Introduction. Clinical trials (CTs) are the footing foundation of evidence-based medicine. In Russia many aspects of CT implementation remain unexplored; one of them is the attitude of Russian society. Aims. This study aims to determine the knowledge and perception of CTs by potential participants. Analysis of the perception of CTs through the eyes of patients: CTs - is it a benefit or an unjustified risk? Materials. The primary method of research was a questionnaire. A total of 488 anonymous, voluntary surveys of patients from hospitals in Tomsk were studied. Results. More than half of the respondents heard about CTs, while the primary source of information was the media. The participants adequately assess the importance of conducting CTs to develop medicine and medical care for society. The primary goal of CTs is to determine the effectiveness and safety of drugs, and respondents regard their engagement as an opportunity to contribute to the development of science. The primary motivating factor in participating in CTs is receiving treatment for an incurable disease and observing conditions by a qualified doctor. The central negative aspect is the possibility of causing a risk to own health. The questionnaire demonstrated the need and importance of all points of informed consent. Several questions concerned the public attitude to researchers. According to patients, medical researchers arouse trust and confidence in altruistic motives during the CTs. Conclusion. This study revealed a low interest of Russians in participating in CTs, except for personal benefit. The behavior of the doctors, the ability to convey reliable information to the patient to adequately assess benefits and possible risks play an important role in deciding on the involvement of patients in the CTs. The results of this work will allow us to adapt the process of organizing CTs to the needs of patients in the local context.
The article discusses how the Russian patient organisations work on making patients’ needs, experiences, and grievances visible, acknowledged and used by state health governing officials and other experts. First, we present a health governance knowledge hierarchy that reflects different value assigned by healthcare governance actors to different knowledges. At the bottom of the identified hierarchy are the 'lay' experiences of individual patients, whereas policy-making knowledge ranks the highest. Each type of knowledge is distinguished from others with its own language, logic and, most importantly, material world and forms of action. We advance the two key arguments. First, patient organisations work to facilitate interaction between different actors and co-creation of health governance. Second, a crucial element of this work are organisational operational practices. Several major patient organisations are the key actors being recognised by state institutions. These organisations facilitate collaboration via project and event management, as well as aggregate 'lay' expertise-by-experience of their members and produce knowledge understandable and recognisable by decision-making actors. Methodologically, the article is based on the descriptive coding of available textual data of the key policy documents, legislation, methodological materials and other documents produced by the Russian patient organisations, as well as online ethnography of project activities, patient surveys, schools of patients and other knowledge disseminating vocational training, public council meetings, and other patient community engagement with state officials. In conclusion, the article summarises how Russian patient organisations strive to make their participation in health governance possible. They do so via reliance on organisational operational skills in maintaining collaborations with other actors, as well as wider knowledge production activities.
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