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1.
J Grad Med Educ ; 15(2): 257-260, 2023 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-37139201

RESUMO

Background: Learners benefit more from narrative feedback than numerical scores on formative assessments, yet they often report that feedback is lacking in quality and quantity. Changes to the formatting of assessment forms is a practical intervention with limited literature regarding its impact on feedback. Objective: This study explores the effect of a formatting change (ie, relocating the comment section from the bottom of a form to the top) on residents' oral presentation assessment forms and if this affects the quality of narrative feedback. Methods: We used a feedback scoring system based on the theory of deliberate practice to evaluate the quality of written feedback provided to psychiatry residents on assessment forms from January to December 2017 before and after a form design change. Word count and presence of narrative comments were also assessed. Results: Ninety-three assessment forms with the comment section at bottom and 133 forms with the comment section at the top were evaluated. When the comment section was placed at the top of the evaluation form, there were significantly more comment sections with any number of words than left blank (X 2(1)=6.54, P=.011) as well as a significant increase in the specificity related to the task component, or what was done well (X 2(3)=20.12, P≤.0001). Conclusions: More prominent placement of the feedback section on assessment forms increased the number of sections filled as well as the specificity related to the task component.


Assuntos
Internato e Residência , Visitas de Preceptoria , Humanos , Retroalimentação , Narração , Redação , Competência Clínica
2.
PLoS One ; 17(12): e0278983, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36520833

RESUMO

BACKGROUND: The Canadian province of Nova Scotia recently became the first jurisdiction in North America to pass deemed consent organ donation legislation. The announcement of this legislation generated substantial online discussion, which we analyzed to provide insights on public perception. METHODS: We performed directed content analysis on 2663 user-generated comments appearing on two widely-shared Canadian Broadcasting Company (CBC) articles published online in April 2019. We determined levels of support and opposition in comments and described the specific rhetoric used for doing so. We also performed one-way ANOVA and Pearson chi-square tests to determine how the comments were being received and engaged by other users. RESULTS: A range of commentary was present in both support and opposition to the changes in legislation. There were more negative than positive comments, and negative commentary generated more replies. Positive comments were received more positively by other users while negative comments were received more negatively. The total sum of negative comments was greatly influenced by a small number of very active participants. Negative commentary focused more on broad concepts and principles related to government, power, and individual rights rather than specific issues in the Nova Scotian context. Substantial issues of trust in the government and healthcare system were evident. CONCLUSIONS: There were strong positive and negative sentiments expressed in the comments, but the total sum of negativity in the comments was significantly influenced by a small number of commentators. Analysis on the presumed consent concerns can be helpful to inform public outreach efforts.


Assuntos
Obtenção de Tecidos e Órgãos , Humanos , Nova Escócia , Dissidências e Disputas , Confiança , América do Norte
3.
Can Med Educ J ; 13(5): 121, 2022 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-36310895
4.
BMC Med Educ ; 22(1): 583, 2022 Jul 29.
Artigo em Inglês | MEDLINE | ID: mdl-35906632

RESUMO

BACKGROUND: Implementing competency-based medical education (CBME) in post-graduate medical education (PGME) is a complex process that requires multiple systemic changes in a complex system that is simultaneously engaged in multiple initiatives. These initiatives often compete for attention during the implementation of CBME and produce unintended and unanticipated consequences. Understanding the impact of this context is necessary for evaluating the effectiveness of CBME. The purpose of the study was to identify factors, such as contexts and processes, that contribute to the implementation of CBME. METHODS: We conducted a realist evaluation using data collected from 15 programs through focus groups with residents (2 groups, n = 16) and faculty (one group, n = 8), and semi-structured interviews with program directors (n = 18), and program administrators (n = 12) from 2018 to 2021. Data were analyzed using a template analysis based on a coding framework that was developed from a sample of transcripts, the context-mechanism-outcomes framework for realist evaluations, and the core components of CBME. RESULTS: The findings demonstrate that simultaneous initiatives in the academic health sciences system creates a key context for CBME implementation - rivalries for attention - and specifically, the introduction of curricular management systems (CMS) concurrent to, but separate from, the implementation of CBME. This context influenced participants' participation, communication, and adaptation during CBME implementation, which led to change fatigue and unmet expectations for the collection and use of assessment data. CONCLUSIONS: Rival initiatives, such as the concurrent implementation of a new CMS, can have an impact on how programs implement CBME and greatly affect the outcomes of CBME. Mitigating the effects of rivals for attention with flexibility, clear communication, and training can facilitate effective implementation of CBME.


Assuntos
Educação Baseada em Competências , Educação Médica , Canadá , Educação de Pós-Graduação em Medicina , Grupos Focais , Humanos
5.
Med Teach ; 43(1): 75-79, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-32336189

RESUMO

Independent learning refers to opportunities in which responsibility for learning shifts to learners. Providing health professions learners with independent learning opportunities can be challenging because of the often highly structured curricula of health professions education. Structured independent learning assignments that give learners the opportunity to begin developing the skills and strategies to take on self-directed opportunities in the future may lend themselves to these contexts. However, in health professions education contexts, few guidelines exist for designing effective assignments that foster independence in learning. These twelve tips provide recommendations for how to improve structured independent learning assignments for health professions learners and help them develop the skills and experience required for more self-directed opportunities and for lifelong learning.


Assuntos
Currículo , Aprendizagem , Competência Clínica , Ocupações em Saúde , Humanos , Modelos Educacionais
6.
Adv Health Sci Educ Theory Pract ; 25(5): 1087-1097, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-33123836

RESUMO

The contexts and methods for communicating in healthcare and health professions education (HPE) profoundly affect how we understand information, relate to others, and construct our identities. Multimodal analysis provides a method for exploring how we communicate using multiple modes-e.g., language, gestures, images-in concert with each other and within specific contexts. In this paper, we demonstrate how multimodal analysis helps us investigate the ways our communication practices shape healthcare and HPE. We provide an overview of the theoretical underpinnings, traditions, and methodologies of multimodal analysis. Then, we illustrate how to design and conduct a study using one particular approach to multimodal analysis, multimodal (inter)action analysis, using examples from a study focused on clinical reasoning and patient documentation. Finally, we suggest how multimodal analysis can be used to address a variety of HPE topics and contexts, highlighting the unique contributions multimodal analysis can offer to our field.


Assuntos
Comunicação , Ocupações em Saúde/educação , Médicos/psicologia , Projetos de Pesquisa , Mídias Sociais/organização & administração , Raciocínio Clínico , Humanos , Linguística , Comunicação não Verbal
7.
BMJ Open ; 10(10): e040989, 2020 10 26.
Artigo em Inglês | MEDLINE | ID: mdl-33109677

RESUMO

OBJECTIVE: The spread of misinformation has accompanied the coronavirus pandemic, including topics such as immune boosting to prevent COVID-19. This study explores how immune boosting is portrayed on the internet during the COVID-19 pandemic. DESIGN: Content analysis. METHODS: We compiled a dataset of 227 webpages from Google searches in Canada and the USA using the phrase 'boost immunity' AND 'coronavirus' on 1 April 2020. We coded webpages for typology and portrayal of immune boosting and supplements. We recorded mentions of microbiome, whether the webpage was selling or advertising an immune boosting product or service, and suggested strategies for boosting immunity. RESULTS: No significant differences were found between webpages that appeared in the searches in Canada and the USA. The most common types of webpages were from news (40.5%) and commercial (24.7%) websites. The concept of immune boosting was portrayed as beneficial for avoiding COVID-19 in 85.5% of webpages and supplements were portrayed as beneficial in 40% of the webpages, but commercial sites were more likely to have these portrayals. The top immune boosting strategies were vitamin C (34.8%), diet (34.4%), sleep (34.4%), exercise (30.8%) and zinc (26.9%). Less than 10% of the webpages provide any critique of the concept of immune boosting. CONCLUSIONS: Pairing evidence-based advice for maintaining one's health (eg, healthy diet, exercise, sleep) with the phrase immune boosting and strategies lacking in evidence may inadvertently help to legitimise the concept, making it a powerful marketing tool. Results demonstrate how the spread of misinformation is complex and often more subtle than blatant fraudulent claims.


Assuntos
Comunicação , Informação de Saúde ao Consumidor , Infecções por Coronavirus , Fatores Imunológicos , Imunoterapia , Internet , Marketing , Pandemias , Pneumonia Viral , Betacoronavirus , COVID-19 , Canadá/epidemiologia , Informação de Saúde ao Consumidor/métodos , Informação de Saúde ao Consumidor/normas , Infecções por Coronavirus/epidemiologia , Infecções por Coronavirus/imunologia , Infecções por Coronavirus/prevenção & controle , Confiabilidade dos Dados , Suplementos Nutricionais/normas , Humanos , Fatores Imunológicos/normas , Fatores Imunológicos/uso terapêutico , Imunoterapia/métodos , Imunoterapia/normas , Disseminação de Informação/ética , Disseminação de Informação/métodos , Internet/estatística & dados numéricos , Internet/tendências , Marketing/ética , Marketing/métodos , Pandemias/prevenção & controle , Pneumonia Viral/epidemiologia , Pneumonia Viral/imunologia , Pneumonia Viral/prevenção & controle , Saúde Pública , SARS-CoV-2 , Estados Unidos/epidemiologia
8.
PLoS One ; 12(8): e0182496, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28792974

RESUMO

Platelet Rich Plasma (PRP) has gained popularity in recent years for treating sports-related injuries and the news media frequently reports on elite athletes' and celebrities' use of PRP. We conducted a content analysis of newspaper coverage of PRP in Australia, Canada, Ireland, New Zealand, United Kingdom, and the United States. Findings show that news media coverage of PRP appears most frequently in sports-related stories, and in relation to elite athletes use of PRP. PRP injections are largely portrayed as a routine treatment for sports-related injuries and newspaper articles rarely discuss the limitations or efficacy of PRP. We argue that while news media coverage of PRP exhibits very few common hallmarks of hype, its portrayal as a routine treatment used by elite athletes and celebrities creates an implicit hype. This implicit hype can contribute to public misunderstandings of the efficacy of PRP.


Assuntos
Meios de Comunicação de Massa , Plasma Rico em Plaquetas , Atletas , Traumatismos em Atletas/terapia , Pessoas Famosas , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Jornais como Assunto , Resultado do Tratamento
10.
J Cyst Fibros ; 15(5): 624-9, 2016 09.
Artigo em Inglês | MEDLINE | ID: mdl-27150823

RESUMO

BACKGROUND: The cystic fibrosis drug, Kalydeco, has attracted attention both for its effectiveness in particular CF patients and its substantial price tag. An analysis of newspaper portrayals of Kalydeco provides an opportunity to examine how policy issues associated with rare diseases and orphan drugs are being represented in the popular press. METHODS: We conducted a content analysis of 203 newspaper articles in Canada and the U.S. that mention Kalydeco. Articles were analyzed for their main frame, discussion of Kalydeco, including issues of drug development, patient access, and reimbursement, and overall tone. RESULTS: In Canadian newspaper coverage, 77.4% of articles were framed as human interest stories featuring individual patients seeking public funding for Kalydeco, yet only 7.5% mentioned any budgetary limitations in doing so. In contrast, U.S. newspaper coverage was framed as a financial/economic story in 43.1% of articles and a medical/scientific story in 27.8%. CONCLUSIONS: Newspaper coverage varied significantly between Canada, where Kalydeco is predominantly a story about increasing patient access through full government funding, and the U.S., where Kalydeco is largely a financial story about the economic impact of Kalydeco. The difference in coverage may be due to differences in public funding between the healthcare systems of these two countries.


Assuntos
Aminofenóis , Fibrose Cística , Custos de Medicamentos , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Jornais como Assunto , Produção de Droga sem Interesse Comercial/economia , Quinolonas , Aminofenóis/economia , Aminofenóis/uso terapêutico , Canadá , Comparação Transcultural , Fibrose Cística/tratamento farmacológico , Fibrose Cística/economia , Humanos , Jornais como Assunto/estatística & dados numéricos , Quinolonas/economia , Quinolonas/uso terapêutico , Mecanismo de Reembolso/estatística & dados numéricos , Estados Unidos
11.
Artigo em Inglês | MEDLINE | ID: mdl-27227162

RESUMO

BACKGROUND: Former Detroit Red Wing Gordie Howe received stem cell (SC) treatment in Mexico in December 2014 for a stroke he suffered in October 2014. The news about his positive response to the SC treatment prompted discussion on social networks like Twitter. OBJECTIVE: This study aims to provide information about discussions that took place on Twitter regarding Howe's SC treatment and SC treatment in general. In particular, this study examines whether tweets portrayed a positive or negative attitude towards Howe's SC treatment, whether or not tweets mention that the treatment is unproven, and whether the tweets mention risks associated with the SC treatment. METHODS: This is an infodemiology study, harnessing big data published on the Internet for public health research and analysis of public engagement. A corpus of 2783 tweets about Howe's SC treatment was compiled using a program that collected English-language tweets from December 19, 2014 at 00:00 to February 7, 2015 at 00:00. A content analysis of the corpus was conducted using a coding framework developed through a two-stage process. RESULTS: 78.87% (2195/2783) of tweets mentioned improvements to Howe's health. Only one tweet explicitly mentioned that Howe's SC treatment was unproven, and 3 tweets warned that direct-to-consumer SC treatments lacked scientific evidence. In addition, 10.31% (287/2783) of tweets mentioned challenges with SC treatment that have been raised by scientists and researchers, and 3.70% (103/2783) of tweets either defined Howe as a "stem cell tourist" or claimed that his treatment was part of "stem cell tourism". In general, 71.79% (1998/2783) of tweets portrayed a positive attitude towards Howe's SC treatment. CONCLUSIONS: Our study found the responses to Howe's treatment on Twitter to be overwhelmingly positive. There was far less attention paid to the lack of scientific evidence regarding the efficacy of the treatment. Unbalanced and uncritical discussion on Twitter regarding SC treatments is another example of inaccurate representations of SC treatments that may create unrealistic expectations that will facilitate the market for unproven stem cell therapies.

12.
Orphanet J Rare Dis ; 10: 102, 2015 Aug 25.
Artigo em Inglês | MEDLINE | ID: mdl-26303029

RESUMO

BACKGROUND: Previous studies have demonstrated how the media has an influence on policy decisions and healthcare coverage. Studies of Canadian media have shown that news coverage often emphasizes and hypes certain aspects of high profile health debates. We hypothesized that in Canadian media coverage of access to healthcare issues about therapies and technologies including for rare diseases, the media would be largely sympathetic towards patients, thus adding to public debate that largely favors increased access to healthcare-even in the face of equivocal evidence regarding efficacy. METHODS: In order to test this hypothesis, we conducted a content analysis of 530 news articles about access to health therapies and technologies from 15 major Canadian newspapers over a 10-year period. Articles were analyzed for the perspectives presented in the articles and the types of reasons or arguments presented either for or against the particular access issue portrayed in the news articles. RESULTS: We found that news media coverage was largely sympathetic towards increasing healthcare funding and ease of access to healthcare (77.4 %). Rare diseases and orphan drugs were the most common issues raised (22.6 %). Patients perspectives were often highlighted in articles (42.3 %). 96.8 % of articles discussed why access to healthcare needs to increase, and discussion that questioned increased access was only included in 33.6 % articles. CONCLUSION: We found that news media favors a patient access ethos, which may contribute to a difficult policy-making environment.


Assuntos
Política de Saúde , Acessibilidade aos Serviços de Saúde , Jornais como Assunto , Canadá , Tomada de Decisões , Humanos , Cobertura do Seguro
13.
Stem Cell Rev Rep ; 11(5): 667-75, 2015 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-26163831

RESUMO

Stem cells continue to garner attention by the news media and play a role in public and policy discussions of emerging technologies. As new media platforms develop, it is important to understand how different news media represents emerging stem cell technologies and the role these play in public discussions. We conducted a comparative analysis of newspaper and sports websites coverage of one recent high profile case: Gordie Howe's stem cell treatment in Mexico. Using qualitative coding methods, we analyzed news articles and readers' comments from Canadian and US newspapers and sports websites. Results indicate that the efficacy of stem cell treatments is often assumed in news coverage and readers' comments indicate a public with a wide array of beliefs and perspectives on stem cells and their clinical efficacy. Media coverage that presents uncritical perspectives on unproven stem cell therapies may create patient expectations, may have an affect on policy discussions, and help to feed the marketing of unproven therapies. However, news coverage that provides more balanced or critical coverage of unproven stem cell treatments may also inspire more critical discussion, as reflected in readers' comments.


Assuntos
Bibliometria , Células-Tronco/fisiologia , Canadá , Humanos , Internet , México , Jornais como Assunto , Publicações Seriadas , Esportes , Estados Unidos
14.
Aesthet Surg J ; 35(6): 730-6, 2015 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-25922365

RESUMO

BACKGROUND: The hype surrounding stem cell science has created a market opportunity for the cosmetic industry. Cosmetic and anti-aging products and treatments that make claims regarding stem cell technology are increasingly popular, despite a lack of evidence for safety and efficacy of such products. OBJECTIVES: This study explores how stem cell-based products and services are portrayed to the public through online sources, in order to gain insight into the key messages available to consumers. METHODS: A content analysis of 100 web pages was conducted to examine the portrayals of stem cell-based cosmetic and anti-aging products and treatments. A qualitative discourse analysis of one web page further examined how language contributes to the portrayals of these products and treatments to public audiences. RESULTS: The majority of web pages portrayed stem cell-based products as ready for public use. Very few web pages substantiated claims with scientific evidence, and even fewer mentioned any risks or limitations associated with stem cell science. The discourse analysis revealed that the framing and use of metaphor obscures the certainty of the efficacy of and length of time for stem cell-based anti-aging technology to be publicly available. CONCLUSIONS: This study highlights the need to educate patients and the public on the current limits of stem cell applications in this context. In addition, generating scientific evidence for stem cell-based anti-aging and aesthetic applications is needed for optimizing benefits and minimizing adverse effects for the public. Having more evidence on efficacy and risks will help to protect patients who are eagerly seeking out these treatments.


Assuntos
Publicidade , Extratos Celulares/uso terapêutico , Técnicas Cosméticas , Internet , Marketing de Serviços de Saúde , Rejuvenescimento , Envelhecimento da Pele , Células-Tronco , Fatores Etários , Extratos Celulares/efeitos adversos , Informação de Saúde ao Consumidor , Técnicas Cosméticas/efeitos adversos , Medicina Baseada em Evidências , Humanos , Idioma , Opinião Pública , Medição de Risco , Fatores de Risco
15.
Stem Cell Reports ; 3(3): 379-84, 2014 Sep 09.
Artigo em Inglês | MEDLINE | ID: mdl-25241736

RESUMO

The growing international market for unproven stem cell-based interventions advertised on a direct-to-consumer basis over the internet ("stem cell tourism") is a source of concern because of the risks it presents to patients as well as their supporters, domestic health care systems, and the stem cell research field. Emerging responses such as public and health provider-focused education and national regulatory efforts are encouraging, but the market continues to grow. Physicians play a number of roles in the stem cell tourism market and, in many jurisdictions, are members of a regulated profession. In this article, we consider the use of professional regulation to address physician involvement in stem cell tourism. Although it is not without its limitations, professional regulation is a potentially valuable tool that can be employed in response to problematic types of physician involvement in the stem cell tourism market.


Assuntos
Internet , Turismo Médico/legislação & jurisprudência , Médicos/legislação & jurisprudência , Transplante de Células-Tronco/legislação & jurisprudência , Humanos
16.
Cell Stem Cell ; 15(3): 267-270, 2014 Sep 04.
Artigo em Inglês | MEDLINE | ID: mdl-25192461

RESUMO

Stem cell tourism describes the Internet-based industry where in patients receive unproven stem cell interventions. To better inform the public, several organizations provide educational material on stem cell therapies and tourism; however, an assessment of the currently available resources reveals a lack of comprehensive information, suggesting that further efforts are needed.


Assuntos
Educação , Células-Tronco/citologia , Humanos , Turismo Médico , Políticas , Transplante de Células-Tronco/ética , Pesquisa Translacional Biomédica
17.
BMJ Open ; 4(12): e006395, 2014 Dec 31.
Artigo em Inglês | MEDLINE | ID: mdl-25552612

RESUMO

OBJECTIVE: To examine the nature of media coverage of vitamin D in relation to its role in health and the need for supplements. DESIGN: Media content analysis. SETTING: Print articles from elite newspapers in the UK, the USA and Canada. PARTICIPANTS: 294 print newspaper articles appearing over 5 years (2009-2014). RESULTS: Newspaper coverage of vitamin D generally supported supplementation. The most common framing of vitamin D in print articles was "adequate vitamin D is necessary for good health." Articles also framed vitamin D as difficult to obtain from food supply and framed vitamin D deficiency as a widespread concern. In discussions of supplementation, 80% articles suggested supplementation is or may be necessary for the general population, yet almost none of the articles discussed the potential harms of vitamin D supplementation in any detail. Print articles named 40 different health conditions in relationship to vitamin D. The most commonly cited conditions included bone health, cancer and cardiovascular health. Although print articles referred to a wide range of scholarly research on vitamin D with varying degrees of endorsement for supplementation, a general tone of support for vitamin D supplementation in media coverage persisted. CONCLUSIONS: Newspaper articles conveyed overall support for vitamin D supplementation. News articles linked vitamin D to a wide range of health conditions for which there is no conclusive scientific evidence. Media coverage downplayed the limitations of existing science and overlooked any potential risks associated with supplementation.


Assuntos
Suplementos Nutricionais , Nível de Saúde , Jornais como Assunto , Vitamina D/administração & dosagem , Vitaminas/administração & dosagem , Canadá , Humanos , Jornais como Assunto/tendências
18.
Regen Med ; 8(3): 361-9, 2013 May.
Artigo em Inglês | MEDLINE | ID: mdl-23627829

RESUMO

AIM: To determine whether increased scrutiny of 'stem cell tourism' has resulted in changes to online claims by clinics that provide putative unproven stem cell treatments. MATERIALS & METHODS: We analyzed historical and current versions of clinics' websites. The study sample consisted of 18 websites included in a 2008 peer-reviewed study and an additional 12 clinics identified through the Google™ search engine. RESULTS: Our analysis revealed similarities between historical and current stem cell treatment offerings, claims, representations of risk, benefit and efficacy and attention to social, ethical and regulatory concerns. Claims and representations remain overly optimistic. Current websites provide more detailed descriptions of treatment procedures and outcomes and are more aesthetically appealing. Noteworthy trends in the movements and locations of clinics was observed. CONCLUSION: Increased scrutiny of stem cell tourism has not had much impact on the online claims of clinics that provide putative unproven stem cell treatments.


Assuntos
Participação da Comunidade , Transplante de Células-Tronco , Participação da Comunidade/economia , Humanos , Internet , Transplante de Células-Tronco/economia
19.
J Law Med Ethics ; 41(1): 254-68, 2013.
Artigo em Inglês | MEDLINE | ID: mdl-23581669

RESUMO

Stem cell tourism is a growing industry in which patients pursue unproven stem cell therapies for a wide variety of illnesses and conditions. It is a challenging market to regulate due to a number of factors including its international, online, direct-to-consumer approach. Calls to provide education and information to patients, their families, physicians, and the general public about the risks associated with stem cell tourism are mounting. Initial studies examining the perceptions of patients who have pursued stem cell tourism indicate many are highly critical of the research and regulatory systems in their home countries and believe them to be stagnant and unresponsive to patient needs. We suggest that educational material should include an explanation of the translational research process, in addition to other aspects of stem cell tourism, as one means to help promote greater understanding and, ideally, curb patient demand for unproven stem cell interventions. The material provided must stress that strong scientific research is required in order for therapies to be safe and have a greater chance at being effective. Through an analysis of educational material on stem cell tourism and translational stem cell research from patient groups and scientific societies, we describe essential elements that should be conveyed in educational material provided to patients. Although we support the broad dissemination of educational material on stem cell translational research, we also acknowledge that education may simply not be enough to engender patient and public trust in domestic research and regulatory systems. However, promoting patient autonomy by providing good quality information to patients so they can make better informed decisions is valuable in itself, irrespective of whether it serves as an effective deterrent of stem cell tourism.


Assuntos
Educação em Saúde , Turismo Médico , Transplante de Células-Tronco , Pesquisa Translacional Biomédica , Humanos
20.
BMC Med Genomics ; 6: 8, 2013 Mar 08.
Artigo em Inglês | MEDLINE | ID: mdl-23497701

RESUMO

BACKGROUND: Understanding the perception of patients on research ethics issues related to biobanking is important to enrich ethical discourse and help inform policy. METHODS: We examined the views of leukemia patients undergoing treatment in clinics located in the Princess Margaret Hospital in Toronto, Ontario, Canada. An initial written survey was provided to 100 patients (64.1% response rate) followed by a follow-up survey (62.5% response rate) covering the topics of informed consent, withdrawal, anonymity, incidental findings and the return of results, ownership, and trust. RESULTS: The majority (59.6%) preferred one-time consent, 30.3% desired a tiered consent approach that provides multiple options, and 10.1% preferred re-consent for future research. When asked different questions on re-consent, most (58%) reported that re-consent was a waste of time and money, but 51.7% indicated they would feel respected and involved if asked to re-consent. The majority of patients (62.2%) stated they had a right to withdraw their consent, but many changed their mind in the follow-up survey explaining that they should not have the right to withdraw consent. Nearly all of the patients (98%) desired being informed of incidental health findings and explained that the information was useful. Of these, 67.3% of patients preferred that researchers inform them and their doctors of the results. The majority of patients (62.2%) stated that the research institution owns the samples whereas 19.4% stated that the participants owned their samples. Patients had a great deal of trust in doctors, hospitals and government-funded university researchers, moderate levels of trust for provincial governments and industry-funded university researchers, and low levels of trust towards industry and insurance companies. CONCLUSIONS: Many cancer patients surveyed preferred a one-time consent although others desired some form of control. The majority of participants wanted a continuing right to withdraw consent and nearly all wanted to be informed of incidental findings related to their health. Patients had a great deal of trust in their medical professionals and publically-funded researchers as opposed to profit-based industries and insurance companies.


Assuntos
Bancos de Espécimes Biológicos , Ética em Pesquisa , Neoplasias/psicologia , Seguimentos , Humanos , Achados Incidentais , Consentimento Livre e Esclarecido , Percepção , Vigilância em Saúde Pública , Inquéritos e Questionários
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