Kerman University of Medical Sciences International Journal of Health Policy and Management 2322-5939 14 1 2025 12 01 Civil Society’s Evidence-Generating Role for Health Policy Decisions: A Thematic Analysis of a Healthcare Information for All (HIFA) Community Online Discussion 1 8 4750 10.34172/ijhpm.8701 EN Unni Gopinathan Cluster for Global Health, Division for Health Services, Norwegian Institute of Public Health, Oslo, Norway Centre for Epidemic Interventions Research, Division for Health Services, Norwegian Institute of Public Health, Oslo, Norway 0000-0002-7145-1461 Tarry Asoka Independent consultant, Port Harcourt, Nigeria María Eugenia Aponte-Rueda Venezuelan Breast Cancer Research and Education Foundation (FUVEICAM), Caracas, Bolivarian Republic of Venezuela Genevieve Cecilia Aryeteey School of Public Health, College of Health Sciences, University of Ghana, Accra, Ghana 0000-0002-0530-8675 Esha Ray Chaudhuri Independent Patient Advocate, Calgary, AB, Canada Meena Cherian Geneva Foundation for Medical Education & Research (GFMER), Geneva, Switzerland 0000-0003-2450-1638 Praveen Devarsetty George Institute for Global Health, Hyderabad, India Claire Glenton Department of Health and Functioning, Western Norway University of Applied Sciences, Bergen, Norway 0000-0002-7558-7737 Augustina Koduah School of Pharmacy, College of Health Sciences, University of Ghana, Accra, Ghana 0000-0001-9915-5333 Tripti Gupta External Consultant, National Health Systems Resource Centre, New Delhi, India Simon Lewin Department of Health Sciences Ålesund, Norwegian University of Science and Technology (NTNU), Ålesund, Norway 0000-0001-7521-9515 Jacinta Nzinga Health Economics Research Unit, KEMRI Wellcome Trust Research Programme, Nairobi, Kenya 0000-0001-8394-8857 Velisha Ann Perumal-Pillay Discipline of Pharmaceutical Sciences, School of Health Sciences, College of Health Sciences, University of KwaZulu-Natal, Durban, South Africa 0000-0002-4767-4139 Ravi Ram Madhira Institute, Nairobi, Kenya Fatima Suleman Discipline of Pharmaceutical Sciences, School of Health Sciences, University of KwaZulu-Natal (Westville Campus), Durban, South Africa 0000-0002-8559-9168 Goran Abdulla Zangana National Health Service (NHS) Lothian, Edinburgh, UK 0000-0002-1934-3121 Neil Martin Pakenham-Walsh Healthcare Information For All, Chipping Norton, UK Journal Article 2024 07 14 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.

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