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1.
Bioscience ; 74(5): 319-321, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38854636

RESUMO

Citizen science is personal. Participation is contingent on the citizens' connection to a topic or to interpersonal relationships meaningful to them. But from the peer-reviewed literature, scientists appear to have an acquisitive data-centered relationship with citizens. This has spurred ethical and pragmatic criticisms of extractive relationships with citizen scientists. We suggest five practical steps to shift citizen-science research from extractive to relational, reorienting the research process and providing reciprocal benefits to researchers and citizen scientists. By virtue of their interests and experience within their local environments, citizen scientists have expertise that, if engaged, can improve research methods and product design decisions. To boost the value of scientific outputs to society and participants, citizen-science research teams should rethink how they engage and value volunteers.

2.
Health Expect ; 27(1): e13974, 2024 02.
Artigo em Inglês | MEDLINE | ID: mdl-39102698

RESUMO

BACKGROUND: An often-hidden element in healthcare students' education is the pedagogy of public involvement, yet public participation can result in deep learning for students with positive impacts on the public who participate. OBJECTIVE: This article aimed to synthesize published literature reviews that described the impact of public participation in healthcare students' education. SEARCH STRATEGY: We searched MEDLINE, EMBASE, ERIC, PsychINFO, CINAHL, PubMed, JBI Database of Systematic Reviews and Implementation Reports, the Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects and the PROSPERO register for literature reviews on public participation in healthcare students' education. INCLUSION CRITERIA: Reviews published in the last 10 years were included if they described patient or public participation in healthcare students' education and reported the impacts on students, the public, curricula or healthcare systems. DATA EXTRACTION AND SYNTHESIS: Data were extracted using a predesigned data extraction form and narratively synthesized. MAIN RESULTS: Twenty reviews met our inclusion criteria reporting on outcomes related to students, the public, curriculum and future professional practice. DISCUSSION AND CONCLUSION: Our findings raise awareness of the benefits and challenges of public participation in healthcare students' education and may inform future research exploring how public participation can best be utilized in higher education. PATIENT OR PUBLIC CONTRIBUTION: This review was inspired by conversations with public healthcare consumers who saw value in public participation in healthcare students' education. Studies included involved public participants, providing a deeper understanding of the impacts of public participation in healthcare students' education.


Assuntos
Participação da Comunidade , Humanos , Currículo , Estudantes de Ciências da Saúde
3.
Health Expect ; 27(4): e70008, 2024 08.
Artigo em Inglês | MEDLINE | ID: mdl-39188109

RESUMO

INTRODUCTION: As the world's population ages, there has been increasing attention to developing health policies to support older adults. Engaging older adults in policy-making is one way to ensure that policy decisions align with their needs and priorities. However, ageist stereotypes often underestimate older adults' ability to participate in such initiatives. This scoping review aims to describe the characteristics and impacts of public engagement initiatives designed to help inform health policy-making for older adults. METHODS: A systematic search of peer-reviewed and grey literature (English only) describing public engagement initiatives in health policy-making for older adults was conducted using six electronic databases, Google and the Participedia website. No geographical, methodological or time restrictions were applied to the search. Eligibility criteria were purposefully broad to capture a wide array of relevant engagement initiatives. The outcomes of interest included participants, engagement methods and reported impacts. RESULTS: This review included 38 papers. The majority of public engagement initiatives were funded or initiated by governments or government agencies as a formal activity to address policy issues, compared to initiatives without a clear link to a specific policy-making process (e.g., research projects). While most initiatives engaged older adults as target participants, there was limited reporting on efforts to achieve participant diversity. Consultation-type engagement activities were most prevalent, compared to deliberative and collaborative approaches. Impacts of public engagement were frequently reported without formal evaluations. Notably, a few articles reported negative impacts of such initiatives. CONCLUSION: This review describes how public engagement practices have been conducted to help inform health policy-making for older adults and the documented impacts. The findings can assist policymakers, government staff, researchers and seniors' advocates in supporting the design and execution of public engagement initiatives in this policy sector. PATIENT OR PUBLIC CONTRIBUTION: Older adult partners from the McMaster University Collaborative for Health and Aging provided strategic advice throughout the key phases of this review, including developing a review protocol, data charting and synthesis and interpreting and presenting the review findings. This collaborative partnership was an essential aspect of this review, enhancing its relevance and meaningfulness for older adults.


Assuntos
Participação da Comunidade , Política de Saúde , Formulação de Políticas , Idoso , Humanos , Participação da Comunidade/métodos
4.
Health Expect ; 27(4): e14130, 2024 08.
Artigo em Inglês | MEDLINE | ID: mdl-38962988

RESUMO

INTRODUCTION: There is currently limited guidance for researchers on Patient and Public Involvement (PPI) for preclinical spinal cord research, leading to uncertainty about design and implementation. This study aimed to develop evidence-informed principles to support preclinical spinal cord researchers to incorporate PPI into their research. METHODS: This study used a modified Delphi method with the aim of establishing consensus on a set of principles for PPI in spinal cord research. Thirty-eight stakeholders including researchers, clinicians and people living with spinal cord injury took part in the expert panel. Participants were asked to rate their agreement with a series of statements relating to PPI in preclinical spinal cord research over two rounds. As part of Round 2, they were also asked to rate statements as essential or desirable. RESULTS: Thirty-eight statements were included in Round 1, after which five statements were amended and two additional statements were added. After Round 2, consensus (> 75% agreement) was reached for a total of 27 principles, with 13 rated as essential and 14 rated as desirable. The principles with highest agreement related to diversity in representation among PPI contributors, clarity of the purpose of PPI and effective communication. CONCLUSION: This research developed a previously unavailable set of evidence-informed principles to inform PPI in preclinical spinal cord research. These principles provide guidance for researchers seeking to conduct PPI in preclinical spinal cord research and may also inform PPI in other preclinical disciplines. PATIENT AND PUBLIC INVOLVEMENT STATEMENT: This study was conducted as part of a project aiming to develop PPI in preclinical spinal cord injury research associated with an ongoing research collaboration funded by the Irish Rugby Football Union Charitable Trust (IRFU CT) and the Science Foundation Ireland Centre for Advanced Materials and BioEngineering Research (SFI AMBER), with research conducted by the Tissue Engineering Research Group (TERG) at the RCSI University of Medicine and Health Sciences. The project aims to develop an advanced biomaterials platform for spinal cord repair and includes a PPI Advisory Panel comprising researchers, clinicians and seriously injured rugby players to oversee the work of the project. PPI is included in this study through the involvement of members of the PPI Advisory Panel in the conceptualisation of this research, review of findings, identification of key points for discussion and preparation of the study manuscript as co-authors.


Assuntos
Técnica Delphi , Participação do Paciente , Traumatismos da Medula Espinal , Humanos , Traumatismos da Medula Espinal/terapia , Participação da Comunidade/métodos , Masculino , Consenso , Feminino , Pesquisa Biomédica , Participação dos Interessados
5.
Health Expect ; 27(1): e13967, 2024 02.
Artigo em Inglês | MEDLINE | ID: mdl-39102667

RESUMO

INTRODUCTION: Patient and public involvement (PPI) in research is an embedded practice in clinical research, however, its role in preclinical or laboratory-based research is less well established and presents specific challenges. This study aimed to explore the perspectives of two key stakeholder groups, preclinical researchers and clinicians on PPI in preclinical research, using spinal cord research as a case study. METHODS: Semi-structured interviews were conducted online with 11 clinicians and 11 preclinical researchers all working in the area of spinal cord injury (SCI). Interviews were transcribed verbatim and analysed thematically. FINDINGS: Nine themes were developed through analysis. Participants' perspectives included that people living with SCI had a right to be involved, that PPI can improve the relevance of preclinical research, and that PPI can positively impact the experiences of researchers. They identified the distance between lab-based research and the daily experiences of living with SCI to be a barrier and proactive management of accessibility and the motivated and networked SCI community as key facilitators. To develop strong partnerships, participants suggested setting clear expectations, ensuring good communication, and demonstrating respect for the time of PPI contributors involved in the research. CONCLUSIONS: While traditionally PPI has been more commonly associated with clinical research, participants identified several potential benefits of PPI in preclinical spinal cord research that have applicability to preclinical researchers more broadly. Preclinical spinal researchers should explore how to include PPI in their work. PATIENT OR PUBLIC CONTRIBUTION: This study was conducted as part of a broader project aiming to develop an evidence base for preclinical PPI that draws on a 5-year preclinical research programme focused on the development of advanced biomaterials for spinal cord repair as a case study. A PPI Advisory Panel comprising seriously injured rugby players, clinicians, preclinical researchers, and PPI facilitators collaborated as co-authors on the conceptualisation, design of the interview protocol, data analysis and writing of this manuscript.


Assuntos
Entrevistas como Assunto , Participação do Paciente , Pesquisadores , Traumatismos da Medula Espinal , Humanos , Traumatismos da Medula Espinal/terapia , Feminino , Masculino , Participação da Comunidade , Pesquisa Qualitativa , Adulto , Pesquisa Biomédica , Pessoa de Meia-Idade
6.
BMC Public Health ; 24(1): 2317, 2024 Aug 26.
Artigo em Inglês | MEDLINE | ID: mdl-39187842

RESUMO

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.


Assuntos
Ciência do Cidadão , Opinião Pública , Humanos , Alemanha , Masculino , Feminino , Pessoa de Meia-Idade , Inquéritos e Questionários , Idoso , Adulto , Disseminação de Informação/métodos , Estudos Epidemiológicos , Estudos de Coortes , Registros de Saúde Pessoal , Motivação
7.
BMC Public Health ; 24(1): 384, 2024 02 05.
Artigo em Inglês | MEDLINE | ID: mdl-38317155

RESUMO

BACKGROUND: Lived Experience (LE) involvement has been shown to improve interventions across diverse sectors. Yet LE contributions to public health approaches to address gambling-related harms remain underexplored, despite notable detrimental health and social outcomes linked to gambling. This paper analyses the potential of LE involvement in public health strategy to address gambling-related harms. It focuses on the example of a UK city-region gambling harms reduction intervention that presented multiple opportunities for LE input. METHODS: Three focus groups and 33 semi-structured interviews were conducted to hear from people with and without LE who were involved in the gambling harms reduction intervention, or who had previous experience of LE-informed efforts for addressing gambling-related harms. People without LE provided reflections on the value and contributions of others' LE to their work. Data analysis combined the Framework Method with themes developed inductively (from people's accounts) and deductively (from the literature, including grey literature). RESULTS: Four themes were identified: (1) personal journeys to LE involvement; (2) the value added by LE to interventions for addressing gambling-related harms; (3) emotional impacts on people with LE; and (4) collective LE and diverse lived experiences. Two figures outlining LE involvement specific to gambling harms reduction in the UK, where public health efforts aimed at addressing gambling-related harms coexist with industry-funded programmes, are proposed. CONCLUSIONS: Integrating a range of LE perspectives in a public health approach to gambling harms reduction requires local access to involvement for people with LE via diverse routes that are free from stigma and present people with LE with options in how they can engage and be heard in decision-making, and how they operate in relation to industry influence. Involving LE in gambling harms reduction requires enabling people to develop the affective and critical skills necessary to navigate complex emotional journeys and a challenging commercial and policy environment.


Assuntos
Jogo de Azar , Humanos , Jogo de Azar/psicologia , Saúde Pública , Terapia por Exercício , Grupos Focais , Bandagens
8.
BMC Public Health ; 24(1): 1226, 2024 May 03.
Artigo em Inglês | MEDLINE | ID: mdl-38702663

RESUMO

BACKGROUND: Libraries in the UK have evolved from traditional book-lending institutions into dynamic community hubs, This study aims to explore the potential of libraries to act as community hubs to promote mental and physical health and wellbeing of community-dwelling adults, drawing on insights from both library users and library staff in England. DESIGN: A mixed-method, cross-sectional study using online survey and interviews with community-dwelling adults and library staff. METHODS: We collected data using a 14-item electronic survey and interviews with library users and staff to gauge perceptions. Descriptive statistics and thematic analysis were used to identify key trends and emergent themes. RESULTS: We included 605 respondents from the survey and interviewed 12 library users and staff. Libraries remain popular and are considered a 'safe place by members of the community, regardless of their frequency of service usage irrespective of whether they are frequent users of services. However, a lack of awareness among library users about community-facing services could act as a hurdle to improving community health and wellbeing. Targeted engagement with residents is needed to increase awareness of libraries' services, including community interventions to help tackle loneliness and inequalities in digital and health literacy. Library staff often did not feel involved in important decision-making. Various barriers, drivers and practical recommendations were identified to leverage libraries as hubs to promote community health and wellbeing. CONCLUSION: Libraries already offer a variety of resources that directly or indirectly support the health and wellbeing of community-dwelling adults and young people. However, public awareness of these services is limited. As we navigate post-pandemic recovery, libraries can serve as platforms for community engagement, fostering resilience, mental health support and reducing social isolation. Recognising libraries' untapped potential can lead to healthier communities and improved wellbeing.


Assuntos
Vida Independente , Bibliotecas , Humanos , Estudos Transversais , Masculino , Adulto , Feminino , Pessoa de Meia-Idade , Inglaterra , Adulto Jovem , Saúde Pública , Idoso , Promoção da Saúde , Inquéritos e Questionários , Adolescente , COVID-19/epidemiologia , COVID-19/psicologia
9.
Proc Natl Acad Sci U S A ; 118(22)2021 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-34050014

RESUMO

Advances in gene editing technologies for human, plant, and animal applications have led to calls from bench and social scientists, as well as a wide variety of societal stakeholders, for broad public engagement in the decision-making about these new technologies. Unfortunately, there is limited understanding among the groups calling for public engagement on CRISPR and other emerging technologies about 1) the goals of this engagement, 2) the modes of engagement and what we know from systematic social scientific evaluations about their effectiveness, and 3) how to connect the products of these engagement exercises to societal decision or policy making. Addressing all three areas, we systematize common goals, principles, and modalities of public engagement. We evaluate empirically the likely successes of various modalities. Finally, we outline three pathways forward that deserve close attention from the scientific community as we navigate the world of Life 2.0.


Assuntos
Pesquisa Biomédica , Repetições Palindrômicas Curtas Agrupadas e Regularmente Espaçadas , Edição de Genes , Formulação de Políticas , Edição de Genes/ética , Edição de Genes/legislação & jurisprudência , Humanos
10.
BMC Palliat Care ; 23(1): 117, 2024 May 07.
Artigo em Inglês | MEDLINE | ID: mdl-38711035

RESUMO

BACKGROUND: The integral model of Palliative Care recognizes the community as essential element in improving quality of life of patients and families. It is necessary to find a formula that allows the community to have a voice. The aim of this scoping review is to identify barriers and facilitators to engage community in PC. METHODS: Systematic search was conducted in NICE, Cochrane Library, Health Evidence, CINAHL and PubMed database. KEYWORDS: Palliative care, End of life care, community networks, community engagement, public engagement, community participation, social participation, barriers and facilitators. RESULTS: Nine hundred seventy-one results were obtained. Search strategy and inclusion criteria yielded 13 studies that were read in detail to identify factors influencing community engagement in palliative care, categorized into: Public health and public engagement; Community attitudes towards palliative care, death and preferences at the end of life; Importance of volunteers in public engagement programs; Compassionate communities. CONCLUSION: Societal awareness must be a facilitated process to catalyse public engagement efforts. National policy initiatives and regional system support provide legitimacy and focus is essential for funding. The first step is to get a sense of what is important to society, bearing in mind cultural differences and to channel those aspects through health care professionals; connecting the most assistential part with community resources. The process and long-term results need to be systematically evaluated.


Assuntos
Cuidados Paliativos , Humanos , Participação da Comunidade/métodos , Participação da Comunidade/psicologia , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Cuidados Paliativos/normas , Assistência Terminal , Redes Comunitárias
11.
BMC Palliat Care ; 23(1): 98, 2024 Apr 12.
Artigo em Inglês | MEDLINE | ID: mdl-38605315

RESUMO

BACKGROUND: Research evidence suggests that a lack of engagement with palliative care and advance care planning could be attributed to a lack of knowledge, presence of misconceptions and stigma within the general public. However, the importance of how death, dying and bereavement are viewed and experienced has been highlighted as an important aspect in enabling public health approaches to palliative care. Therefore, research which explores the public views on strategies to facilitate engagement with palliative care and advance care planning is required. METHODS: Exploratory, qualitative design, utilising purposive random sampling from a database of participants involved in a larger mixed methods study. Online semi-structured interviews were conducted (n = 28) and analysed using reflexive thematic analysis. Thematic findings were mapped to the social-ecological model framework to provide a holistic understanding of public behaviours in relation to palliative care and advance care planning engagement. RESULTS: Three themes were generated from the data: "Visibility and relatability"; "Embedding opportunities for engagement into everyday life"; "Societal and cultural barriers to open discussion". Evidence of interaction across all five social ecological model levels was identified across the themes, suggesting a multi-level public health approach incorporating individual, social, structural and cultural aspects is required for effective public engagement. CONCLUSIONS: Public views around potential strategies for effective engagement in palliative care and advance care planning services were found to be multifaceted. Participants suggested an increase in visibility within the public domain to be a significant area of consideration. Additionally, enhancing opportunities for the public to engage in palliative care and advance care planning within everyday life, such as education within schools, is suggested to improve death literacy and reduce stigma. For effective communication, socio-cultural aspects need to be explored when developing strategies for engagement with all members of society.


Assuntos
Planejamento Antecipado de Cuidados , Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Grupos Populacionais , Estigma Social , Saúde Pública , Pesquisa Qualitativa
12.
Health Res Policy Syst ; 22(1): 105, 2024 Aug 13.
Artigo em Inglês | MEDLINE | ID: mdl-39135114

RESUMO

BACKGROUND: It is vital that health service delivery and health interventions address patients' needs or preferences, are relevant for practice and can be implemented. Involving those who will use or deliver healthcare in priority-setting can lead to health service delivery and research that is more meaningful and impactful. This is particularly crucial in rural communities, where limited resources and disparities in healthcare and health outcomes are often more pronounced. The aim of this study was to determine the health and healthcare priorities in rural communities using a region-wide community engagement approach. METHODS: This multi-methods study was conducted in five rural communities in the Grampians region, Western Victoria, Australia. It involved six concept mapping steps: (1) preparation, (2) generation (brainstorming statements and identifying rating criteria), (3) structuring statements (sorting and rating statements), (4) representation of statements, (5) interpretation of the concept map and (6) utilization. Community forums, surveys and stakeholder consultations with community members and health professionals were used in Step 2. An innovative online group concept mapping platform, involving consumers, health professionals and researchers was used in Step 3. RESULTS: Overall, 117 community members and 70 health professionals identified 400 health and healthcare issues. Six stakeholder consultation sessions (with 16 community members and 16 health professionals) identified three key values for prioritizing health issues: equal access for equal need, effectiveness and impact (number of people affected). Actionable priorities for healthcare delivery were largely related to access issues, such as the challenges navigating the healthcare system, particularly for people with mental health issues; the lack of sufficient general practitioners and other health providers; the high travel costs; and poor internet coverage often impacting technology-based interventions for people in rural areas. CONCLUSIONS: This study identified actionable health and healthcare priorities from the perspective of healthcare service users and providers in rural communities in Western Victoria. Issues related to access, such as the inequities in healthcare costs, the perceived lack of quality and availability of services, particularly in mental health and disability, were identified as priorities. These insights can guide future research, policy-making and resource allocation efforts to improve healthcare access, quality and equity in rural communities.


Assuntos
Pessoal de Saúde , Prioridades em Saúde , População Rural , Humanos , Vitória , Feminino , Masculino , Serviços de Saúde Rural/organização & administração , Atenção à Saúde , Participação da Comunidade , Adulto , Pesquisadores , Pessoa de Meia-Idade , Participação dos Interessados , Acessibilidade aos Serviços de Saúde , Idoso , Pesquisa sobre Serviços de Saúde
13.
Health Res Policy Syst ; 22(1): 10, 2024 Jan 15.
Artigo em Inglês | MEDLINE | ID: mdl-38225642

RESUMO

BACKGROUND: In Ghana, the community-based health planning and services (CHPS) policy highlights the significance of both community health management committees (CHMCs) and community health volunteers (CHVs) in the Ghanaian health system. However, research into their specific effects on health system improvement is scarce. Some research has focussed on the roles of the CHMCs/CHVs in implementing specific targeted health interventions but not on improving the overall health system. Therefore, this research aims to examine the role of the CHMCs and CHVs in improving the Ghanaian health system. METHODS: The study was conducted in three districts in the Ashanti region of Ghana. A total of 35 participants, mainly health service users and health professionals, participated in the study. Data were collected using semi-structured individual in-depth interviews. Participants were selected according to their patient-public engagement or community health activity roles. Data were transcribed and analysed descriptively using NVIVO 12 Plus. RESULTS: We found that the effectiveness of CHMCs and CHVs in health systems improvement depends largely on how members are selected. Additionally, working through CHMC and CHVs improves resource availability for community health services, and using them in frontline community health activities improves health outcomes. CONCLUSIONS: Overall, we recommend that, for countries with limited healthcare resources such as Ghana, leveraging the significant role of the CHMCs and CHVs is key in complementing government's efforts to improve resource availability for healthcare services. Community health management committees and CHVs are key in providing basic support to communities with limited healthcare personnel. Thus, there is a need to strengthen their capacities to improve the overall health system.


Assuntos
Atenção à Saúde , Saúde Pública , Humanos , Gana , Serviços de Saúde Comunitária , Voluntários
14.
Ergonomics ; : 1-16, 2024 Sep 25.
Artigo em Inglês | MEDLINE | ID: mdl-39323245

RESUMO

The field of ergonomics and human factors (E/HF) has an urgent need for increased uptake of specialists to meet the growing demands of the sector and related industries employing ergonomists. In the absence of E/HF being part of the school curriculum, one way of achieving this is through public engagement activities. Specialists in E/HF are motivated by understanding people and interactions, inherent qualities in outreach and engagement, so we are well placed to practice what we preach by understanding our own users, the consumers of our science. In this paper, we present a curriculum map and museum exhibition model as part of ongoing work to develop a public exhibition, called 'Think Human', hosted at the Museum of Making in Derby, England, from September 2024, as part of ongoing work in timely celebration of the 75th anniversary of the UK's Chartered Institute of Ergonomics and Human Factors (CIEHF).


We present a framework for public engagement with ergonomics, exemplified through the development of a museum exhibition which draws on a model of user experience. With 14­18 year-old students being a key target audience, we map elements of the school curriculum onto the core ergonomics knowledge areas.

15.
Geriatr Nurs ; 56: 159-166, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38354658

RESUMO

The care for people with dementia (PwD) in low- and middle-income countries (LMICs) is dominated by home care and supplemented sporadically by public care provided using public resources. In the context of community resources cannot meet the demand for high-quality services for PwD, dementia-friendly communities (DFCs) provide ideas for alleviating this situation by integrating resources from multiple stakeholders. However, there is still a considerable gap between the capacity of services and the demand of PwD. Based on the experience of elderly services and DFCs construction in Nanjing, China, this study developed a stakeholder collaboration model and clarified the collaborative relationship among stakeholders such as the government, communities, and medical institutions in meeting the needs of PwD. This work summarizes the partnerships and specific actions of stakeholders and highlights the importance of facilitating resource integration to provide comprehensive services.


Assuntos
Demência , Humanos , Idoso , China
16.
Zoo Biol ; 2024 Sep 04.
Artigo em Inglês | MEDLINE | ID: mdl-39228291

RESUMO

Maintaining a diverse gene pool is important in the captive management of zoo populations, especially in endangered species such as the pink pigeon (Nesoenas mayeri). However, due to the limited number of breeding individuals and relaxed natural selection, the loss of variation and accumulation of harmful variants is inevitable. Inbreeding results in a loss of fitness (i.e., inbreeding depression), principally because related parents are more likely to transmit a copy of the same recessive deleterious genetic variant to their offspring. Genomics-informed captive breeding can manage harmful variants by artificial selection, reducing the genetic load by avoiding the inheritance of two copies of the same harmful variant. To explain this concept in an interactive way to zoo visitors, we developed a sonification game to represent the fitness impacts of harmful variants by detuning notes in a familiar musical melody (i.e., Beethoven's Für Elise). Conceptually, zoo visitors play a game aiming to create the most optimal pink pigeon offspring in terms of inbreeding depression. They select virtual crosses between pink pigeon individuals and listen for the detuning of the melody, which represents the realised load of the resultant offspring. Here we present the sonification algorithm and the results of an online survey to see whether participants could identify the most and least optimal offspring from three potential pink pigeon offspring. Of our 98 respondents, 85 (86.7%) correctly identified the least optimal offspring, 73 (74.5%) correctly identified the most optimal, and 62 (63.3%) identified both the most and least optimal offspring using only the sonification.

17.
Immunol Cell Biol ; 101(7): 590-597, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-37227221

RESUMO

In biomedical research, there is no situation where public engagement (PE) and public involvement (PI) are not possible, important or even expected. Whether we work in the clinic or in the laboratory, all researchers have a duty to reach out, demonstrate the added value that science brings to society, and make a real difference to the way research is done. Here we outline the benefits of PE and PI for individual researchers and their employers, for members of the public, and for society at large. We offer solutions to overcome major challenges, including a step-by-step guide for researchers to embrace PE and PI in their career, and make a call to action for a cultural shift towards embedding PE and PI in our modern academic environment.


Assuntos
Pesquisa Biomédica
18.
Genet Med ; 25(5): 100819, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-36919843

RESUMO

PURPOSE: Genomic sequencing can generate complex results, including variants of uncertain significance (VUS). In general, VUS should not inform clinical decision-making. This study aimed to assess the public's expected management of VUS. METHODS: An online, hypothetical survey was conducted among members of the Canadian public preceded by an educational video. Participants were randomized to 1 of 2 arms, VUS or pathogenic variant in a colorectal cancer gene, and asked which types of health services they expected to use for this result. Expected health service use was compared between randomization arms, and associations between participants' sociodemographic characteristics, attitudes, and medical history were explored. RESULTS: Among 1003 respondents (completion rate 60%), more participants expected to use each type of health service for a pathogenic variant than for a VUS. However, a considerable proportion of participants expected to request monitoring (73.4%) and consult health care providers (60.9%) for a VUS. There was evidence to support associations between expectation to use health services for a VUS with family history of genetic disease, family history of cancer, education, and attitudes toward health care and technology. CONCLUSION: Many participants expected to use health services for a VUS in a colorectal cancer predisposition gene, suggesting a potential disconnect between patients' expectations for VUS management and guideline-recommended care.


Assuntos
Neoplasias Colorretais , Testes Genéticos , Humanos , Testes Genéticos/métodos , Canadá/epidemiologia , Inquéritos e Questionários , Conhecimentos, Atitudes e Prática em Saúde , Neoplasias Colorretais/epidemiologia , Neoplasias Colorretais/genética , Neoplasias Colorretais/terapia , Predisposição Genética para Doença
19.
J Sleep Res ; 32(3): e13765, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-36325762

RESUMO

Informal learning settings such as museums provide unique opportunities for educating a local community about sleep. However, in such settings, information must be capable of immediately inciting interest. We developed a series of sleep "icebreakers" (brief, informal facts) to determine whether they elicited interest in sleep and encouraged behavioural change. There were 859 participants across three cross-sectional samples: (a) members of the local museum; (b) Mechanical Turk workers who responded to a "sleep" study advertisement; and (c) Mechanical Turk workers who responded to a "various topics" study advertisement that did not mention sleep. All three samples demonstrated high interest in sleep topics, though delayed recall of the icebreakers was strongest in participants who expected to learn about the sleep topics. Icebreaker interest ratings were independent of age, gender and race/ethnicity, suggesting that sleep is a topic of universal interest. Importantly, regardless of demographics and sample, the more the icebreakers interested the participants, the more likely participants were to indicate willingness to donate to a sleep exhibit, change their sleep behaviours, and post to social media. Thus, sleep icebreakers can rapidly elicit people's interest, and future outreach efforts should couple icebreakers with opportunities for subsequent personalized learning.


Assuntos
Museus , Sono , Humanos , Estudos Transversais , Etnicidade , Rememoração Mental
20.
Health Expect ; 2023 Oct 26.
Artigo em Inglês | MEDLINE | ID: mdl-37882224

RESUMO

BACKGROUND: Achieving universal health coverage (UHC) in the context of limited resources will require prioritising the most vulnerable and ensuring health policies and services are responsive to their needs. One way of addressing this is through the engagement of marginalised voices in the priority setting process. Public engagement approaches that enable group level deliberation as well as individual level preference capturing might be valuable in this regard, but there are limited examples of their practical application, and gaps in understanding their outcomes, especially with rural populations. OBJECTIVE: To address this gap, we implemented a modified priority setting tool (Choosing All Together-CHAT) that enables individuals and groups to make trade-offs to demonstrate the type of health services packages that may be acceptable to a rural population. The paper presents the findings from the individual choices as compared to the group choices, as well as the differences among the individual choices using this tool. METHODS: Participants worked in groups and as individuals to allocate stickers representing the available budget to different health topics and interventions using the CHAT tool. The allocations were recorded at each stage of the study. We calculated the median and interquartile range across study participants for the topic totals. To examine differences in individual choices, we performed Wilcoxon rank sum tests. RESULTS: The results show that individual interests were mostly aligned with societal ones, and there were no statistically significant differences between the individual and group choices. However, there were some statistically significant differences between individual priorities based on demographic characteristics like age. DISCUSSION: The study demonstrates that giving individuals greater control and agency in designing health services packages can increase their participation in the priority setting process, align individual and community priorities, and potentially enhance the legitimacy and acceptability of priority setting. Methods that enable group level deliberation and individual level priority setting may be necessary to reconcile plurality. The paper also highlights the importance of capturing the details of public engagement processes and transparently reporting on these details to ensure valuable outcomes. PUBLIC CONTRIBUTION: The facilitator of the CHAT groups was a member from the community and underwent training from the research team. The fieldworkers were also from the community and were trained and paid to capture the data. The participants were all members of the rural community- the study represents their priorities.

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