The role of NGOs in healthcare policy and the perspectives of patients’ movement development in Russia

Abstract

Patients’ Organisations remain an understudied aspect in the development and emergence of civil society in Russia. This is rather unsurprising given the lack of strong, coherent Patients’ Organisations in the country and the lack of common knowledge about their success in the improvement of healthcare performance in the West. In the article the key problems of interaction between patient organizations, government and business are examined in order to reveal general trends. This examination is provided on the basis of comparison between the Western practice of successful and functioning Patients’ Organisations and the current situation in Russia in regards to this area. Data is gathered from open sources such as legislation and reports, as well as media content. A large part of the reforms of healthcare systems relate to the necessity of creating legal mechanisms that allow patient groups to become involved in decision-making processes affecting health care. On the other hand, giving special powers to patient organizations raise difficult question regarding the level of their dependence on sponsors, who are, in the main, pharmaceutical companies that try to use patient groups for to promote and market their drugs (under the guise of educational programmes for the sick) and to apply pressure on governments in the issues of drug purchases through using the organisations as a lobbying force. What is revealed is the lack of an acceptable legal framework for regulating this in Russia and a serious lack of commitment in Patients’ Organisations and related NGOs to the very task they were created to fulfil. Patients’ Organisations and the influence of patients are seen to a vital part of the modernisation of healthcare and the fact that they are being held back is seen as a key problem. Much work remains to be done to encourage the growth of such organisations and to ensure that they provide transparency into the work they do.