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1.
Immunol Cell Biol ; 102(5): 315-320, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38693615

RESUMEN

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.


Asunto(s)
Alergia e Inmunología , Arte , Humanos , Alergia e Inmunología/historia , Ceguera/inmunología , Ceguera/terapia , Baja Visión/inmunología , Ciencia
2.
Int J Behav Nutr Phys Act ; 21(1): 71, 2024 Jul 08.
Artículo en Inglés | MEDLINE | ID: mdl-38978008

RESUMEN

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.


Asunto(s)
Dieta , Seguridad Alimentaria , Estudiantes , Humanos , Universidades , Dieta/métodos , Promoción de la Salud/métodos
3.
Int J Equity Health ; 23(1): 41, 2024 Feb 27.
Artículo en Inglés | MEDLINE | ID: mdl-38408990

RESUMEN

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.


Asunto(s)
Atención a la Salud , Equidad en Salud , Humanos , Ciencia de la Implementación , Salud Pública , Planificación Social
4.
Support Care Cancer ; 32(10): 656, 2024 Sep 12.
Artículo en Inglés | MEDLINE | ID: mdl-39261318

RESUMEN

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.


Asunto(s)
Neoplasias de los Genitales Femeninos , Yoga , Humanos , Femenino , Neoplasias de los Genitales Femeninos/psicología , Neoplasias de los Genitales Femeninos/terapia , Persona de Mediana Edad , Adulto , Estudios de Factibilidad , Consenso , Anciano
5.
Environ Res ; 252(Pt 2): 118914, 2024 Jul 01.
Artículo en Inglés | MEDLINE | ID: mdl-38609071

RESUMEN

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.


Asunto(s)
Ciencia Ciudadana , Salud Ambiental , Salud Ambiental/métodos , Humanos , Exposición a Riesgos Ambientales , Proyectos de Investigación
6.
BMC Psychiatry ; 24(1): 615, 2024 Sep 16.
Artículo en Inglés | MEDLINE | ID: mdl-39285365

RESUMEN

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.


Asunto(s)
Trastorno por Déficit de Atención con Hiperactividad , Estudios de Factibilidad , Satisfacción del Paciente , Prueba de Estudio Conceptual , Humanos , Femenino , Masculino , Adulto , Trastorno por Déficit de Atención con Hiperactividad/terapia , Trastorno por Déficit de Atención con Hiperactividad/psicología , Educación del Paciente como Asunto/métodos , Persona de Mediana Edad , Aceptación de la Atención de Salud/psicología , Calidad de Vida/psicología , Autoeficacia , Noruega , Psicoterapia de Grupo/métodos
7.
Global Health ; 20(1): 9, 2024 Jan 17.
Artículo en Inglés | MEDLINE | ID: mdl-38233942

RESUMEN

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.


Asunto(s)
Países en Desarrollo , Salud Pública , Humanos , Clase Social
8.
Intern Med J ; 2024 Oct 01.
Artículo en Inglés | MEDLINE | ID: mdl-39351824

RESUMEN

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.

9.
J Public Health (Oxf) ; 46(3): 419-429, 2024 Aug 25.
Artículo en Inglés | MEDLINE | ID: mdl-38702850

RESUMEN

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.


Asunto(s)
Grupos Focales , Policia , Conducta Sedentaria , Humanos , Estudios Longitudinales , Masculino , Femenino , Promoción de la Salud/métodos , Adulto , Ejercicio Físico , Reino Unido
10.
Health Expect ; 27(5): e70073, 2024 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-39445810

RESUMEN

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.


Asunto(s)
Antropología Cultural , Personal de Salud , Guías de Práctica Clínica como Asunto , Femenino , Humanos , Embarazo , Entrevistas como Asunto , Servicios de Salud Materna , Investigación Cualitativa , Tanzanía
11.
Health Expect ; 27(2): e14035, 2024 04.
Artículo en Inglés | MEDLINE | ID: mdl-38567878

RESUMEN

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.


Asunto(s)
Prestación Integrada de Atención de Salud , Humanos , Prestación Integrada de Atención de Salud/organización & administración , Ciencia de la Implementación
12.
Health Expect ; 27(3): e14101, 2024 06.
Artículo en Inglés | MEDLINE | ID: mdl-38855873

RESUMEN

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.


Asunto(s)
Vías Clínicas , Personal de Salud , Participación del Paciente , Humanos , Personal de Salud/psicología , Entrevistas como Asunto , Actitud del Personal de Salud , Investigación Cualitativa
13.
Health Expect ; 27(5): e70003, 2024 10.
Artículo en Inglés | MEDLINE | ID: mdl-39210782

RESUMEN

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.


Asunto(s)
Participación del Paciente , Investigación Cualitativa , Humanos , Estudios Longitudinales , Femenino , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Adulto
14.
Scand J Public Health ; : 14034948241265948, 2024 Aug 24.
Artículo en Inglés | MEDLINE | ID: mdl-39180304

RESUMEN

AIMS: A multidisciplinary group of experts and patients developed the Model for ASsessing the value of Artificial Intelligence (MAS-AI) to ensure an evidence-based and patient-centered approach to introducing artificial intelligence technologies in healthcare. In this article, we share our experiences with meaningfully involving a patient in co-creating a research project concerning complex and technically advanced topics. METHODS: The co-creation was evaluated by means of initial reflections from the research team before the project started, in a continuous logbook, and through semi-structured interviews with patients and two researchers before and after the active co-creation phase of the project. RESULTS: There were initial doubts about the feasibility of including patients in this type of project. Co-creation ensured relevance to patients, a holistic research approach and the debate of ethical considerations. Due to one patient dropping out, it is important to foresee and support the experienced challenges of time and energy spent by the patient in future projects. Having a multidisciplinary team helped the collaboration. A mutual reflective evaluation provided insights into the process which we would otherwise have missed. CONCLUSIONS: We found it possible to create complex and data-intense research projects with patients. Including patients benefitted the project and gave researchers new perspectives on their own research. Mutual reflection throughout the project is key to maximise learning for all parties involved.

15.
BMC Public Health ; 24(1): 2317, 2024 Aug 26.
Artículo en Inglés | MEDLINE | ID: mdl-39187842

RESUMEN

BACKGROUND: Loss to follow-up in long-term epidemiological studies is well-known and often substantial. Consequently, there is a risk of bias to the results. The motivation to take part in an epidemiological study can change over time, but the ways to minimize loss to follow-up are not well studied. The Citizen Science approach offers researchers to engage in direct discussions with study participants and to integrate their opinions and requirements into cohort management. METHODS: Guided group discussions were conducted with study participants from the KORA cohort in the Augsburg Region in Germany, established 40 years ago, as well as a group of independently selected citizens. The aim was to look at the relevant aspects of health studies with a focus on long-term participation. A two-sided questionnaire was developed subsequently in a co-creation process and presented to 500 KORA participants and 2,400 employees of the research facility Helmholtz Munich. RESULTS: The discussions revealed that altruistic motivations, (i.e. supporting research and public health), personal benefits (i.e. a health check-up during a study examination), data protection, and information about research results in layman's terms were crucial to ensure interest and long-term study participation. The results of the questionnaire confirmed these aspects and showed that exclusively digital information channels may be an obstacle for older and less educated people. Thus, paper-based media such as newsletters are still important. CONCLUSIONS: The findings shed light on cohort management and long-term engagement with study participants. A long-term health study needs to benefit public and individual health; the institution needs to be trustworthy; and the results and their impact need to be disseminated in widely understandable terms and by the right means of communication back to the participants.


Asunto(s)
Ciencia Ciudadana , Opinión Pública , Humanos , Alemania , Masculino , Femenino , Persona de Mediana Edad , Encuestas y Cuestionarios , Anciano , Adulto , Difusión de la Información/métodos , Estudios Epidemiológicos , Estudios de Cohortes , Registros de Salud Personal , Motivación
16.
BMC Public Health ; 24(1): 778, 2024 Mar 12.
Artículo en Inglés | MEDLINE | ID: mdl-38475750

RESUMEN

BACKGROUND: Weight management services have not always benefitted everyone equally. People who live in more deprived areas, racially minoritised communities, those with complex additional needs (e.g., a physical or mental disability), and men are less likely to take part in weight management services. This can subsequently widen health inequalities. One way to counter this is to co-design services with under-served groups to better meet their needs. Using a case study approach, we explored how co-designed adult weight management services were developed, the barriers and facilitators to co-design, and the implications for future commissioning. METHODS: We selected four case studies of adult weight management services in Southwest England where co-design had been planned, representing a range of populations and settings. In each case, we recruited commissioners and providers of the services, and where possible, community members involved in co-design activities. Interviews were conducted online, audio-recorded, transcribed verbatim, and analysed using thematic analysis. RESULTS: We interviewed 18 participants (8 female; 10 male): seven commissioners, eight providers, and three community members involved in co-designing the services. The case studies used a range of co-design activities (planned and actualised), from light-touch to more in-depth approaches. In two case studies, co-design activities were planned but were not fully implemented due to organisational time or funding constraints. Co-design was viewed positively by participants as a way of creating more appropriate services and better engagement, thus potentially leading to reduced inequalities. Building relationships- with communities, individual community members, and with partner organisations- was critical for successful co-design and took time and effort. Short-term and unpredictable funding often hindered co-design efforts and could damage relationships with communities. Some commissioners raised concerns over the limited evidence for co-design, while others described having to embrace "a different way of thinking" when commissioning for co-design. CONCLUSIONS: Co-design is an increasingly popular approach to designing health in services but can be difficult to achieve within traditional funding and commissioning practices. Drawing on our case studies, we present key considerations for those wanting to co-design health services, noting the importance of building strong relationships, creating supportive organisational cultures, and developing the evidence base.


Asunto(s)
Investigación Cualitativa , Masculino , Humanos , Femenino , Inglaterra
17.
BMC Public Health ; 24(1): 2772, 2024 Oct 10.
Artículo en Inglés | MEDLINE | ID: mdl-39390476

RESUMEN

BACKGROUND: The transition period from adolescence to early adulthood is critical for developing new nutritional behaviors, making higher education students an important target group for public health nutrition interventions. Given the complexity of nutrition-related behaviors and their various determinants, involving the student population (the future beneficiaries of interventions) and the partners engaged in their implementation when designing campus nutrition interventions is essential. Citizens' assemblies are deliberative processes which are more and more frequently organized to co-create solutions to complex problems. This study aims 1) to design and implement a student citizens' assembly using participatory research methods, 2) to describe its process and evaluate its transferability, 3) to evaluate changes in dietary habits, knowledge and citizen practices among students participating in this assembly. METHODS: This study will take place at a French university (University Sorbonne Paris Nord, USPN) located in socio-economically disadvantaged suburbs of Paris. The student citizens' assembly will gather a mini-public of 30 students enrolled at the time of the study and a co-creation team of academic and non-academic partners involved in student life, nutrition, physical activity, or public policies. The aim of the assembly is to co-create a set of concrete proposals that would enhance USPN students' access to sustainable diets and physical activity. The protocol is based on a continuous process evaluation and a pre-post design among the mini-public. A mixed-method framework combining quantitative and qualitative approaches will be developed. This study will make use of (i) field observations of the intervention process and transferability, (ii) data collected by questionnaires on pre- and post- dietary habits, knowledge and citizen practices of the mini-public, and (iii) pre-post interviews with a subsample of the same mini-public. DISCUSSION: Relying on participatory research methods, this study will provide new insights into involving higher education students and diverse partners in co-creating campus nutrition interventions. Through the collaborative work of researchers, higher education students, university representatives, public institutions, and local and community actors, this study will provide evidence-based guidance for designing innovative and contextually-relevant nutrition interventions in the higher education setting. TRIAL REGISTRATION: This research was registered at the ClinicalTrial.gov (NCT06580795; registration date: 2024-08-30; https://www. CLINICALTRIALS: gov/study/NCT06580795 ).


Asunto(s)
Investigación Participativa Basada en la Comunidad , Estudiantes , Adolescente , Femenino , Humanos , Masculino , Adulto Joven , Conducta Alimentaria , Francia , Conocimientos, Actitudes y Práctica en Salud , Promoción de la Salud/métodos , Estudiantes/psicología , Universidades
18.
BMC Public Health ; 24(1): 973, 2024 Apr 06.
Artículo en Inglés | MEDLINE | ID: mdl-38582850

RESUMEN

BACKGROUND: European epidemic intelligence (EI) systems receive vast amounts of information and data on disease outbreaks and potential health threats. The quantity and variety of available data sources for EI, as well as the available methods to manage and analyse these data sources, are constantly increasing. Our aim was to identify the difficulties encountered in this context and which innovations, according to EI practitioners, could improve the detection, monitoring and analysis of disease outbreaks and the emergence of new pathogens. METHODS: We conducted a qualitative study to identify the need for innovation expressed by 33 EI practitioners of national public health and animal health agencies in five European countries and at the European Centre for Disease Prevention and Control (ECDC). We adopted a stepwise approach to identify the EI stakeholders, to understand the problems they faced concerning their EI activities, and to validate and further define with practitioners the problems to address and the most adapted solutions to their work conditions. We characterized their EI activities, professional logics, and desired changes in their activities using NvivoⓇ software. RESULTS: Our analysis highlights that EI practitioners wished to collectively review their EI strategy to enhance their preparedness for emerging infectious diseases, adapt their routines to manage an increasing amount of data and have methodological support for cross-sectoral analysis. Practitioners were in demand of timely, validated and standardized data acquisition processes by text mining of various sources; better validated dataflows respecting the data protection rules; and more interoperable data with homogeneous quality levels and standardized covariate sets for epidemiological assessments of national EI. The set of solutions identified to facilitate risk detection and risk assessment included visualization, text mining, and predefined analytical tools combined with methodological guidance. Practitioners also highlighted their preference for partial rather than full automation of analyses to maintain control over the data and inputs and to adapt parameters to versatile objectives and characteristics. CONCLUSIONS: The study showed that the set of solutions needed by practitioners had to be based on holistic and integrated approaches for monitoring zoonosis and antimicrobial resistance and on harmonization between agencies and sectors while maintaining flexibility in the choice of tools and methods. The technical requirements should be defined in detail by iterative exchanges with EI practitioners and decision-makers.


Asunto(s)
Salud Digital , Brotes de Enfermedades , Animales , Humanos , Europa (Continente)/epidemiología , Brotes de Enfermedades/prevención & control , Salud Pública , Inteligencia
19.
Appetite ; 197: 107319, 2024 06 01.
Artículo en Inglés | MEDLINE | ID: mdl-38514019

RESUMEN

Research suggests that as we age, protein intake, recognised as vital for combating negative health outcomes, consistently falls below recommendations in older adults. Decreased food intake, combined with age-related eating complications is a major determinant of this protein undernutrition. If nutritional interventions are to be effective and sustainable, they must enable eating pleasure, cater for personal preferences and be adaptable to different eating patterns. As such, we aimed to identify successful strategies for at-home protein-fortification to empower older adults to take a personalised approach to their nutrition, without requiring a large behavioural change. To explore healthy older adults' (age 70+) acceptability and preferences for at-home protein fortification, European project Fortiphy led discussions with older adults (n = 37) and caregivers of older adults (n = 15) to develop high-protein recipes, which were then utilised in a home-use trial with healthy older adults (n = 158). Each fortified recipe was paired with a questionnaire to rate the ease of preparation and liking, and an end-of-study questionnaire was provided to capture overall opinions and preferences. The uniqueness of this study is that the protein fortified recipes were prepared and tested by older adults themselves, in their own homes. Findings showed that older adults were unaware of the importance of protein in ageing and did not have a desire to fortify their foods at present. Yet, they were positive regarding the concept and highlighted the importance of taste, familiar ingredients, and preferred preparation methods. Cultural preferences across countries were identified as having the most influence on the liking of fortified meals. This study also indicated a need for increased awareness of protein requirements to influence the motivation to use fortification.


Asunto(s)
Alimentos Fortificados , Estado Nutricional , Humanos , Anciano , Envejecimiento , Francia , Reino Unido
20.
Appetite ; 192: 107109, 2024 01 01.
Artículo en Inglés | MEDLINE | ID: mdl-37914038

RESUMEN

The UK has an ever-increasing ageing population; hence, promoting balanced nutrition can have fundamental health and cost benefits. In addition, the majority of older adults' dietary fibre intake is below recommendations and this is despite its well-cited benefits; therefore, more emphasis should be placed on identifying viable age-suitable strategies to overcome the associated dietary fibre-related knowledge gap. Accordingly, one hundred and seventy older adults (65-87 years) were recruited to partake in two survey related studies: (1) initial insights (e.g., dietary fibre-related knowledge, awareness, attitudes and behaviour as well as information preferences) were captured to inform the design of educational materials; and (2) the impact of two targeted educational materials on modulating older adults' future dietary fibre intake was tested. Older adults were willing to learn more about dietary fibre and requested additional information relating to its benefits, recommendations and food-based examples in a clear and accessible format. Therefore, two educational materials (factsheet and practical tips) were developed encompassing key themes. Overall, older adults engaged with the educational materials (regardless of topic and format); thus, demonstrating the potential benefits of this approach going forwards. There was strong agreement with all variables: learning something new, change future dietary fibre intake, format liking, content engaging and share with others as well as the overall experience being cited as useful/helpful. Going forwards, importance should be placed on measuring dietary fibre consumption post engaging with educational materials. In addition, utilising a holistic approach incorporating support from different sources (e.g., health professionals, government, food companies, supermarkets and community) could be fundamental in helping older adults to consume more dietary fibre and subsequently contributing to positive health outcomes.


Asunto(s)
Envejecimiento , Estado Nutricional , Humanos , Anciano , Encuestas y Cuestionarios , Fibras de la Dieta
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