Periodic Reporting for period 2 - InPart (Public participation by other means? Informal practices to engage with matters of collective concern in non-democratic settings)
Periodo di rendicontazione: 2022-07-01 al 2023-12-31
How to ensure meaningful public participation in governing matters of collective concern? With the growth of distrust and alienation between citizens and established political institutions, it urgent to improve democracy by finding new ways of involving citizens in decisions that shape their lives. This project looks for new modes of public participation in informal practices creatively employed by citizens to contest governance arrangements, especially in settings where they are discouraged from doing so. Scholarship traditionally defines public participation as dependent on making issues public, i.e. visible and debatable, whereas informality is considered dysfunctional and anomic, not least to democracy itself. Therefore, informal practices that involve working around formal procedures and public spaces, and depend on remaining invisible, have not been explored as modes of public participation. The InPart studies public participation by means of informal practices. It aims to show how informality mediates participation in health (healthcare provision and drug development); elicit the effects of this mediation; and elaborate the theoretical significance of conceptualising certain informal practices as forms of public participation.
This investigation started from studying instances of more formally sanctioned, pre-organized and top-down participation to subsequently compare instances of more informal participation with. The project team studied how participation of patients in health governance is organized in Russia and has demonstrated how patient organizations manage to insert patients’ concerns and priorities into agendas, discussions and decisions despite the tight control exercised over them and their actions. The InPart team also studied how patient participation in drug developed is configured by the global pharmaceutical industry and showed that the standards and frameworks promoted to this end may lead to novel inequalities between patients where only the few of them considered most knowledgeable would end up repeatedly engaged to the exclusion of all others. These two nearly completed case studies provide a basis against which less scripted and more bottom-up participatory arrangements will be compared. The project team has begun investigation of do-it-yourself drug development collectives who operate on the margins of society and legislation in order to study specificities of the participatory arrangements of the latter kind.
The InPart project has made a significant contribution into understanding a number of issues. The first issue is how patient engagement in drug development is being shaped currently. This is a recent phenomenon, and the project produced the first systematic and critical investigation of its emergence and societal implications. The second issue is operation of patient organizations in environments not conducive to their participation in health governance. More broadly, investigation of this issue contributes into our understanding of how public participation is possible in nondemocratic situations. This contribution is important because most studies of participation today focus on public participation that takes place in situations of democracy and little attention has been devoted to what is happening in this sense in nondemocracies. Finally, all these empirical investigations have allowed the InPart to progress in rethinking public participation itself and theorize participation beyond its most researched and widely considered forms that are talk-based and are explicitly designated as political and participatory. Currently work is underway to further develop and test a notion of participation that would account for mundane non-heroic acts that are not necessarily considered explicitly political but nonetheless affect matters of collective concern and, thus, are participatory.