Background

In 2018, STOPAIDS, Aidsfonds, Frontline AIDS, & Civil Society Sustainability Network (CSSN) developed a paper on the future of the global health architecture, exploring top-line political trends affecting global health and proposing key principles to consider as the architecture adapts to a changing world. In 2020 the working group published ‘HIV, Universal Health Coverage, and the Future of the Global Health Architecture: A civil society discussion paper on key trends and principles for evolution1‘. The report sought to collate some of the experiences of the HIV movement and suggest what lessons and principles might be taken forward and built on to guide the development of the global health architecture going forward. Drawing on years of established practice across the majority of the largest global health multilaterals, the report outlined 3 key principles for civil society and community engagement in global health governance:

  1. Ensure permanent community and civil society constituencies at the governance level, which can feed up to dedicated Board Members
  2. Grant permanent voting power to civil society & communities across the global health architecture
  3. Fund civil society & community representatives’ engagement on Boards and with constituents

Building on the Principles described in the paper, the authors held a global and a regional Latin American webinar in 2020 to engage broader civil society and community actors to discuss and develop the suggested Principles. In parallel there have been several opportunities that have enabled the Principles to be implemented – in particular the creation of the Access to Covid Technologies (ACT) – Accelerator. 

This document is the result of this work along with further consultations held throughout 2022. The consultations in 2022 took the form of:

  1.  An online survey 

51 responses were received to a survey which aimed to hear from civil society and communities on what they feel, in their experience, makes good or poor practice of meaningful involvement in global health governance. Most responses came from civil society organisations, with those representing Networks of key and marginalised populations making up 47% of the total responses.

In the online survey, the majority of participants in both the webinar and survey were from civil society organisations. For the survey, 24 people or 47% of respondents were from a network representing key populations or people living with HIV. Eleven –  or 21% were from a civil society organisation, and 6 or 11% were from an international or regional CSO. 13% or 7 people were community leaders representing marginalised people. 1 Donor, 1 consultant and 1 private sector representative completed the survey. Most survey respondents were living with HIV (28 of 51 participants). Webinar participants were from civil society organisations, with most having some experience of global health governance processes.

  1. Webinar & IAS Event

14 people attended the webinar held on the 1st of September 2022. The attendees included representatives from: the Developing Country NGO Delegation Global Fund Board, UNAIDS NGO Delegation to the Programme Coordinating Board; African Civil Society Platform on Health; Stop TB Partnership Board member representing the Developing Country Delegation; Global Network MPACT, 

C. Consultation with civil society and community delegation representatives 

In addition, a good practice scan was undertaken, using desktop research to find good practice guidelines developed by civil society and communities (within and outside of the health sector), and followed up with some conversations with individuals involved in similar endeavours. 

Finally, recognising the limitations of these consultations, they are by no means exhaustive as there will continue to be opportunities for further consultations, including across other sectors such as climate and education, to ensure the principles incorporate lessons learned on good and poor practice examples of the meaningful involvement of communities and civil society. However, as aforementioned, this document is intended to be continually amended and adapted over time. 

Summary of Consultations

Both the online survey and webinar demonstrated that many community representatives and CSO’s felt tokenised and exploited in their engagements in global health governance. Despite this, most participants still felt it was important to engage in global health governance processes, and that there is a benefit for communities in doing so. While participants did share examples of good practice, these were marked by their own challenges.

Referencing the ladder of participation (by S Arnstein2) where participation can be seen as rungs on a ladder, with the lower rungs being non-participation, the middle rungs being based on tokenism and the higher rungs marked by citizen power – or real participation and a real share in decision making. All the rungs in the ladder were described in the webinar and survey. 

“Being told what is needed instead of asked, being imposed upon and what makes this bad is feeling uncomfortable, feeling time is wasted if the participation does not serve the interests of the community I represent and this implies that my input / participation is token rather than an opportunity to contribute a perspective that could advance collective action.” (Network member)

It was clear that in some spaces involvement comes with no decision-making or influencing power and where the objective of the involvement is rather to extract information and expertise from representatives rather than offering a real opportunity to achieve reform or make significant changes in global health governance. In the original Ladder of Participation, the ‘information’ rung was characterised by efforts to educate or inform in a one-way flow of information. The survey found that while this did happen, the reverse was also true – that representatives were used for their expertise and knowledge of their communities, but that this contribution was unrewarded by acknowledgment or access to decision-making power. 

In other cases, the full extent of their participation is focused on consultation only, and was short-lived with no processes for feedback, no mechanisms for follow-up and no real obligation to take into account what people have said. 

In both these examples, the involvement met the needs of those in power but did not meet the needs of CSO’s or communities and, some said, exploited their connections to communities, and their position as leaders and wasted their time. 

“there are many examples where input is asked and later on there is no information given what has been done with the input or how it influenced or not the actual decision making” (Donor organisation, LGBTI person)

CSO and community representatives shared that it was common for them to only be included in later stages in the process when decisions had already taken place and the time for influencing may have already passed with their ‘engagement’ limited to how the decisions would be implemented. In others, their voices are highly curated with their input being limited to specific issues or only in response to pre-determined questions. While this takes a significant amount of time and resources from CSO’s and community representatives and communities themselves, their efforts do not result in any significant change in policy or approach but rather add legitimacy to decisions made often without their input. Consultations have their place, but not in the guise of participation. 

Some pointed out spaces that were consistent with descriptions of the ‘therapy’ rung – in which communities were asked to share their experiences or life stories only, as a kind of reflection of the good works of the power holders or to advocate for support and attention for the process being discussed. 

“I was once in a meeting where I wasn’t told what it was about. It was very technical, I heard nothing that was discussed I was there just to make people mark their own register and posts” (Network member, person living with HIV)

“Bad participation looks like including trans people living with HIV in HIV advocacy spaces without there being any sensitivity or cultural training to the cisgender people in attendance and it results in trans people being harmed and also trans people having to apologise for calling out the harm done.” (community leader, PLHIV)

“being sidelined or ignored by Board chairs or the secretariat staff; the organisation trying to limit or choose themselves the civil society and community representatives; no time or funding to support participation and consultation”  (International or regional organisation NGO)

In positive cases, participants pointed to spaces characterised by formal and ongoing mechanisms where CSOs and community representatives have some influence. These spaces are characterised by a partnership approach, where influence is possible and visible and where accountability and decision making is shared. Transparency was also highlighted as an element in good practice, where clarity on who is involved, how decisions are made and what the potential impact of their participation could be. 

What does meaningful involvement look like?

“It means opportunities to inform decisions, not just being called to talk but to give ideas and when necessary say no” Community leader, representing marginalised populations

The characteristics survey participants shared for good involvement were:

“having big ears, eyes and heart when dealing with people especially the most affected” Community leader, representing marginalised populations

Examples of poor involvement

To best understand what meaningful involvement looks like, it is helpful to first outline what meaningful involvement has previously and should not look like by highlighting regrettably common examples of poor practice in global health governance. Some examples include; 

5 Principles for the Meaningful Involvement of Communities and Civil Society in Global Health Governance have been developed, each accompanied by good practice examples to demonstrate how institutions can learn from each other to support and strengthen their relationship with communities and civil society. These Principles start with a focus on those institutions that are already multi-stakeholder partnerships given that civil society and community involvement has already been actualised in many of these institutions. As noted above, there are also numerous institutions whose mandate and structure does not currently allow inclusion of seats and votes for civil society and communities and so their first step should be to review their governance structure to be more inclusive of civil society and communities. This is true, for example, of the United Nations institutions although it should be noted that UNAIDS, as the first UN programme to have civil society representation on its governing board, is a good example of how UN bodies do not inherently have to exclude civil society and the benefits of having their voice at the table. 

Crucially, for these Principles to be meaningful in and of themselves, when developing them it was essential to take an anti-oppressive analysis which takes into account the need for decolonisation in global health and an anti-racist approach. These Principles take an intersectional approach to ensuring gender equality and feminism, sexual diversity are reflected. This is all crucial in the deeply concerning context of increasing crackdowns on LGBTQIA+ rights encouraging global health institutions to also consider how they are supporting and creating space for the voices of all key populations and vulnerable groups in this environment. Other vulnerable groups or most affected persons to consider in terms of equitable representation include the youth, the elderly, persons with disabilities, migrants (documented and undocumented), refugees, and displaced persons. Moreover, it should be recognised that the involvement of civil society as opposed to communities is also not the same, with communities often facing greater barriers to meaningful inclusion. 

Language & Definitions

It is important to note that in these principles a distinction is made between communities and civil society to recognise their distinct roles and contributions, whilst recognising that the two can evidently complement and often work closely together to promote accountability, culturally sensitive interventions and sustainable progress in global health. The distinction between the two is also crucial given the additional obstacles many communities face in global health decision making spaces which are often not the same for civil society. 

Communities 

Community is a widely used catch-all term that has no single or fixed definition. Broadly, communities are formed by people who are connected to each other in distinct and varied ways. Communities are diverse and dynamic. One person may be part of more than one community. Community members may be connected by living in the same area – or by shared experiences, health and other challenges, living situations, culture, religion, identity or values3. In these Principles,  communities can also refer to those affected by health issues which the global health institutions address. 

Civil Society 

Civil society organisations (CSOs) or non-governmental organisations (NGOs) are understood as “any non-profit [or] voluntary citizens’ group which is organised on a local, national or international level4.”  

Global Health Governance 

Global Health Governance is typically defined as “the use of formal and informal institutions, rules, and processes by states, intergovernmental organisations, and non-state actors to deal with challenges to health that require cross-border collective action to address effectively5.”

Global Health Institutions  

For the purposes of these principles, which are intended to focus specifically on the governance level of the specific global health institutions, the institutions which are the focus of the principles are; The Global Fund to Fight AIDS, Tuberculosis and Malaria, Unitaid, The Global Financing Facility (GFF), Stop TB Partnership, Gavi, the Vaccine Alliance and UNAIDS. 

Meaningful Involvement & Participation 

Throughout the process of developing these Principles, there has been discussions on the language used to articulate what is meant by ensuring that civil society and communities have more equal power in governance bodies. Terms including co-creation, engagement, participation and involvement were discussed. However, to emphasise the need for active participation in governance structures the term involvement was agreed on. The aim of these principles is to ensure civil society and communities have genuine influence and not merely a tokenstic voice in decision making spaces. The term engagement has been used in the context of HIV but, for the purposes of these Principles, we have chosen to refer to the meaningful involvement and participation of civil society and communities in global health governance as we believe the terms ‘involvement’ and ‘participation’ go beyond the mere, bare minimum engagement required to have a strong and inclusive governance structure. 

Equity 

The term equitable representation, as opposed to equal representation, is used to reflect the need to go beyond equality to ensure equity, which addresses relevant, underlying inequalities. This is essential to address in the context of global health governance where some communities, or civil society groups or representatives often require more resources and support in order to meaningfully participate in decision making spaces, due to historical or systemic disparities. 

Diversity 

The term diversity is used to stress the need to include and represent a variety of individuals with different identities, perspectives and experiences (this includes, but is not limited to; race, ethnicity, age, gender identity, sexual identity/ orientation, socioeconomic status, documented status, and abilities). However, in recognising the way in which this term has been tokenistically employed and overused the use of the word throughout this document is done with the intention that it continues to have meaning. Therefore to avoid tokenism, diversity in this context means the active promotion of tangible actions which will allow for truly inclusive and equitable representation in global health governance. The aim is to encourage the selection of genuinely diverse voices amongst community and civil society representatives. 

The Taskforce

The principles taskforce members:

  1. https://stopaids.org.uk/wp-content/uploads/2020/01/HIV-Universal-Health-Coverage-and-the-future-of-the-global-health-architecture.pdf ↩︎
  2. Carissa Schively Slotterback & Mickey Lauria (2019) Building a Foundation for Public Engagement in Planning, Journal of the American Planning Association, 85:3, 183-187, DOI: 10.1080/01944363.2019.1616985 ↩︎
  3. HIV, Universal Health Coverage, and the future of the global health architecture (page 10) ↩︎
  4. https://www.un.org/en/civil-society/page/about-us ↩︎
  5. Kheir-Mataria WA, El-Fawal H, Bhuiyan S, Chun S. Global Health Governance and Health Equity in the Context of COVID-19: A Scoping Review. InHealthcare 2022 Mar 15 (Vol. 10, No. 3, p. 540). MDPI ↩︎
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