research Partnership Programme Exploring Patient-Driven Innovations: A Qualitative Longitudinal Study.

BACKGROUND: Research indicates that successful co-creation depends on a shared understanding of co-creation and its related concepts. However, it also shows that, in practice, views on co-creation and how to do it differ. This study aims to explore how patient innovators and researchers in a partnership research programme understand co-creation and how this understanding changes over time. METHODS: An explorative longitudinal qualitative study was conducted with the 'Patients in the Driver's Seat' partnership research programme. Fifty-eight interviews were performed and analysed using a reflexive thematic approach. FINDINGS: Four different ways of understanding co-creation were identified. These can be instrumentally conceptualized as themes using the inputs-process-outputs model: (1) combining different perspectives, experiences and backgrounds (inputs); (2) deliberately dynamic and exploratory (process); (3) striving for equity, not equality (process); and (4) diverse value creation, tangible and intangible (outputs). Together, these themes represent the varied understandings of co-creation among partnership programme members. CONCLUSIONS: Our study of patient innovators and researchers identified four distinct yet complementary understandings of co-creation. The study suggests that co-creation is the sum of its essential components, which can be divided into inputs, process, and outputs. PATIENT OR PUBLIC CONTRIBUTION: This study, and the partnership programme it explored, aims to improve the relevance of research for patients and informal caregivers through an improved understanding of the concept of co-creation within research on patient innovation. All patient innovators involved in the programme were invited, as interviewees and researchers, to contribute to the study design and data analysis.