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Engaging citizens: Lessons from buildingBrazil’s national health system

Andrea Cornwall*, Alex Shankland

Institute of Development Studies, University of Sussex, Brighton, United Kingdom

Available online 11 March 2008

Abstract

Brazil’s Sistema Unico de Saude (SUS), a universal, publicly-funded, rights-based health system, designed and put in place in anera where neo-liberal reforms elsewhere in the world have driven the marketization of health services, offers important lessons forfuture health systems. In this article, we focus on the innovative institutional mechanisms for popular involvement and accountabil-ity that are part of the architecture for governance of the SUS. We argue that these mechanisms of public involvement hold thepotential to sustain a compact between state and citizens and ensure the political momentum required to broaden access to basichealth services, while at the same time providing a framework for the emergence of ‘‘regulatory partnerships’’ capable of managingthe complex reality of pluralistic provision and multiplying sources of health expertise in a way which ensures that the needs andrights of poor and marginalised citizens are not relegated to the periphery of a segmented health system.� 2008 Elsevier Ltd. All rights reserved.

Keywords: Participation; Brazil; Health systems; Accountability; Rights; Public sector

Introduction

Brazil’s Sistema Unico de Saude (SUS) is a univer-sal, publicly-funded, rights-based health system.Designed and put into place during an era in whichneo-liberal health reforms elsewhere in the world eand especially in Latin America e have driven themarketization of health, Brazil’s SUS holds a numberof important lessons for the development of futurehealth systems. Health systems, Bloom and Standing(2008) argue to this Special Issue are based on twokinds of compact: between states and professions, to

* Corresponding author. Institute of Development Studies, Univer-

sity of Sussex, Falmer, Brighton BN1 9RE, United Kingdom.

E-mail addresses: [email protected] (A. Cornwall),

[email protected] (A. Shankland).

0277-9536/$ - see front matter � 2008 Elsevier Ltd. All rights reserved.

doi:10.1016/j.socscimed.2008.01.038

restrict access to expertise through professionalisationin return for the power to regulate access to goodsand services through bureaucratic means; and betweenstates and the market, through the use of market mech-anisms to manage risk by limiting access. They arguethat these means of ‘socialising’ health systems have,in recent decades, come to confront a number of chal-lenges. Health expertise is increasingly pluralised, rede-fining what it means to be an ‘expert’ and redrawing theboundaries of what counts as ‘knowledge’. Otherboundaries come to be reconfigured in the process: be-tween the public and the private, between the roles ofthe state and the market, and between systems ofmedicine.

This article addresses a further dimension of thesechanges: that of the involvement of citizens in deliber-ation over health policy, in mechanisms for ensuring

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1 Figures from Ministry of Health IDB-2006 database (http://tab-

net.datasus.gov.br/cgi/idb2006/matriz.htm, accessed 15 June, 2007).2 Cabo de Santo Agostinho Municipal Health Secretariat epidemi-

ological report, 2006.

2174 A. Cornwall, A. Shankland / Social Science & Medicine 66 (2008) 2173e2184

accountability and in decision-making over prioritiesfor health service delivery. Users of health serviceshave traditionally been viewed by the medical estab-lishment as passive recipients of health care and healthinformation. Recent years have seen shifts driven bycultural and political changes. Those who were onceviewed simply as patients have come to be seen as‘users and choosers’ (Cornwall & Gaventa, 2001),with the capacity to exercise preferences and seek bet-ter quality services, whether through exit or voice(Hirschmann, 1970). The ‘users as choosers’ logic hasgained a quasi-hegemonic hold on health systems inthe north as well as the south, integral to reforms drivenby a logic of marketization and the rhetoric of choice.

Where the Brazilian SUS departs significantly fromthis logic is in treating those who seek access to healthservices as rights-holding citizens rather than ‘empow-ered clients’. The Brazilian ‘‘Citizens’ Constitution’’of 1988 established health as the right of all, definedits provision as the duty of the state and guaranteedthe right to participate in the governance of health, set-ting the ground for the establishment of institutional-ised mechanisms for citizen engagement atmunicipal, state and national level. The impetus thatled to the creation of the Brazilian SUS grew out ofa conjunction of elements: the democratisation of po-litical and societal institutions in the post-dictatorshipperiod; successful mobilisation by the Movimentopela Reforma Sanitaria (movement for health reform)that gathered momentum and influence over the courseof the 1980s; innovative institutional experiments thatprovided the inspiration for mechanisms for popularinvolvement and accountability within the SUS archi-tecture; and a political commitment to the provisionof publicly-funded services to all Brazilians.

In this article, we argue that it is the latter two fac-tors which provide particularly strong pointers to theways in which future health systems can learn fromthe Brazilian experience as they face the challenge of‘reconstituting institutional arrangements to takeaccount of social change’ (Bloom & Standing, 2008).In particular, we highlight their potential to sustain acompact between state and citizens which can ensurethe political momentum required to broaden access tobasic health services, while at the same time providinga framework for the emergence of ‘‘regulatory partner-ships’’ (Bloom & Standing, 2008) capable of managingthe complex reality of pluralistic provision and multi-plying sources of health expertise in a way whichensures that the needs and rights of poor and marginal-ised citizens are not relegated to the periphery of asegmented health system.

Amongst the challenges faced by current and futurehealth systems, two are key to the analysis pursued inthis article. The first is that of democratizing prioritysetting, which in the context of scarce resources andgrowing contestation over the values and knowledgesthat should inform their allocation is a matter of polit-ical expediency as well as of pragmatic efficiencygains. The second is that of creating new compacts be-tween citizens and the state that reconfigure relation-ships at the multiple interfaces between those whouse health services and those who provide them. Theanalysis that follows picks up on these two challengesand explores the dynamics of engaging citizens in theconstruction of the Brazilian health service. We beginby tracing the origins and development of the SistemaUnico de Saude (SUS) and its framework for citizenparticipation. We then go on to examine citizen partic-ipation through snapshots from three moments ofinstitutionalised engagement: the National Health Con-ference, which took place in Brasılia in December2003, the National Conference on Indigenous Healthheld in Caldas Novas in central Brazil in March 2006and the Municipal Health Conference held in Cabode Santo Agostinho in North-eastern Brazil, in April2006. Our analysis seeks to draw lessons from the Bra-zilian experience to address a broader set of questionsabout the possibilities e and limits e of citizen en-gagement in the shaping and management of healthservices, and the prospects these lessons offer for fu-ture health systems.

The Brazilian Sistema Unico de Saude

That the Brazilian SUS is making substantial in-roads in improving Brazil’s health indicators is beyondquestion. Between 1992 and 2004, national under-fivemortality figures fell from 65 to 27 per thousand,1 andthe proportion of poor households accessing health ser-vices rose by almost half, with the PNAD householdsurvey recording an increase in the number declaringthat they had used these services in the preceding 2weeks from 9.73% in 1986 to 14.18% in 2003(IBGE, 2005; Silva, 2003). In some places, improve-ments have been dramatic. In Cabo de Santo Agos-tinho, the site of one of our case studies, the infantmortality rate fell from 49/1000 in 1994 to 10.5/1000in 2006,2 due in no small part to the reorganization

http://www.tabnet.datasus.gov.br/cgi/idb2006/matriz.htm

http://www.tabnet.datasus.gov.br/cgi/idb2006/matriz.htm

3 As Melo (1993) has shown, the lobbying efforts of bodies repre-

senting health professionals were relatively ineffective during the pe-

riod between the 8th National Conference and the establishment of

the SUS, precluding any possibility that the new system would be

based on a ‘‘compact’’ between state and professionals of the type

which gave rise to Britain’s National Health Service.4 By 2002, 99.6% of municipalities had taken on decentralised re-

sponsibility for primary care, following a steep rise from 23.4% to

88.7% in the period 1994e1998 (Arretche, 2003; Costa, 2002).

2175A. Cornwall, A. Shankland / Social Science & Medicine 66 (2008) 2173e2184

of the delivery of primary care services and the intro-duction of a hugely successful national primary careprogramme, the Programa Saude da Famılia (PSF).

There is still much to be done to improve health eq-uity. Significant inequalities have persisted despite im-proved access, with marked differentials in healthindicators becoming evident when the data are disag-gregated by gender, race, income and region (Oliveira,2002). Middle-class consumption of private health in-surance has grown hugely since the introduction ofthe SUS, with private spending rising faster than publicspending. The expansion of the SUS has been punctu-ated by funding and management crises, reflected infrequent media stories of service collapse and abuse.Yet, the SUS has remained hegemonic, combining re-distributive action through the rollout of primary careprogrammes such as the PSF with increasingly asser-tive attempts to impose regulatory control over the bur-geoning private sector. Successive resource squeezeshave been overcome by political mobilisation to enactnew hypothecated taxes and protect the health sector’sshare of public spending from austerity-minded Trea-sury teams, culminating in 2000 with the passing ofa Constitutional Amendment guaranteeing the alloca-tion of a rising share of government revenues to theSUS. As we argue elsewhere (Shankland & Cornwall,2007), the SUS derives much of its legitimacy froma powerful ‘‘epistemic community’’ (Haas, 1992) com-mitted to its rights-based principles, which emergedfrom the struggle to create it. This has since beenable to reproduce itself through the Brazilian healthsystem’s unique array of participatory institutions.

The principles of the SUS e universality, compre-hensive care, equity, decentralisation and controlesocial (social oversight) e are the outcome of an in-tense process of renegotiating the nation’s health ser-vice design in the post-dictatorship period. Until themid-1980s, state-provided curative services were con-centrated in the cities and their hospitals, open onlyto the minority of workers who were employed in theformal sector (Costa, 2007). Systematic exclusion gen-erated popular discontent which was mobilised by‘‘people’s health movements’’ in several locationsacross Brazil (notably in the East Zone of Brazil’s larg-est city, S~ao Paulo). Catalysed by progressive publichealth practitioners who had been developing alterna-tive ‘community health’ approaches with the supportof universities and the Catholic Church, these localmobilisations coalesced into a national Movimentopela Reforma Sanitaria (movement for health reform).In the transition from dictatorship after 1985, leadingreformers (known as sanitaristas) took up key

positions in the federal and state-level health bureau-cracy (Costa, 2007; Melo, 1993; Weyland, 1995).

It was the group of sanitaristas led by CommunistParty activist Sergio Arouca (a researcher from theRio-based National School of Public Health who hadbecome an advisor to the Ministry of Health duringthe transition) that convened the historic 8th NationalHealth Conference of 1986. Previous Health Confer-ences had been closed gatherings of technocrats andpower-brokers, but for the 1986 Conferencia Nacionalthe Ministry of Health brought together thousands ofcommunity health activists from all corners of the na-tion, in a convincing demonstration of the mobilisationpower of what had now become known as the movi-mento sanitarista. The Conference declared health tobe ‘the duty of the state and the right of the citizen’,affirmed the principles of universality, equity, decen-tralisation and participation and generated sufficientpolitical momentum to ensure that these principleswere written into the new Constitution in 1988, andsubsequently into the legal framework for makingthem operational, the Lei Organica da Saude or BasicHealth Law of 1990 (Carvalho & Santos, 1995).

Establishing the SUS required bargains to be struckwith two key sets of players: municipal governmentsand the private sector.3 Winning over the former wasessential to achieve the SUS vision of decentralisationto the municipal level, and took a combination of polit-ical pressure, fiscal incentives and the creation of trans-parent criteria and mechanisms for resource allocation(Arretche, 2003).4 Accommodation with the privatesector, by contrast, was not the result of deliberatestrategising e the movimento sanitarista was viscerallyopposed to marketisation e but emerged out of politi-cal defeat for the movement: in the teeth of sanitaristaopposition, conservative political parties succeeded ininserting provisions into the Constitution that affirmedthe legitimacy of private-sector involvement in healthcare provision. This, in turn, underpinned the institu-tionalisation of substantial purchasing of services fromprivate hospitals and clinics by the SUS, giving privateproviders a stake in the system (Melo, 1993). Italso gave Constitutional legitimacy to the then-nascent

5 By 1999, 98.5% of Brazil’s 5560 municipalities had established

a health council (Melo & Rezende, 2004).


private insurance sector, enabling it to expand signifi-cantly over the 1990s before coming under SUS regula-tion by the end of the decade.

Writing in 2003, Marta Arretche described the es-tablishment and consolidation of the SUS as a ‘‘para-digm shift’’ through which the country ‘‘replaceda centralised health care model based on contributoryprinciples with one in which the legal right of free ac-cess to health actions and services at every level ofcomplexity is universal and in which service provisionis organised through a decentralised hierarchy’’ (2003:332 e our translation, emphasis in the original).Arretche’s (2003) conclusion was that while therewould be an ongoing process of adjustments to the sys-tem’s management arrangements, the rights-based SUSparadigm itself had become institutionalised to thepoint where it was unlikely to undergo any significantchanges. In the terms used by activists interviewed dur-ing our research, the SUS has ceased to be a polıtica degoverno (a policy associated with a particular party orregime) to become a polıtica de estado (state policy):a distinction that contrasts policies that particular gov-ernments bring in, that can be overturned by the nextincoming administration, with those that become em-bedded in the very fabric of the state, and becomevery difficult to supplant.

Institutionalised participation in the SUS

The field where the movimento sanitarista had un-qualified success was in shaping the provisions for cit-izen participation in the health system. The struggle fordemocratisation in Brazil was marked both by socialmovements’ deep distrust of the authoritarian and bu-reaucratic tendencies of the state and by the desire ofhealth reformers aligned with these movements to re-tain the state as the driving force and locus of policiesaimed at addressing Brazil’s profound inequalities. Outof this productive tension emerged the principle of con-trole social or ‘‘social oversight’’ of state-implementedsocial policies, and the framing of participation asa right.

The arrangements for institutionalising controle so-cial were based on the movement’s formative experi-ences. The ‘‘popular health councils’’ which had beenestablished by community activists struggling forhealth service accountability in the East Zone ofS~ao Paulo influenced the introduction of a legalframework which made it mandatory for each munic-ipality and state in the country to establish healthcouncils (Conselhos de Saude) in which there was par-ity of representation between representatives of users

and service providers, with the former occupying50% of the seats while 25% were reserved for healthworkers and the remaining 25% assigned to represen-tatives of municipal and state secretariats of healthand private sector providers contracted to deliver ser-vices by the state (Costa, 2007). Conselhos were givenextensive powers of spending oversight, and federaltransfers of funding made conditional on their ap-proval of budgets and health plans.5 Similarly, the ex-perience of the 8th National Health Conferenceinfluenced the design of a system of periodic Confer-encias at local, municipal, state and national levels,which complements the regularised participation inthe conselhos. The extraordinary capillary reach ofthese institutions engages literally hundreds of thou-sands of citizens in deliberation over health policy.Proposals are carried up from the municipal to the na-tional level through a sophisticated system of deliber-ation and voting in conferences at each tier ofgovernance. As we go on to describe, the technologyof participation used by the Brazilian health system isin itself an innovation worthy of attention by othercountries.

The growing literature on Brazil’s health councilspaints a mixed picture of the success of these institu-tions in democratizing the governance of health ser-vices (Coelho, 2004, 2006). Set in a context wheretraces of authoritarian and clientelistic political culture,high levels of bureaucratization, and variable degreesof civic organisation complicate the democratizing as-piration of controle social, few participatory councilsappear to have achieved sufficient independence fromestablished political interests and sufficient citizencompetence in relation to the technical, managerialand financial aspects of the health system to serve asgenuinely deliberative spaces. Three principal di-lemmas surface from these analyses. The first is thatof autonomy, and the extent to which the councilsare able to effectively hold to account a state withwhich its members have multiple and complex link-ages (Cornwall, 2006). The second is that of represen-tation, and the extent to which the councils genuinelyreflect the diversity of social actors and interests(Coelho, 2004; Tatagiba, 2002). And the third is thatof embedded inequalities of knowledge and power be-tween citizen representatives and health workers andmanagers (Avila Viana, 1998; Dal Poz & Pinheiro,1998; Rodrigues dos Santos, 2000). The democratic


legitimacy as well as the democratizing potential of thecouncils depends on addressing these issues.

For all the unevenness of their contributions tochanging the practices of health system management,the SUS’ participation mechanisms open up opportuni-ties for engagement to a huge diversity of social andpolitical actors, from national movements and unionsto grassroots NGOs and small community associations.Vast and ambitious training programmes seek to equiphealth counselors with basic information about thehealth system, health budgeting and their rights as cit-izens. The cumulative effect of bringing ‘new faces’, asone health manager put it (Cornwall, 2006), into local-level spaces and higher-level engagement at the stateand national level has been to continually amplify cit-izen engagement with, and commitment to, the SUSproject. This has lent it the political viability and resil-ience that has ensured its survival. In the following sec-tions, we examine how the dynamics of this processhave played out in three recent Conferencias.

The 12th National Health Conference of 2003

The 12th National Health Conference took place inBrasilia a year after the presidential election thatbrought Workers’ Party (PT) President Luis InacioLula da Silva into office. The conference’s theme‘‘The health we have, the SUS we want’’ capturedthe expectations that the arrival of a left-wing govern-ment might herald a new era for the improvement ofpublic health service provision. Named the Conferen-cia Sergio Arouca after the late Communist politicianwho played such a vital role in the 8th Conferenceand the Constitutional provisions for the SUS, the con-ference was lent further expectation by the promise ofthe new Minister of Health that, for the first time inBrazil’s history, the forthcoming National HealthPlan would be directly based on the Conference’s con-clusions. Elected through a series of stages, from sub-municipal pre-conferences to state-level conferences,the more than 3000 delegates who came to Brasiliarepresented a staggering diversity of interests. Manywere ordinary working class people travelling for hoursor even days by bus to reach Brasılia from Brazil’s ur-ban slums, far-flung rural areas and the vast terrain ofthe Amazon.

A preparatory process, spanning Brazil’s states andmunicipalities, had engaged over 300,000 people andgenerated long lists of proposals and demands. Overa period of 4 days, the Conference was to discuss theseproposals and to vote on recommendations for policy.Managing a deliberative process involving more than

3000 participants is as technically complicated as itis politically complex and it is worth giving an accountof how this was achieved. The Conference structurewas one that has been adopted throughout Brazil aspart of its distinctive technology of participation, givenan edge by the use of sophisticated real-time onlineregistration and collation of amendments using spe-cially developed software. A series of keynote presen-tations held in a massive central hall treated in turn thethemes for the conference, which ranged from healthservice financing and citizen oversight to science andtechnology. All delegates were issued at the outsetwith the list of proposals relating to each of the themes.Huge video screens in the main hall and in neighbour-ing rooms showed proceedings on the main stage; del-egates sat in silence combing the document line by lineas the readers went through each word of the proposedpolicies.

Data gathered by the Ministry of Health on partici-pants reveal that close to 50% were women, and over40% self-identified as black. Less than 30% of the healthservice user representatives had university education,and some 71% of all delegates had never attended a na-tional health conference before. Using criteria designedto ensure that each group’s composition would mirrorthe regional origins and institutional affiliations of Con-ference delegates, participants were divided into almost100 working groups, with multiple groups assigned todeliberating proposals falling under each of the confer-ence’s 10 themes. Over the course of a day, the groupscame to consensus on accepting, amending or rejectingproposals; their suggestions were entered directly intocomputer terminals and projected onto screens in thesmall group meeting spaces then collated centrally forthe next day’s plenary. Only those designated officialdelegates were allowed to vote, but ‘guests’ e such asourselves e were allowed to contribute to the discus-sions. Discussions in both of our small groups raged,with surprisingly high levels of participation given thediversity of the groups in terms of medical knowledge,status, education, race, gender and class.

Participant observation in one of these groups re-vealed that almost all of the participants spoke at leastonce, and that those who spoke the most were as likelyto be local-level community activists as health profes-sionals. The quality of these debates, and their attentionto issues of inclusion, was striking given the pressure onthe process to work through long lists of proposals andreach consensus. This was managed by reading throughthe list and people raising their hands to mark disagree-ment with an individual proposal, which was then reg-istered for later. Once the first round of approvals had


been completed, the group then took each objection oneby one, with the person registering the objection speak-ing first to suggest an amendment or to suppress theproposal. Debate ensued, either to reformulate theamendment or justify the inclusion of the proposal.To give an example, heated debate arose in one of thegroups over the mention of particular interest groupsas the focus for one particular policy: divided betweenthose who argued that since the SUS promised the prin-ciple of universality, there should be no special treat-ment for any group, and those who wished to extendthe list of those who were to be given special treatment.In the queue for lunch, and in meetings around thescheduled sessions, interest groups caucused and de-bated strategies for securing their proposals; in a coun-try so vast, the conference provided opportunities fornetworking and consolidating positions that would beotherwise more difficult to achieve.

The plenary debate saw calm deliberation give wayto animated argumentation as controversy eruptedaround one of the most contested areas of health pol-icy: reproductive rights. Debates raged deep into thenight. At one point, a plea came from the facilitatorfor the Catholic church activists jumping up anddown in agitation at the front of the hall to ‘desist inyour anti-democratic gesture’ and sit down: theywere blocking the view of the people in wheelchairsbehind them. The appearance of President Lula atone point in the proceedings brought rapturous ap-plause, which melted into demands for a return to thedebate as propagandising in favour of the PT govern-ment dragged on. The final plenary session continuedinto the small hours, but ultimately the list of conten-tious issues proved too long for the painstakingly dem-ocratic system of debates and voting to handle withinthe time available. As a result, the 12th National HealthConference arrived at an incomplete set of recommen-dations that took a further year to negotiate their waythrough regional ratification meetings e making theirfull inclusion into the National Health Plan impossible.Yet, if the impact of the Conference on policy wasquestionable, its broader impacts on the movementswho mobilised, caucused, enlisted and refined theirproposals in the spaces around the official programmewere not insignificant, galvanising and reinvigoratingtheir energies and struggles for rights.

The 4th National Conference on IndigenousHealth, Caldas Novas, 2006

One of the movements whose representatives andallies were active in using the 12th National Health

Conference as a space in which to press for recognitionof their rights claims was that of Brazil’s indigenouspeoples. Aside from securing the insertion of specificreferences to indigenous Brazilians as a priority groupin several Conference resolutions, the movement alsopushed through a motion requiring that a specificNational Conference on indigenous peoples’ healthbe convened within 2 years (Conselho Nacional deSaude, 2004).

When the 4th National Conference on IndigenousHealth was convened in March 2006, the institutionalframework of the ‘‘Indigenous Health Care Subsys-tem’’ of the SUS had formally been in place for 6years. Created in 1999 through a law sponsored bySUS founding father Sergio Arouca and formalisedin the National Policy of 2000, which emphasisedboth indigenous participation and the importance oftraditional medicine, and established the principle ofinterculturalidade e working respectfully across cul-tural boundaries e the Subsystem represented the firstserious attempt to address the specific health rights andneeds of indigenous Brazilians after five centuries ofdecimation by epidemics, displacement and genocidalviolence. The Subsystem was based on ‘‘Special Indig-enous Health Districts’’ (Distritos Sanitarios EspeciaisIndıgenas, or DSEIs), managed by the Ministry ofHealth’s executive arm, FUNASA (the Fundac~ao Na-cional de Saude, or National Health Foundation), andexempt from the requirement to devolve control to mu-nicipalities (Athias & Machado, 2001). By 2006, 34DSEIs covering Brazil’s more than 500 recognised in-digenous territories had been established, and annualfederal spending on health care for indigenous peopleshad risen by 260% since the start of the decade, to overUS$100 million (Dias, 2006). In defining the indige-nous health service as a specific branch of the SUS,the legislation also sought to address the tensions be-tween a one-size-fits-all model of service universaliza-tion and the indigenous peoples’ movement’s insistentdemands for recognition of difference e both culturaland epidemiological.

Despite this unprecedented level of political andfinancial commitment, the months preceding the Con-ference were dominated by expressions of indigenousdiscontent, including widely publicised occupationsof regional FUNASA offices by bow-and-arrow-wield-ing warriors protesting at the continued prevalence ofavoidable deaths among their relatives in the villages.The indigenous movement and its NGO allies blamedFUNASA for the failure of the subsystem to deliveron its promises, citing repeated delays in funding trans-fers to the DSEIs which had left medicines

6 Sources: Dias, 2006 and author interviews with Conference dele-

gates and the former indigenous advisor to a DSEI in the Amazon.


unpurchased and medical teams unpaid (ISA, 2006). Inaddition to the deep-rooted management problems as-sociated with FUNASA’s reliance on outsourcing toensure service delivery, accusations of outright corrup-tion had proliferated with the growing penetration ofFUNASA’s senior echelons by appointees of the clien-telistic political parties which had joined the Lula gov-ernment’s parliamentary coalition (ISA, 2006). Asa result, FUNASA found itself organising a Conferen-cia which looked set to be dominated by challenges tothe legitimacy of its mandate to manage the IndigenousHealth Care Subsystem.

The choice of venue for the Conference e a spa re-sort several hours’ drive from Brasılia e triggered ac-cusations that FUNASA was trying to keep dissentingindigenous voices away from the journalists and deci-sion-makers of the capital. The Conference organisersresponded by emphasising the appropriateness of sucha sylvan setting for a gathering of indigenous people ereinforcing a stereotype of ‘‘children of Nature’’ atodds with the diverse reality of Brazil’s indigenousgroups, many of which are increasingly urbanised. Atthe opening ceremony, hand-picked delegates paradedin full tribal finery. A panel of dignitaries lauded the‘‘unprecedented level of indigenous participation’’ inthe Conference. The sole indigenous member of thispanel, the Chairwoman of the National Forum of Indig-enous Health District Council Presidents, was notasked to speak.

As the Conference progressed, tensions emerged be-tween the rhetoric of interculturalidade and the realityof rigid application of standardised SUS practices forpolicy deliberation. In a long and tedious plenary ses-sion, a representative of the National Health Councilread out a document stating the rules for the conductof the Conferencia larded with abstruse Latinate legalterminology. In the thematic groups in which delegatesconsidered hundreds of specific proposals collatedfrom local and DSEI preparatory Conferences, indige-nous delegates using traditional deliberative styleswere chided for straying from the topic and delayingproceedings, and reminded that only appropriatelyworded written motions could be accepted for submis-sion to plenary vote.

While there was little disagreement over the contentof the Conference’s policy recommendations e notleast because the existing National Policy already pro-vided for many of the improvements sought by userrepresentatives e confrontation flared in the finalplenary over a proposal to end FUNASA’s leadingrole in the Indigenous Health Care Subsystem. A splitemerged between delegates from the Northeast, where

indigenous representatives felt they got more supportfrom FUNASA than from the indifferent or even hos-tile municipal SUS managers, and the Amazon, wheremovement organisations had become directly involvedin service delivery and complained bitterly that theirwork had been hamstrung by bureaucratic and politicalinterference from FUNASA (Shankland & Athias,2007). Capitalising on this split and mobilising thefull machinery of clientelistic politics e including sys-tematic packing of delegations and exclusion of poten-tial dissenters, even where they had been mandated asdelegates by their District conferences6 e the FU-NASA managers succeeded in defeating a motion call-ing for responsibility for the subsystem to be removedfrom the agency and transferred to a new Secretariatfor Indigenous Health within the Ministry.

Despite the alienating effect of imposed delibera-tive practices that owed nothing to interculturalidade,the patronising tone of the conference organisers andthe bitter polarisation promoted by FUNASA’s manip-ulative behaviour, the majority of rank-and-file indig-enous delegates interviewed were broadly positiveabout their experience of participation in the Confer-ence. Most had never participated in a large-scale pol-icy forum of this type. Despite the colourful trappingsof the Conference’s lip service to indigenous culturethey had no expectation that it would prove to bea space they could claim as their own. Instead, theyaccurately identified it as a site provided by the ‘‘whitestate’’ and run according to its rules. In the absence ofa clearly defined alternative policy platform aroundwhich to mobilise, their efforts went into learning asmuch and as fast as they could about those rules. In-terviewee after interviewee referred to the copiousnotes they had taken, the insights they had gainedfrom talking to indigenous representatives from otherregions and the wealth of information they would beable to relay back to their communities e informationwhich they felt would be invaluable in the everydaystruggles for accountability in the health posts andDSEIs.

These struggles have not been domesticated by theprovision of a formal participation space e grassrootsmobilisations and direct action to protest at FUNASA’sfailings continued after the Conference (ISA, 2006).Instead, the Conferencia provided the opportunity toacquire knowledge and develop skills for future useas the SUS-based architecture of institutionalised par-ticipation becomes embedded in the Indigenous Health


Care Subsystem. Deeply unsatisfactory as the Confer-ence was judged to be by NGO activists and indige-nous movement leaders (Dias, 2006), it neverthelessprovided a significant step on the road to a ‘‘compact’’between the SUS and one of the most vulnerable andunruly groups of Brazilian citizens. The final termsof that compact have yet to be defined, but the processof engagement has enabled hundreds of indigenousrepresentatives across Brazil to learn how the systemfunctions and begin to develop the strategies whichmay one day give them a more effective voice in ensur-ing that it respects their specific needs, rights andknowledges.

Cabo’s Municipal Health Conference, 2006

Just over 2 years after the 12th National HealthConference, in April 2006, the Municipality of Cabode Santo Agostinho, in the north-eastern state of Per-nambuco, held its 6th Municipal Health Conference.Delayed by the elections of October 2005, which hadseen the populist Partido Trabalhista Brasileiro(PTB) party take the municipal administration fromthe leftist Partido Popular Socialista (PPS), the statedaims of the conference were to discuss the MunicipalHealth Plan rather than to generate proposals to betaken through the sequence of conferences to the na-tional level. A series of pre-conferences had engagedsome 700 people from across the municipality. Theconference, which brought together 200 delegatesand a further 50 guests and observers, took place ina leaking sports facility in one of Cabo’s poorer areas,with no fancy electronic technology beyond power-point projection onto a large screen and microphoneamplification in the main hall. Clustered at the frontof the horseshoe layout of the hall, health managerssat en bloc; the remainder of the hall was filled with‘ordinary people’ of all races, most of whom wereworking class.

The conference began with two performances. Onewas a video showing clips from the pre-conferences,whose use of piped Brazilian music and subtitleswith slogans about Cabo was reminiscent of party po-litical campaign propaganda. The other was of a differ-ent order altogether. A feminist theatre group gavea memorable rendition of some of the acute problemsof access faced by women, at turns poignant and hilar-ious. The video carried the paternalistic populism ofthe administration and framed health as an issue of pol-itics rather than professionalism, one that the electorateought to look to those who have their best interests atheart to take care of on their behalf. The theatre

performance subverted this by placing women’s ownhealth knowledge e of failing to receive test resultsfrom cervical smears, of enduring unattended labour,of being spoken down to by medical professionals eat the heart of the matter.

The next day saw a series of formal panel sessions,at which recognised experts e including some broughtin from elsewhere in Brazil e addressed the assembledmasses on the key themes of the conference. Thesethemes, which had been chosen through an intense se-ries of debates in the municipal health council, werethe consolidation of the SUS in Cabo, challenges formanagement and citizen oversight, biotechnology andcross-sectoral coordination. The experts spoke withpassion and eloquence; they sought to convey complextechnical information in terms that their audiencemight grasp. The intense look of concentration on thefaces of those who sat in their conference T-shirts inrows facing the dais evidenced their efforts to take inthe wealth of information they were being given. Aftera long, hot day sitting silently being addressed by ex-perts and senior government officials, participantsshowed little sign of flagging: a count at the start andend of the day revealed some shifting patterns of par-ticipation, as some of the women left to take care ofchildren and more men arrived to take part after finish-ing work. The conference hall remained packed rightuntil the end of the day.

The next morning, the delegates reconvened for an-other half-morning’s panel. Then, from mid-morninguntil closure at five, the participants were assignedthe task of working in small groups to go through theaccumulated proposals that had come from the pre-conferences at which delegates had been elected. Ineach group, the proposals were read out, objectionswere registered, and then each in turn was eitherrejected or amended. Styles of deliberation varied, de-pending on whether those in the group had previousexperience of conferences. Intensive participant obser-vation in one small group revealed impressive effi-ciency. No more than 10 min was spent on anyproposal, and conclusions were often reached muchmore quickly; by the end of the day, groups hadapproved, amended or rejected 176 policy proposals eand generated a number more. Ordinary people, someof whom had never participated in this kind of eventbefore, saw their proposals or amendments appearingon the projector screen. One woman in the lunchqueue exclaimed to her friend, ‘my proposal gotthrough, can you believe it?’. The exhilaration offeeling that there really was a chance of influencingpolicy was palpable.


The knowledges negotiated in debates over particu-lar policy items reveal the extent to which the partici-pation institutions of the SUS have succeeded inequipping citizen representatives with sufficient techni-cal knowledge to reach judgements on areas of policythat might otherwise be considered ‘too technical’ forlay consideration. A case in point was debates on col-coscopy and cervical cytology services, which raged inthe small groups and made their way into further ple-nary debate. In one of the groups, two male membersof the municipal health council e both working class,with low levels of education e debated the pros andcons of different delivery options with a senior psy-chologist and a women’s movement activist. One wasto stand up in plenary the following day to articulatehis position, in favour of the solution proposed bythe women’s movement. What became evident in thesediscussions is that where citizen competence reachedits limits, health professionals stepped in: but theydid to so explain, in lay terms, what was at stake.Much of the participation literature is concerned withwhat citizens can contribute; it neglects, at times,what they can learn from professionals and ‘experts’,and from these processes of deliberation with othercitizens.

Another instance of the negotiation of knowledgeswas in relation to the economics of priority setting.Calls for the construction of a hospital elicited the in-tervention of the Municipal Secretary of Health.Rather than dismissing user demands as irrational, heproceeded to give an account of the relative returnsto different kinds of services and the trade-offs thatwould need to be made were resources to be chan-nelled into building, staffing and equipping a hospital.His arguments were accepted: that he needed to pro-vide such a detailed justification, and did so in termsthat enabled people without budgetary knowledge tofollow his reasoning, is testament to the nature of thedeliberative process. It would have been easy enough,after all, simply to say that there is no money for suchthings.

Where citizens did bring their knowledge to bear itwas generally in cases where their awareness of localconditions exceeded that of the professionals; pre-cisely the kind of knowledge to which advocates of de-liberative democracy such as Cohen and Sabel (1997)and Fung and Wright (2003) draw attention. Disrupt-ing the smooth talk of the senior health managerswere the voices of citizens from around the municipal-ity, talking of what had been promised and not deliv-ered, and of experiences in clinics, in queues, inneighbourhoods where absent doctors left would-be

patients stranded. There was in this talk less an atmo-sphere of confrontation than one of indignation: howwere the government going to make good theirpromises?

By the end of three intense, long, hot days of delib-eration, the conference hall was still full of people; onthe day of the plenaries, delegates worked well into theafternoon without breaking for lunch to secure consen-sus on the morning’s proposals. The commitment ofthose who were part of the process was palpable.One of the most rousing parts of the Conferencecame at the very end. After all the recommendationshad been approved, a motion was put to the assemblythat the practice of having a separate lunch table for theSecretary of Health and his team should not be re-peated at subsequent events. For the first time in 3days of orderly discussion, there was uproar as peoplethroughout the hall cheered, clapped and protested.The motion was carried, to the stony disapproval ofthe secretariat. As people spilled out of the conferencehall, a health user delegate grinned with triumph: ‘thisis a democracy, we have the right to be treated asequals’.

Conclusions

While much of the focus in the literature on Brazil’sparticipatory institutions has been on the conselhos andon the now-famous institution of participatory budget-ing, our analysis suggests that the contributions that theConferencias make to sustaining the SUS model ofrights-based health reform are an important part ofthe story. Stimulating waves of engagement that ripplethroughout the country, drawing together hundreds ofthousands of people in deliberating health policies,and creating spaces for mobilisation as well as sitesfor social movements to press their claims on the state,the Conferencias are an instance in which some of thepromise of radical democracy comes to be lived out.

What makes the Conferencias especially interestingfrom a future health systems perspective is the placethey occupy within a more complex architectureof public engagement. This architecture couples open-ended deliberation across large numbers of people ethe estimated 300,000 people, for example, who partic-ipated in municipal and state-level conferences leadingup to the National Conferencia e with more than 5000regularised, smaller-scale conselhos that bring over100,000 citizens together with state officials everymonth to hold the state to account for their commit-ments and monitor health spending. It actively seeksto expand the democratizing effects of citizen

7 Indeed, this may already be happening; participants in a workshop

convened by the National Health Council to prepare the way for the

13th National Health Conference (held in 2007) reported falling

levels of Conferencia participation in several states (Conselho Nacio-

nal de Saude, 2006: 3), and in late 2007 the government failed to se-

cure Senate approval for the renewal of the CPMF financial

transactions tax, a major source of health system funding.


engagement to new social actors, through rotationof membership of the councils and the election ofdelegates to the Conferencias at every level. And byengaging representatives rather than individuals, itholds the potential of stimulating the creation of newcollective actors, mobilising those collective actors toseek the realisation of commitments and ensuring a de-gree of accountability to a constituency. The Brazilianparticipation architecture offers a very differentapproach to, for example, the UK’s approach to publicinvolvement e in which citizens are consulted as indi-vidual consumers of health services: Brazil’s rights-based approach to citizen participation engages citizensnot as ‘choosers’, but as those who should be activelyengaged in shaping policies and holding the state toaccount for delivering on them. It treats them not asatomised ‘active citizens’ or ‘expert patients’ who areencouraged to participate in the delivery of their ownservices, but as ‘makers and shapers’ (Cornwall &Gaventa, 2001), who have a vital role to play in thegovernance of health services. It is here, perhaps, thatthe most important lessons of all for the developmentof future health systems are to be found.

In a country marked by profound social and healthinequalities and a history of exclusionary service deliv-ery models, the rights-based reforms which created theSUS have enabled enormous strides towards makingfree universal primary care a reality. It is important,however, not to overstate success: there are, and re-main, significant difficulties in realising the sanitaris-tas’ vision for citizen engagement in the governanceof health care. The overt politicisation of spaces for de-liberation, the ‘incivility’ and lack of autonomy of‘‘civil society’’, residual bureaucratic arrogance andfears about ceding too much to citizen control e these,and other problems continue to beset the process ofrealising this ambitious experiment in democratic gov-ernance. And yet, there have been significant gains, notleast to health outcomes. Given the scale of thechanges in political and professional culture that areneeded to truly democratise the governance of healthin this setting, these gains are significant. Ultimately,it is the political legitimacy secured in institutionalis-ing citizen oversight of financial management that rep-resents the most important resource on which thesystem can draw as it matures and broadens its regula-tory reach.

Inevitably, however, as the SUS matures and comescloser to fulfilling its mandate of health rights for all,the political momentum that has enabled it to weatherthe adverse wave of neo-liberal reforms e and aboveall to ensure that public health spending receives an

ever-rising share of GDP e will begin to ebb.7 Asthe need for mobilisation to sustain the rollout of basicservices recedes and the task of prioritising amongmultiple demands on scarce resources grows morepressing, the participation architecture of the SUSwill need to shift from sustaining the legitimacy ofa ‘‘regulatory partnership’’ between state and citizenryto actually delivering on its functions. This architecturehas demonstrated limitations, above all in includingand arbitrating between diverse sources of expertise,but its very existence provides a valuable startingpoint: the fact that it has emerged, evolved and becomeembedded in the institutional fabric of the SUS givesBrazil an enormous advantage as it faces the challengeof negotiating the social compacts that will define andsustain the future shape of its health system.

Bloom, Lloyd, and Standing argue in their overviewarticle for a ‘‘contextual approach’’ to health systems.The rise of Brazil’s SUS undoubtedly owed much tothe convergence of a number of contextually- and his-torically-specific factors. These included the remark-able upsurge in social movement rights-claimingwhich marked the 1980s, the post-Dictatorship politi-cal consensus on the need to address the inequalitiesin access to public services and the combination ofideology and pragmatism which identified controle so-cial as a mechanism to preserve the legitimacy of state-led social development by using citizen oversight tosteer its course and tame its excesses. While this con-junction of circumstances is unlikely to recur e in Bra-zil or anywhere else e there are many contexts wherea burst of ‘‘social energy’’ (Bebbington & McCourt,2007) around addressing health inequalities could bechannelled into the building of new compacts capableof sustaining more equitable future health systems.

The wider lesson from Brazil lies in the power ofrights-based health reform to mobilise citizen engage-ment. If successfully institutionalised, such reform cangenerate the political legitimacy necessary to sustainthe initial rollout of services, while at the same timeembedding practices that will enable future health sys-tems to adapt to meet the challenge of pursuing healthrights for all in a rapidly changing and increasingly un-equal world. Contextual considerations are clearly im-portant here. But there are ingredients of institutional


design used to shape Brazil’s participatory institutionsthat do have something more generic to offer the de-sign of future health systems. These include a legalframework that creates statutory obligations to engagecitizens in deliberation over health policy and in hold-ing the state to account; the creation of a network ofinstitutions from the very local to the national level,lent functionality through resources committed by thestate; the combination of deliberative Conferencias atwhich policy directions are determined and Conselhosto track their implementation; and in going beyond theatomised individual to engage representatives of socialmovements, associations and neighbourhoods, renew-ing membership regularly to extend the capillary reachof the democratizing effects of engagement.

Acknowledgments

We owe thanks to many Brazilian colleagues fortheir support for our work. Special thanks are due toSilvia Cordeiro and other colleagues at the Centrodas Mulheres do Cabo, members of Cabo de SantoAgostinho’s municipal health council and to MarinaMachado, Andrea Giberti and Nilda Rodrigues ofAssociac~ao Saude Sem Limites. We are extremelygrateful to the organisers of the 12th National HealthConference, the 6th Municipal Health Conference inCabo and the 4th National Conference on IndigenousHealth (in particular, Artur Custodio Moreira de Sousa,Luciana Benevides and Ademir Gudrin) for havingfacilitated access to the Conference processes. Theresearch on which this article is based was funded bythe Development Research Centre on Citizenship, Par-ticipation and Accountability (Cornwall) and the UKEconomic and Social Research Council (Shankland).

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