SUPPORT-SYSTEMS (29) Reflections on the first week of our discussion

16 May, 2022

Dear all

Just a kind alert that this is a rather long message reflecting on the contributions from the past week.

Many thanks to Maria, Fatima, Joseph, Esha, Tarry, Goran, Richard and Neil for your contributions (I hope I haven’t missed any, in which case I hope Neil can correct me [*see note below]). As we transition into the second week, focusing on HIFA members lived experience with participating in health policy processes, I would like to highlight some key themes from the week that passed. I hope that examples people share in the coming week can further shed light on these themes as well as other key themes pertaining to what civil society participation in health policy processes actually mean and why it is important. Please do come in and correct/adjust if I have misinterpreted anything.

On “what does civil society participation in health policy mean” I would like to highlight these points:

- A key question touched upon especially by Esha, Tarry and Goran is “who” we mean when we use the term “civil society”. In the project we are especially interested in how civil society organizations and mechanisms for participation help promote views and interests of people in general and people who for some reason (like poverty or ethnicity) is marginalized, as compared with more defined professional interests of, for example, health professional associations or organizations focusing on specific issues. We have produced a brief description that I copy at the end, but are aware that making a distinction between CSOs representing “peoples’ interests” and CSOs representing more “defined” interests might not be so clear-cut. On this point, I read with great interest Goran’s reflection from the health system in Iraq, comparing the grassroots civil society organizations that are representative of a section (greater section?) of society but have limited access to decision-making and CSOs with more professional set-up, like those representing health care professionals that can use different sources of power. I’d like to add a short reflection from Norway, where I reside: here my impression is that most of CSO activity in health policy processes is probably from organizations representing different kind of patient groups, with some (e.g. those that represent larger group of patients and for which there is a lot of commercial activity on new drugs & technologies) having greater power and access than others.

On “why is it important”, I noted informed especially by Tarry, Goran and Joseph, while recognizing that this isn’t an exhaustive list and I hope people’s sharing of actual experiences can shed light on more

1. Improving equity by strengthening representation and voice of populations in poverty or otherwise marginalised but also directly providing services

2. Increasing demand for high-quality and well-managed services

3. In responding to the needs of populations, CSOs tend to work across sectors – addressing cross-cutting issues therefore need empowered CSOs

4. A crucial role in implementation of ideas and plans, especially with the view of reaching people – (thank you Joseph for sharing your example from the HIV Day event in Nigeria!)

5. A crucial role is played in monitoring, evaluation, tracking allocated resources and utilization

6. Strengthening the capacity of citizens – both in participating in processes but also directly contributing to addressing health care issues

7. Neil highlighted that there might be tensions between the valued outcomes of civil society participation, the way in which evidence is considered and presented and “optimal” health policymaking – a lot can be said here and hopefully more contributions in the coming week can shed light

Finally, in producing a systematic review on the question “How does civil society actors’ use of evidence contribute to inclusive and accountable decision-making for universal health coverage?”, I note several comments, especially from Esha, Maria, Foram and Tarry, pertaining to how the research question should be formulated and how data on this subject ought to be managed and interpreted:

- Empirical studies of the participation of civil society organizations in health policy processes will be from widely different political, economic and social context and these will be tackling widely different health challenges and similar health challenges may be understood and dealt with differently across settings. Moreover, the CSOs differ in mission and values, and these also differ in power like Goran underscored with concrete examples from Iraq How can a meaningful review be produced when insights are synthesized from across these settings and where interpretation cannot be divorced from understanding the social & political context in which participation took place and health policy was formulated (which might not be fully covered by the articles included in the review)? I don’t have the answer and I do think there is a limit to how well a systematic review of qualitative evidence can take account of context, but I’d think this is an area that need attention.

- From Richard and Joseph, I note the comments that a discussion of the role of civil society participation in health policy need to take account the influence of corporation that wield considerable power and influence over policy formulation

Thanks to everyone again and I look forward to the upcoming week where I hope people can share concrete examples they have been part of. [*see note below]

Best wishes


Civil society can operate to create space for promoting a wider range of people’s views and interests. Closely related to the latter are a set of concepts that are used interchangeably and are closely tied to civil society participation: “community engagement”; “community participation”; “citizen participation”; “civic engagement”; and “community mobilization” (1-3). With respect to health policy these concepts typically cover different ways of involving people more generally in decision-making about financing, organization and delivery of health services, often at a sub-national level. Mechanisms that give people an opportunity to express their views on UHC decisions can range from public consultations and hearings to locally formalized structures such as village or facility health committees (4-6). In assessing whether these mechanisms translate to genuine influence during health policy processes, the “ladder of participation” is helpful (7).

Understood this way, participation can involve: (1) manipulation and coercion; (2) consultations that represent tokenism; (3) consultations that create genuine space for civil society to express their views and that these views are heard and responded; (4) to mechanisms that delegate power and decision-making authority to civil society.

1. Abelson, J., & Gauvin, F. P. (2004). Engaging citizens: One route to health care accountability. Canadian Policy Research Networks Incorporated.

2. Oakley, Peter, and World Health Organization. Community involvement in health development: An examination of the critical issues. world health organization, 1989.

3. World Health Organization. "Voice, agency, empowerment: Handbook on social participation for universal health coverage." (2021).

4. Srivastava, Aradhana, et al. "Are village health sanitation and nutrition committees fulfilling their roles for decentralised health planning and action? A mixed methods study from rural eastern India." BMC Public Health 16.1 (2015): 1-12.

5. McCoy, David C., Jennifer A. Hall, and Melanie Ridge. "A systematic review of the literature for evidence on health facility committees in low-and middle-income countries." Health policy and planning 27.6 (2012): 449-466.

6. Kantamaturapoj, Kanang, et al. "Performance of Thailand’s universal health coverage scheme: Evaluating the effectiveness of annual public hearings." Health Expectations 23.6 (2020): 1594-1602.

7. Arnstein S. 1969. A ladder of citizen participation. Journal of the American Planning Association 35: 216–22.

HIFA profile: Unni Gopinathan is a Senior Scientist at Norwegian Institute of Public Health, Norway. Unni is joint coordinator of the HIFA working group on SUPPORT-SYSTEMS: How can decision-making processes for health systems strengthening and universal health coverage be made more inclusive, responsive and accountable?

Email: Unni.Gopinathan AT

[*Note from Neil PW HIFA moderator:

1. Thank you Unni, this is a great summary of the discussion so far and the list of contributors is complete up to and including 14 May, representing members in Croatia, Iraq, Nigeria, South Africa, UK and USA. We look forward to hear from other countries.

2. All: Please share your thoughts/experience by email to

3. Our guiding question for this week is Q2 Have you ever participated in health policy? All five questions here: You can comment on any question at any time, or indeed any aspect of civil society, evidence and health policy.]