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In this article, I apply the concept of solidarity to collective knowledge practices in healthcare. Generally, solidarity acknowledges that people are dependent on each other in many respects, and it captures those support practices that people engage in out of concern for others in whom they recognise a relevant similarity. Drawing on the rich literature on solidarity in bioethics and beyond, this article specifically discusses the role that epistemic solidarity can play in healthcare. It thus focuses, in particular, on solidarity's relationship with justice and injustice. In this regard, it is argued (1) that justice and solidarity are two equally important and complementary values that should both be considered in healthcare practices and institutions and (2) that solidarity often arises in unjust situations and can be a means to bring about justice. I transfer these 'general' insights about solidarity to knowledge practices in healthcare and link them to the discussion about epistemic injustices in healthcare and how to overcome them. I argue that epistemic solidarity can play an important role in overcoming epistemic injustices as well as-and independently from its contribution to justice-in knowledge production in medicine more generally. To demonstrate how epistemic solidarity can add to our understanding of collective knowledge practices, I discuss two examples: patients sharing their medical data for research purposes and healthcare professionals' engagement with patients to better understand their afflictions.
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Bioética , Justiça Social , Humanos , Atenção à Saúde , ConhecimentoRESUMO
BACKGROUND: In the Netherlands, human papillomavirus (HPV) vaccination uptake remains low. To improve informed decision making (IDM) and HPV vaccination acceptability, we systematically developed an interactive, web-based tailored intervention to which mothers of Dutch girls were invited to participate. OBJECTIVE: The aim of this study was to provide insight into the intervention's working mechanisms by evaluating (1) program use, (2) program acceptability, and (3) the relationship of program use with program acceptability and intervention effects (ie, dose-response relationship). METHODS: Only mothers from the intervention arm of a randomized controlled trial that assessed the effectiveness of the web-based, tailored intervention were included in this study. They were invited to visit the website of the web-based intervention between baseline (January 2015, just before access to the intervention) and follow up (March 2015, prior to the first HPV vaccination). Indicators for program use were time of website use (ie, duration of intervention exposure) and completeness (ie, proportion of all available web pages visited). HPV vaccination uptake registered by Praeventis was used as the primary outcome. Secondary outcomes were IDM, decisional conflict, and social-psychological determinants of HPV vaccination uptake. RESULTS: Among the 3995 invited mothers, 2509 (62.80%) logged on to the website, 2239 of whom (89.24%) visited at least one page of the intervention components. On average, mothers spent 21.39 minutes (SD 12.41) on the website and completed 50.04% (SD 26.18%) of the website components. Participants rated the website 7.64 (SD 1.39) on a 10-point scale. Program acceptability was significantly associated with completeness (ß=4.36, P<.001), but not with time of website use (ß=-.07, P=.77). Intention-to-treat analysis (N=3995) showed a significant positive effect of completeness on all outcome measures (all P<.003; Bonferroni-corrected α=.05/15 factors), including on HPV vaccination uptake. Time of website use had a significant positive effect on all outcomes (all P<.003), except for uptake (P=.20), risk perception when not vaccinated (P=.14), subjective norms (P=.03), and habit (P=.01). CONCLUSIONS: Program use and acceptability of the intervention were adequate. Completeness was positively associated with acceptability. Furthermore, positive effects (ie, dose-response effects) were found for completeness and time of website use on the mothers' IDM, decisional conflict, and almost all of the social-psychological determinants of HPV vaccination acceptability. In addition, the extent to which mothers completed the intervention had a positive impact on their daughters' vaccination uptake. This indicates that the web-based, tailored intervention fits well with the mothers' needs, and that completeness of use is essential for improving HPV vaccination uptake, acceptability, and IDM. Program use should therefore be promoted. TRIAL REGISTRATION: Netherlands Trial Register NTR4795; https://www.trialregister.nl/trial/4795.
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Intervenção Baseada em Internet/tendências , Infecções por Papillomavirus/prevenção & controle , Vacinação/métodos , Adulto , Relação Dose-Resposta a Droga , Feminino , Humanos , Inquéritos e QuestionáriosRESUMO
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BACKGROUND: In the Netherlands, HPV-vaccination uptake among 12-year-old girls remains to be lower (61% in 2016) than expected. The present study is about 1) replicating the extent to which social-psychological determinants found in earlier cross-sectional studies explain HPV-vaccination intention, and 2) testing whether HPV-vaccination intention, as well as other social-psychological determinants, are good predictors of future HPV-vaccination uptake in a longitudinal design. METHODS: A random sample of mothers of girls invited for the vaccination in 2015 was drawn from the Dutch vaccination register (Praeventis) (N=36,000) and from three online panels (N=2483). Two months prior to the vaccination of girls, their mothers were requested to complete a web-based questionnaire by letter (Praeventis sample) or by e-mail (panel samples). HPV-vaccination uptake was derived from Praeventis. Backward linear and logistic regression analyses were conducted to examine most dominant predictors of HPV-vaccination intention and uptake, respectively. The total sample used for data analyses consisted of 8062 mothers. Response rates were 18% for the Praeventis sample and 47% for the panel samples. RESULTS: HPV-vaccination intention was best explained by attitude, beliefs, subjective norms, habit, and perceived relative effectiveness of the vaccination; they explained 83% of the variance in HPV-vaccination intention. Intention appeared to be the only stable predictor of HPV-vaccination uptake and explained 43% of the variance in HPV-vaccination uptake. CONCLUSIONS: These results confirm what was found by earlier cross-sectional studies, and provide strong leads for selecting relevant targets in the planning of future communication strategies aiming to improve HPV-vaccination uptake.
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Mães , Motivação , Infecções por Papillomavirus/prevenção & controle , Vacinas contra Papillomavirus/administração & dosagem , Adolescente , Adulto , Feminino , Humanos , Intenção , Estudos Longitudinais , Mães/psicologia , Mães/estatística & dados numéricos , Países Baixos , Núcleo Familiar , Inquéritos e Questionários , Vacinação/psicologiaRESUMO
BACKGROUND: In 2010, the human papillomavirus (HPV) vaccination was introduced in the Dutch National Immunization Program for 12-year-old girls, aiming to reduce the incidence of cervical cancer in women. HPV vaccination uptake turned out to be lower than expected: 61% versus 70%, respectively. Mothers were shown to play the most important role in the immunization decision about this vaccination. They had also expressed their need for interactive personal information about the HPV vaccination over and above the existing universal general information. To improve the effectiveness of the existing education about the HPV vaccination, we systematically developed a Web-based tailored intervention with virtual assistants providing mothers of girls to be invited with tailored feedback on their decision making about the HPV vaccination. OBJECTIVE: The aim of this study was to evaluate the effectiveness of the Web-based tailored intervention for promoting HPV vaccination acceptance by means of a randomized controlled trial (RCT). METHODS: Mothers were recruited via the Dutch vaccination register (Praeventis) (n=36,000) and three Web-based panels (n=2483). Those who gave informed consent (N=8062) were randomly assigned to the control (n=4067) or intervention condition (n=3995). HPV vaccination uptake, as registered by Praeventis once the HPV vaccination round was completed, was used as the primary outcome. Secondary outcomes were differential scores across conditions between baseline (before the provided access to the new tailored intervention) and follow-up (just before the first vaccination) regarding the mothers' degree of informed decision making (IDM), decisional conflict, and critical determinants of HPV vaccination uptake among which are intention, attitude, risk perception, and outcome beliefs. RESULTS: Intention-to-treat analysis (N=8062) showed a significant positive effect of the intervention on IDM, decisional conflict, and nearly all determinants of HPV vaccination uptake (P<.001). No effect was found on uptake (P=.60). This may be attributed to the overall high uptake rates in both conditions. Mothers evaluated the intervention as highly positive, including the website as well as the virtual assistants that were used to deliver the tailored feedback. CONCLUSIONS: This computer-tailored intervention has the potential to improve HPV vaccination acceptability and IDM and to decrease decisional conflict among mothers of invited girls. Implications for future research are discussed. TRIAL REGISTRATION: Trialregister.nl NTR4935; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=4935 (Archived by WebCite at http://www.webcitation.org/6srT7l9EM).
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Promoção da Saúde/métodos , Imunização/métodos , Internet/estatística & dados numéricos , Infecções por Papillomavirus/terapia , Vacinação/métodos , Adulto , Criança , Feminino , Humanos , Pessoa de Meia-Idade , Mães , Inquéritos e QuestionáriosRESUMO
Visions of precision or personalized medicine (PM) are gaining currency around the globe. While the potential of PM in specialist medicine has been in focus, primary care is also considered to be a fruitful area for the application of PM. "Low-tech" forms of personalization and attention to individual patients are already central features of primary care practice, and primary care thus constitutes an area in which "old" and "new" forms of personalization (may) come together. Against this backdrop, we explore general practitioners' (GPs) views on PM and how they envision the future of personalization in primary care. We draw on 45 qualitative interviews with GPs from Austria, Denmark, and the United States. Along the lines of major "promises" of PM-tailoring treatment decisions, improving disease prevention, empowering patients-we show that in some areas GPs consider PM to be a continuation or extension of existing practices of personalization, while in other cases, GPs envision that PM may negatively disrupt current forms of personalization in primary care. We suggest that this ambivalent stance towards PM can be understood through the lens of GPs' views on core values and practices of primary care.
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Clínicos Gerais , Medicina de Precisão , Atenção Primária à Saúde , Pesquisa Qualitativa , Humanos , Medicina de Precisão/métodos , Clínicos Gerais/psicologia , Dinamarca , Áustria , Estados Unidos , Masculino , Feminino , Atitude do Pessoal de Saúde , Pessoa de Meia-Idade , AdultoRESUMO
Payment reforms are frequently implemented alongside service delivery reforms, thus rendering it difficult to disentangle their impact. This scoping review aims to link alternative payment arrangements within their context of service delivery, to assess their impact on quality of chronic care, and to disentangle, where possible, the impact of payment reforms from changes to service delivery. A search of literature published between 2013 and 2022 resulted in 34 relevant articles across five types of payment models: capitation/global budget (n = 13), pay-for-coordination (n = 10), shared savings/shared risk (n = 6), blended capitation (n = 3), and bundled payments (n = 1). The certainty of evidence was generally low due to biases associated with voluntary participation in reforms. This scoping review finds that population-based payment reforms are better suited for collaborative, person-centred approaches of service delivery spanning settings and providers, but also highlights the need for a wider evidence base of studies disentangling the impact of financing from service delivery reforms. Limited evidence disentangling the two suggests that transforming service delivery to a team-based model of care alongside a purchasing reform shifting to blended capitation was more impactful in improving quality of chronic care, than the individual components of payment and service delivery. Further comparative studies employing causal inference methods, accounting for biases and quantifying aspects of service delivery, are needed to better disentangle the mechanisms impacting quality of care.
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Orçamentos , Assistência de Longa Duração , HumanosRESUMO
The sudden and dramatic advent of the COVID-19 pandemic led to urgent demands for timely, relevant, yet rigorous research. This paper discusses the origin, design, and execution of the SolPan research commons, a large-scale, international, comparative, qualitative research project that sought to respond to the need for knowledge among researchers and policymakers in times of crisis. The form of organization as a research commons is characterized by an underlying solidaristic attitude of its members and its intrinsic organizational features in which research data and knowledge in the study is shared and jointly owned. As such, the project is peer-governed, rooted in (idealist) social values of academia, and aims at providing tools and benefits for its members. In this paper, we discuss challenges and solutions for qualitative studies that seek to operate as research commons.
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The application of machine learning (ML) technologies in medicine generally but also in radiology more specifically is hoped to improve clinical processes and the provision of healthcare. A central motivation in this regard is to advance patient treatment by reducing human error and increasing the accuracy of prognosis, diagnosis and therapy decisions. There is, however, also increasing awareness about bias in ML technologies and its potentially harmful consequences. Biases refer to systematic distortions of datasets, algorithms, or human decision making. These systematic distortions are understood to have negative effects on the quality of an outcome in terms of accuracy, fairness, or transparency. But biases are not only a technical problem that requires a technical solution. Because they often also have a social dimension, the 'distorted' outcomes they yield often have implications for equity. This paper assesses different types of biases that can emerge within applications of ML in radiology, and discusses in what cases such biases are problematic. Drawing upon theories of equity in healthcare, we argue that while some biases are harmful and should be acted upon, others might be unproblematic and even desirable-exactly because they can contribute to overcome inequities.
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Wearing face masks is recommended as part of personal protective equipment and as a public health measure to prevent the spread of coronavirus disease 2019 (COVID-19) pandemic. Their use, however, is deeply connected to social and cultural practices and has acquired a variety of personal and social meanings. This article aims to identify the diversity of sociocultural, ethical, and political meanings attributed to face masks, how they might impact public health policies, and how they should be considered in health communication. In May 2020, we involved 29 experts of an interdisciplinary research network on health and society to provide their testimonies on the use of face masks in 20 European and 2 Asian countries (China and South Korea). They reflected on regulations in the corresponding jurisdictions as well as the personal and social aspects of face mask wearing. We analyzed those testimonies thematically, employing the method of qualitative descriptive analysis. The analysis framed the four dimensions of the societal and personal practices of wearing (or not wearing) face masks: individual perceptions of infection risk, personal interpretations of responsibility and solidarity, cultural traditions and religious imprinting, and the need of expressing self-identity. Our study points to the importance for an in-depth understanding of the cultural and sociopolitical considerations around the personal and social meaning of mask wearing in different contexts as a necessary prerequisite for the assessment of the effectiveness of face masks as a public health measure. Improving the personal and collective understanding of citizens' behaviors and attitudes appears essential for designing more effective health communications about COVID-19 pandemic or other global crises in the future. To wear a face mask or not to wear a face mask? Nowadays, this question has been analogous to the famous line from Shakespeare's Hamlet: "To be or not to be, that is the question." This is a bit allegorical, but certainly not far from the current circumstances where a deadly virus is spreading amongst us... Vanja Kopilas, Croatia.
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COVID-19/prevenção & controle , COVID-19/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Máscaras/estatística & dados numéricos , Pandemias/prevenção & controle , Equipamento de Proteção Individual/estatística & dados numéricos , Opinião Pública , Adulto , Idoso , Idoso de 80 Anos ou mais , Atitude Frente a Saúde , Europa (Continente) , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , SARS-CoV-2RESUMO
Background: Currently, the eHealth field calls for detailed descriptions of theory-based interventions in order to support improved design of such interventions. This article aims to provide a systematic description of the design rationale behind an interactive web-based tailored intervention promoting HPV-vaccination acceptability. Methods: The 6-step Intervention Mapping (IM) protocol was used to describe the design rationale. After the needs assessment in Step 1, intervention objectives were formulated in Step 2. In Step 3, we translated theoretical methods into practical applications, which were integrated into a coherent intervention in Step 4. In Step 5, we anticipated future implementation and adoption, and finally, an evaluation plan was generated in Step 6. Results: Walking through the various steps of IM resulted in a detailed description of the intervention. The needs assessment indicated HPV-vaccination uptake remaining lower than expected. Mothers play the most important role in decision-making about their daughter's immunization. However, they generally feel ambivalent after they made their decisions, and their decisions are based on rather unstable grounds. Therefore, intervention objectives were to improve HPV-vaccination uptake and informed decision-making, and to decrease decisional conflict among mothers of invited girls. Computer-tailoring was chosen as the main method; virtual assistants were chosen as a practical application to deliver interactive tailored feedback. To maximize compatibility with the needs of the target group, a user-centered design strategy by means of focus groups and online experiments was applied. In these, prototypes were tested and sequentially refined. Finally, efficacy, effectiveness, and acceptability of the intervention were tested in a randomized controlled trial. Results showed a significant positive effect of the intervention on informed decision-making, decisional conflict, and nearly all determinants of HPV-vaccination uptake (P < 0.001). Mothers evaluated the intervention as highly positive. Discussion: Using IM led to an innovative effective intervention for promoting HPV-vaccination acceptability. The intervention maps will aid in interpreting the results of our evaluation studies. Moreover, it will ease the comparison of design rationales across interventions, and may provide leads for the development of other eHealth interventions. This paper adds to the plea for systematic reporting of design rationales constituting the process of developing interventions.