ABSTRACT
Background: The number of protocol-eligible patients, refusing to participate in a biomedical research is often not mentioned in the results of the studies. There are no studies that have looked at the data on willingness to participate in a research among pregnant women in India. The aim of this study is to report the number of pregnant women who refused to participate and to evaluate the reasons for not participating in a research that was concerned with swabbing of the genital tract for culture.Methods: A prospective research study was done among healthy pregnant women, that required collection of vaginal swabs for culture to study the vaginal flora. The women eligible to participate in the study were approached for their willingness to participate in the study. The details of women who refused to participate in the study and the various self-reported reasons for their refusal were documented and analysed.Results: A total 48.2% of the total protocol-eligible group refused to participate in the study and the refusal rate was alarmingly higher than expected. Some of the common responses for their refusal include reasons such as the study involved tests from their private parts, lack of interest to participate and the need to discuss with their partner or that their partner wound not allow them to participate in research.Conclusions: It is important for research studies to include data on the refusal to participate and also the reasons why people refuse to participate in research so as to formulate strategies to improve the acceptance rate for participation in research.
ABSTRACT
O artigo apresenta novas formas de atuação de grupos de pacientes durante as últimas décadas. Pacientes e/ou seus familiares fazem circular o conhecimento adquirido pela experiência com a doença em grupos de apoio, associações de pacientes e movimentos ativistas. Como resultado destas associações, surgem novos cenários na área da Saúde, como a incorporação das demandas do paciente nas políticas públicas de cuidado em saúde e a colaboração em esforços de pesquisa. O objetivo deste artigo é analisar, por meio de revisão de literatura, o papel da internet na constituição deste novo agente na área da saúde. Ele aborda igualmente um novo fenômeno, tornado possível com o advento da internet: a promoção de pesquisas por pacientes sem a participação do pesquisador especialista. Para nos auxiliar na análise destes cenários em saúde, nos servimos do conceito de biopoder.
The paper presents the new role played by patient groups over the last decades. Through the use of support groups, patient associations and activist movements, patients and/or their relatives share knowledge that has been acquired about specific illness. New scenarios arise in the field of Health derived from such associative forms, such as patients demands being incorporated into health care public policy as well as collaboration with research efforts. The present paper aims, using literature review, to analyze the role played by the internet in the constitution of this new actor in the field of health. It also addresses a new phenomenon, made possible by the Internet: the promotion of research by patients without the participation of expert researchers. The concept of biopower is employed as a framework to analyze these new health scenarios.
El artículo presenta nuevas formas de actuación de grupos de pacientes durante las últimas décadas. Pacientes y/o familiares hacen circular el conocimiento adquirido a partir de sus experiencias con la enfermedad en grupos de apoyo, asociaciones de pacientes y movimientos activistas. Como resultado de tales asociaciones, surgen nuevos escenarios en el área de Salud, como la incorporación de las demandas de los pacientes en políticas públicas de cuidado para la salud y la colaboración de los mismos con la investigación científica. El objetivo de este artículo es analizar, por medio de una revisión bibliográfica, el papel de internet en la constitución de este nuevo agente en el cuidado de la salud. El mismo aborda, igualmente, un nuevo fenómeno que se ha hecho posible gracias a internet: la promoción de la investigación por los pacientes sin la participación de investigadores expertos. Para un mejor análisis de estos escenarios de salud, nos valemos del concepto de biopoder.