Civil Society's Evidence-Generating Role for Health Policy Decisions: A Thematic Analysis of a Healthcare Information for All (HIFA) Community Online Discussion.
Gopinathan U., Asoka T., Aponte-Rueda ME., Aryeteey GC., Chaudhuri ER., Cherian M., Devarsetty P., Glenton C., Koduah A., Gupta T., Lewin S., Nzinga J., Perumal-Pillay VA., Ram R., Suleman F., Zangana GA., Pakenham-Walsh NM.
Civil society actors are widely recognized for advocating the public interest in health policy. However, their role in contributing different types of evidence to inform policy is less explored. To explore this topic, members of the Healthcare Information for All (HIFA) online forum and the Supporting Inclusive and Accountable Health Systems Decisions for Universal Health Coverage (SUPPORT-SYSTEMS) research project conducted a four-week online discussion. The discussion focused on defining civil society, its role in health policy, the types of evidence it provides, and how this evidence is used and valued. Weekly focal questions encouraged HIFA members to share experiences of civil society engagement and the use of evidence in health policy-making. The thematic analysis identified four key messages. First, defining civil society requires critical reflection, as actors differ significantly in their interests, political ties, and influence. These distinctions affect how representative their evidence is and whether it reflects vested interests. Second, policy-making structures can support meaningful civil society participation, thereby strengthening the use of evidence and the legitimacy of policy decisions. Third, civil society provides valuable local and tacit knowledge that complements scientific evidence, though safeguards are needed to prevent bias or misrepresentation. Fourth, political economy factors-such as power imbalances, gatekeeping, and funding constraints-shape the influence of civil society evidence on policy. Overall, the discussion highlighted the diverse roles civil society can play in health policy and the importance of institutional mechanisms to support responsible evidence use. Thematic discussions in communities of practice (CoPs) like HIFA offer a dynamic and inclusive approach to engaging stakeholder knowledge in research projects.