Document 6507142

Regiane Garcia
1 University of British Columbia, Faculty of Law
Ph.D. candidate
How to Evaluate Community Participation as a Social Determinant of Health?
Studies from Brazil
Introduction
Community participation as an action on the social determinants of health (SDH) for
improving health equity is at the core of virtually all international health and human
rights treaties, and some national constitutions around the world, including Brazil’s 1988
Federal Constitution. Interest in finding effective ways for community involvement in
health issues increases insofar as policy-makers consistently struggle with questions such
as when it is suitable to involve the public, what is the most effective means to do so, and
how to measure meaningful community involvement in the health arena.1 However, the
dearth of rigorous studies examining the meaning of effectiveness and drawing
generalizable lessons in the context of participation in health poses barriers for policy
makers interested in implementing effective and meaningful participatory processes.2
This paper highlights Brazil’s experience of community participation as a SDH action,
and reviews Brazilian studies attempting to evaluate Brazil’s experience of community
participation in the health arena. In light of renewed calls for evidence-based information
on how community participation works as a social determinants intervention,3 and the
unsettled understanding about criteria to assess community participation in the context of
health,4 the present discussion seems especially relevant. In addition, Brazil’s
participatory experience has been seen as one of the world’s most important experiments
of citizens’ involvement in public policy decision-making.5 For instance, leading scholars
1
J. Abelson et al., “Obtaining public input for health-systems decision-making: Past experiences and future
prospects” (2002) Canadian Public Administration 45(1)
2
J. Abelson et al. “Deliberations about deliberative methods: issues in the design and evaluation of public
participation processes” (2003) Social Science & Medicine 57 239–251
3
O. Solar and A. Irwin, “A conceptual framework for action on the social determinants of health” (2010)
World Health Organization, Social Determinants of Health Discussion Paper 2 (Policy and Practice)
4
S. F. Halabi, "Participation and the Right to Health: Lessons from Indonesia (2009) Health and Human.
Rights, Vol . 11, No. 1, pp. 49-59
5
J. Gaventa, Prefacio in V. Coelho and M. Nobre (eds.), Participação e Deliberação: teoria democrática e
experiências institucionais no Brasil contemporâneo (Sao Paulo: Letras, 2004)
Regiane Garcia
2 University of British Columbia, Faculty of Law
Ph.D. candidate
in the field of participatory design have suggested that Brazil’s model of participation
provides important lessons concerning inclusion and quality of deliberation (Fung and
Wright, 2001).6 Brazil’s experience might help other countries identify what was
successful, and what was not, in participation in the health context and SDH.
Drawing on the right to health literature, this paper argues that community participation
in the context of the right to health and SDH, as is the case of Brazil, should be measured
in terms of equity achieved within the process (for e.g., inclusion of marginalized groups,
influence over the process and access to the outcomes), and in terms of the nature and
quality of the outcomes associated with participation (for e.g., if policies promotes a redistribution of social determinants and addresses the underlying causes of an unfair
distribution). A growing body of Brazilian studies has been attempting to assess equal
participation within participatory processes and equal access to policy outcomes arising
out of those processes. In particular, Brazilian scholars have been looking at issues of
inclusion in the process of the most marginalized groups and the degree of their
influence;7 accessibility to participatory mechanisms;8 power dynamics within the
process;9 community representativeness within the participatory process and
accountability to the community they represent;10 and equity in distributive outcomes.11
Those empirical inquiries have played a key role in the understanding of ideal conditions
and structural designs for improved inclusiveness and participation of traditionally
marginalized groups in the political process in Brazil. However, those studies have been
less attentive to the nature of the policies arising out of those processes, in particular,
6
A. Fung and E. O. Wright, “Deepening Democracy: Innovations in Empowered Participatory Governance”
(2001) Politics and Society Vol 29 1
7
V. S. Coelho et al., “Mobilization and Participation: a Win-Win Game?” in V. S. Coelho an B. Von
Lieres (eds)., Mobilizing for Democracy – Citizen Action and the Politics of Public Participation (Zed
books: London, 2010)
8
L.H.H. Luchmann and J. Borba, “Participação, desigualdades e novas institucionalidades: uma análise a
partir de instituições participativas em Santa Catarina” (2007) Working paper presented at the 31st Encontro
Anual da Anpocs
9
A. Wendhausen and S. Caponi, “O dialogo e a participacao em um conselho de saude em Santa Catarina,
Brasil” (2002) Cad. Saude Publica, Rio de Janeiro, 18(6): 1621-1628
10
Lavalle, Avritzer,
11
For instance, Coelho supra note 7. See also A.C. Teixeira and L. Serafim, “O impacto da participação
nas políticas públicas: o caso da saúde em São Paulo” (2010) Working paper presented at the Anais do III
Seminário Nacional e I Seminário Internacional Movimentos Sociais Participação e Democracia, 11 a 13 de
agosto de 2010, UFSC, Florianópolis, Brasil
Regiane Garcia
3 University of British Columbia, Faculty of Law
Ph.D. candidate
whether the policy outcomes have been acting on the structural social determinants of
health that (re)produce inequities in health. While refining procedures to ensure
inclusiveness and diversity of participants and equal access to the outcomes are important
for advancing equity in health, equally important is ensuring that the outcomes of
participatory processes address the social processes underlying the unequal distribution of
social determinants among groups occupying unequal positions on the socio-economic
ladder.
To develop its argument, the paper proceeds in three sections. Section I overviews
Brazil’s legal structure of participation and underlines the interplay between the legal
structure and the notion of social determinants of health. Community participation is part
of the architecture of the right to health in Brazil, and for clarity, the section starts with a
review of the right to health followed by its relationship with social determinants, health
equity, and community participation. In addition, this section briefly presents some
background information about the historical roots of the legal framework, with the view
of providing some context for the discussion. Section II reviews the literature on health
and human rights concerning community participation as part of the right to health, and
an action on the social determinants of health. Section III reviews the literature evaluating
participation in the context of health in Brazil. This section argues that i) this body of
work has been successful in assessing the impact of participation in terms of inclusion,
quality of the process and distributive outcomes, and that ii) the literature on the right to
health would enrich Brazil’s empirical studies assessing participation in the context of
health. The paper concludes with a brief overview and suggestions for further inquiry. A
final caveat: this is a preliminary work attempting to uncover aspects on ways that
concepts of SDH can assist participatory evaluation studies. The goal of the paper is only
to incite discussion about appropriate frameworks to assess participation as a SDH
intervention. While the basis of the analysis will be drawn from Brazil, Brazil’s
experience has the potential to help any country searching for guidance on interventions
Regiane Garcia
4 University of British Columbia, Faculty of Law
12
Ph.D. candidate
to act on the SDH and health inequities. The hope is that Brazil’s experience might help
other countries identify what is successful and worth repeating, and what has not
succeeded as planned and might need to be revised to ensure that community
participation strategies act meaningfully on the SDH and health inequities.
Section I – Community Participation in Brazil – Law, Roots, and Practice
Before proceeding to the core tasks, some background information about Brazil’s legal
system is in order. Brazil’s 1988 Federal Constitution is the supreme law of the land and
the ultimate source of authority in Brazil; meaning that every legislative, executive,
and/or judicial decision must follow the constitutional order. The enactment of the
Constitution on October 5th of 1988 was greatly celebrated in the country as the official
landmark of the end of two decades of military dictatorship as well as the return to
democracy and the rule of law. The document, affectionately called Constituição Cidadã
(Citizen’s Constitution), represented the high hopes of its framers and all Brazilian
people, who avidly rallied around the country demanding democracy and constitutional
rights.13 The 1988 Constitution articulates a vision of a democratic Brazil with
progressive ideals of social justice. With the goal of promoting social inclusion, the
constitutional framers meticulously ensured constitutional guarantees for a vast array of
civil, political, economic, social and cultural rights; the right to health is an example of
the many rights guaranteed by the 1988 Constitution. In addition to securing fundamental
rights, the framers sought to cement the foundation for a democratic Brazil by
entrenching ways for direct popular participation beyond regular voting; community
participation in the health system is an example of the aspired direct participatory
mechanisms. The recognition of health as a social right (i.e. beyond healthcare services
only) and a citizenship right (i.e. an entitlement of all Brazilians and a corresponding duty
12
On May 9, 2011, the Lancet has published an issue entitled Series Brazil discussing Brazil’s experience
in public health. In the opening comments, Kleinert and Horton refers to Brazil’s experience as a source of
inspiration and evidence: “strong emphasis on health as a political right, together with a high level of
engagement by civil society in that quest, might also mean that other countries can look to Brazil for
inspiration (and evidence) to solve their own health predicaments” (2011) The Lancet, Vol. 377 No. 9779,
pp 1721-22
13
See for example, J. A. Moisés, “Dilemas da consolidação democrática no Brasil” (1989) Lua Nova:
Revista de Cultura e Política, (16), 47-86 [Portuguese]
Regiane Garcia
5 University of British Columbia, Faculty of Law
Ph.D. candidate
of the government) was a significant victory of the Movimento Sanitarista, a group of
social and health activists, including health professionals, academics, medical students,
and community members.14 According to Sonia Fleury, the movement and the proposed
health reform “is known as the project and the trajectory of constitution and
reformulation of a field of knowledge, a political strategy and a process of institutional
transformation.”15 The ideals for the health reform were based on the Latin American
Social Medicine thoughts and Liberation theology ideals.16 Talking about the Latin
American Social Medicine movement, Waitzkin and colleagues further elaborate:
(…) Latin American leaders have emphasized theory that both informs
and takes inspiration from efforts toward social change. Research and
teaching activities often take place in collaboration with labor unions,
women’s groups, Native American coalition and community
organizations.17
For Brazilian social medicine leaders, the ideal was to bring ‘the classroom to the
community’ so medical students in collaboration with community members could trace
the social and political roots of the community’s health problems, and together design
concrete solutions for their health-related needs.18 The aspiration was that cooperation
among stakeholders would allow communities to devise solutions to a given problem
based upon their own creativity and logic, the key to create sustainable social change.19
Brazil’s social medicine emphasized grassroots participation and community
empowerment in health-decision-making and downplayed the over reliance on curative
treatment.20 In fact, the movement was part of the resistance to the dictatorship and to
14
S. Escorel, Reviravolta na Saúde: origem e articulação do movimento sanitário (Fiocruz, 1999)
Sonia Fleury, “Brazilian sanitary reform: dilemmas between the instituting and the institutionalized”
(2009) Ciênc. saúde coletiva vol.14, n.3, pp. 746
16
For e.g., J. Pain and N. de Almeida Filho, “Saúde coletiva: uma “nova saúde pública” ou campo aberto a
novos paradigmas?” (1998) Rev. Saúde Pública, 32 (4): 299-316, 199
17
H. Waitzkin et al, “Social Medicine Then and Now: Lessons From Latin America” (2001) American
Journal of Public Health Vol 91, No. 10, pp 1598
18
A. S. S. Arouca, “O dilema preventivista: contribuição para a compreensão e crítica da medicina
preventiva” (Doctoral thesis, University of Campinas,1975)
19
ibid
20
Escorel supra note 14, pp 73
15
Regiane Garcia
6 University of British Columbia, Faculty of Law
21
Ph.D. candidate
the privatization of health services. A pivotal moment for the Movimento Sanitarista
was the VIII National Health Conference in 1986,22 where various segments of Brazil’s
civil society, including representatives of the most important healthcare institutions,
professional groups, academics, students, activists, lawyers and left wing political
parties, agreed upon the following directives for the health reform in Brazil:
•
Health is the outcome of social conditions such as food, housing, education,
income, work conditions, transport, access to services, including healthcare, etc.,
and unfair access to social conditions for health leads to inequalities
•
Health is an inalienable right of the human being (a citizenship right), and
corresponding duty of the government
•
In order to assure the right to health, the State must create a national health system
guided by the principles of universal access, comprehensiveness, decentralization
with a single authority in each federal jurisdiction, as well as popular participation
in the formulation, execution and control of health policy.23
In 1986, the federal government established the National Commission for Health Reform
to review the Brazil’s healthcare system and make recommendations for reforming the
system.24 Embracing the 1978 Alma-Ata principles and the recommendations of the VIII
Health Conference report, the Health Reform Commission’s report contended that the
realization of the right to health25 depended upon the existence of an effective health
21
Conselho Nacional de Secretários Municipais de Saúde (CONASEMS), Movimento sanitário brasileiro
na década de 70: a participação das universidades e dos municípios - memórias (Conselho Nacional de
Secretários Municipais de Saúde, 2007) [Portuguese]
22
The VIII Conference was the most important forum for debate about the right to health. “This
Conference [was] convoked by the President of the Republic in July 1985 and held in Brasilia in March
1986, was attended by the country's President, the Minister of Health and assembled almost five thousand
representatives from almost all the social forces interested in the health question”. Maciel paper Rev. bras.
sa de matern. infant., Recife, 2 (2): 91-103, maio - ago., 2002.
23
The ideology and main points discussed during the VIII Conference may be found in detail at the
Ministry of Health’s web page. Online:
http://portal.saude.gov.br/portal/saude/cidadao/area.cfm?id_area=1124 [last accessed on May 27, 2013]
[Portuguese]. Summary Rev. bras. sa de matern. infant., Recife, 2 (2): 91-103, maio - ago., 2002.
24
CNRS (Comissão Nacional da Reforma Sanitária). Documentos I. Rio de Janeiro: CNRS; 1987
25
Based on the Article 12 ICESCR "the right of everyone to the enjoyment of the highest attainable
standard of physical and mental health"
Regiane Garcia
7 University of British Columbia, Faculty of Law
Ph.D. candidate
system with equal access to and distribution of social conditions that affect health
outcomes, including quality healthcare as well as social determinants of health.26 In 1987,
the Commission released its final Report with reform proposals, including
recommendations for a new law for the national health system to include health as a
citizenship right and participation as part of the right to health.27 The Commission’s
Report formed the political and ideological directives during the drafting of the Health
Chapter in the Brazilian Constitution discussed below.28
Brazil’s Law: the Right to Health, Social Determinants and Health Equity
The social and transformative value that the Brazilian people gave (still give) to ‘health’
turned into constitutional right in Articles 6, 196 to 200 of the 1988 Constitution, and
accompanying federal statutes. Of particular importance for this part of the paper are
Articles 6, 196 and 200 of the Constitution, and Article 3 of the Law 8080/1990:
Article 6: Education, health, work, housing, leisure, security, social security,
protection of motherhood and childhood, and assistance to the destitute, are social
rights, as set forth by this Constitution.
Article 196: Health is a right of all and a duty of the State and shall be guaranteed
by means of social and economic policies aimed at reducing the risk of illness and
other hazards and at the universal and equal access to actions and services for its
promotion, protection and recovery.
Article 200: It is incumbent upon the unified health system, in addition to other
duties, as set forth by the law: II. To carry out actions of sanitary and
epidemiologic vigilance; IV. To [implement] basic sanitation actions; VIII. to
cooperate in the preservation of the environment, including that of the workplace.
Article 3: Health is determined by factors such as food, housing, sanitation,
environment, employment, income, education, transportation, leisure, and access
to essential goods and services (Law 8080/1990)
The Constitution makes no explicit reference to the term ‘social determinants’, but a
combined reading of the above-mentioned articles show clear connections with the
26
supra note 23
CNRS (Comissão Nacional da Reforma Sanitária). Documentos I. Rio de Janeiro: CNRS; 1987
28
ibid
27
Regiane Garcia
8 University of British Columbia, Faculty of Law
Ph.D. candidate
established understanding of the concepts SDH and health equity. Specifically, health is a
fundamental social value for the Brazilian people (Article 6) and a complex social
phenomenon influenced by a vast array of social factors (Law 8080/1990, Article 3) that
requires intersectoral policies as well as universal and equal access to actions to health
promotion and prevention and to services for health recovery (Articles 196 and 200).29
Moreover, by uttering universal and equal access to actions and services (Article 196)
and the [reduction of] social and regional inequalities as a fundamental objective of
Brazil (Constitution, Article 3, III), the Constitution sets forth an ambitious social justice
agenda for health policies and health interventions to strive for. This understanding
mirrors the recommendations of the VIII Health Conference of 1986, in particular, that
health is the outcome of social conditions; inequitable access to social conditions leads to
health inequities. As well, the recommendation that it is a government obligation to
create a national health system to provide universal and comprehensive health services
and actions to ensure Brazilians have the highest attainable state of physical and mental
health and wellbeing.
It is hard to overstate the importance and legal commitment that the Brazilian people and
the 1988 Brazilian Constitution gave to ‘health’ by including the right to health among
the fundamental values of the Brazilian people, and prescribing steps for its realization.
Steps include foster and support intersectoral actions at local, regional, and national
levels to tackle the social determinants of health and incorporate health concerns into
policies beyond the habitual realm of health departments (like education, transportation,
agriculture and housing, etc.). Furthermore, it is worth recollecting that in the context of
Brazil’s legal system, the constitutional framework offers more than mere aspirational
goals and a conceptual framework linking health, social conditions, health equity and
public governance.30 As referred to above, Brazil’s legal system is based on a hierarchy
of law, and the 1988 Federal Constitution is the supreme law of the land, and ultimate
source of authority in Brazil. Following Ferraz & Vieira, the paper agrees that Brazil’s
29
O. Ferraz and F. Sulpino, “Direito à Saúde, Políticas Públicas e Desigualdades Sociais no Brasil:
Eqüidade como Princípio Fundamental” (2008) Working serie papers. Online:
http://ssrn.com/abstract=1137872 [Portuguese] [last accessed on May 24, 2013]
30
ibid
Regiane Garcia
9 University of British Columbia, Faculty of Law
Ph.D. candidate
Constitution does provide a conceptual framework for programmatic action, but the
constitutional document also imposes legal obligations on political actors for designing
and implementing policies towards attaining equal opportunity to be healthy.31 In the case
Brazil, government obligations necessarily require intersectoral actions addressing the
social causes of disease and services in the event of illness (Article 196). In addition to
imposing obligations on the government, as Solar & Irwin rightly note, human rights,
(constitutional rights in the case of Brazil), works as criteria for assessing policy
implementation. In other words, “[r]ights concepts and standards provide an instrument
for turning diffuse social demand into focused legal and political claims, as well as a set
of criteria by which to evaluate the performance of political authorities in promoting
people’s well-being and creating conditions for equitable enjoyment of the fruits of
development.”32 In the case of Brazil, participation should be measured in terms of equity
within the process and its outcomes, the re-distribution of social determinants and
changes in the underlying causes of unfair distribution.
Brazil’s Health System Law: Community Participation, SDH and Health Equity
Article 198 of the Constitution specifically orders ‘participation of the community’ in the
organization of the national heath system:
Article 198: Health actions and public services integrate a regionalized and
hierarchical network and constitute a single system, organized according to the
following directives:
Idecentralization, with a single management at each level of government
IIfull service, priority being given to preventive actions, without prejudice
to treatment
IIIparticipation of the community.
Two sets of federal legislation gave effect to the articles 196 and 198: 1) Law 8.080 of
199033 established Brazil’s Sistema Único de Saúde – SUS (Brazil’s national health
system), and structured the goals, management, and jurisdiction of the system. Following
31
ibid
Solar and Irwin supra note 3 refer to the Global Right to Health and Health Care Campaign of the
People’s Health Movement. http://phmovement.org/
33
Enacted on September 19th of 1990. Online: http://www.planalto.gov.br/ccivil_03/leis/L8080.htm [in
Portuguese] [last accessed on May 16, 2013]
32
Regiane Garcia
10 University of British Columbia, Faculty of Law
Ph.D. candidate
the constitutional Articles 196 and 198, the statute determined the following fundamental
characteristics for the SUS: universality, comprehensiveness, equity, and community
participation. 2) Law 8.142 of 199034 complemented the previous statute, specifying
community participation in the management of the system and the resource transfer
across the federal, state and municipal governments. In terms of community participation,
the statute established health conferences and health councils for community participation
in the health system at the three levels of government, giving them deliberative and
supervisory power. An in-depth discussion of the ins-and-outs of participatory
mechanisms is outside the scope of this paper. For the sake of clarity, however, some
brief background information about the structure of health conferences and councils is in
order. Health conferences are temporary participatory mechanisms happening every four
years, and consist of a series of conferences starting with a round of municipal
conferences, followed by state conferences, and ending with a national conference. The
objective of the conferences is to assess the situation of the health system in the
corresponding jurisdiction and discuss and deliberate on directives to be proposed to the
respective government for its health action plan. Health councils are permanent
deliberative bodies at each level of government, and their objectives are to formulate
health strategies to implement the government action plan, as well as monitor the
implementation of health policies in the corresponding jurisdiction. The structure of
health councils is paired for voting purposes as, 25% manager representatives (public and
private providers); 25% health professional representatives, and 50% user
representatives. As for the implementation of participatory mechanisms, Brazil reformed
its health system in the 1990s to put in place the necessary institutional structures to
fulfill the constitutional and statutory mandates for community participation in the
organization of the SUS. As part of the strategy to ensure the creation of participatory
mechanisms, Law 8.142/1990 tied inter-governmental financial transfers to the existence
of operating health councils,35 and as result, health councils were created in every state
and in every municipality of Brazil. To date, Brazil has a national health council, 26 state
34
Enacted on December 28th of 1990. Online: http://www.planalto.gov.br/ccivil_03/leis/l8142.htm [in
Portuguese] [last accessed on May 16, 2013]
35
Law no. 8.142, article 4, II: “In order to receive the resources mentioned in Art. 3 of this Law, the
Municipalities, the States and the Federal District must have (II) a Health Council (…)”
Regiane Garcia
11 University of British Columbia, Faculty of Law
Ph.D. candidate
councils (a council for each state), one federal district council, and 5,565 municipal
health councils (a council for each municipality), and over 100,000 citizen councilors
acting in health councils across Brazil. With respect to the health conferences, since 1990,
there has been five series of conferences; in 1992, 1996, 2003, 2007, and 2011. The
conferences have gathered thousands of participants, for example, the last series of health
conferences, the 14th National Health Conference held in 2011, had 4,375 representatives
of municipal councils and 27 representatives of state and federal district councils.36
For the purpose of this paper, it is important to underline that the statutes referred to
above make no specific indication of health councils and conferences as a means to act
on the social determinants to advance health equity. Notwithstanding the lack of explicit
reference, health councils and conferences should be seen in light of the preceding
discussion on the right to health, and Brazil’s 1988 Federal Constitution as the supreme
law of the land, and the ultimate source of authority in the country. In other words, health
councils and conferences are subject to the directives of Law 8080/1990 as well as to the
constitutional directives established for the SUS. Amongst the directives are: ensuring
intersectoral policies for health promotion and prevention (articles 196, Constitution)
with the goal of reducing health inequalities within the country (article 3, Constitution). It
is equally important to highlight that health councils and conferences are mandated to
hold the government to account for undertaking (or for not undertaking) steps towards the
full realization of the right to health (article 1, parag 2, Law 8142/1990); steps that have
been laid out in the constitutional Articles 196 & 198 and regulatory statutes abovementioned. Therefore, reiterating Solar & Irwin’s remark on the purpose of rights,
Articles 196 and 198 and corresponding regulatory statutes, thus, set out the standards by
which the structure of the health system, and in turn, the structure of health councils and
conferences should be designed and implemented. More importantly for the purpose of
this paper, and the key message of this section, is that the right to health sets out the
standards by which health councils and conferences should be evaluated: intersectoral
actions to address social determinants, reduce health inequality within the country, and
36
Ministerio da Saude. Online http://www.conselho.saude.gov.br/14cns/docs/04_dez_carta_final.pdf
Regiane Garcia
12 University of British Columbia, Faculty of Law
Ph.D. candidate
advance social justice.
II – Right to Health, Participation and SDH - A Brief Overview of the International
Debate
In the context of the right-to-health literature, the principle of community participation in
the health system was first articulated in 1978 at the first International Conference on
Primary Health Care in Alma-Ata, Kazakhstan, an event of paramount importance for
population health.37 Since the Alma-Ata Declaration, community participation in the
health arena has been widely accepted as central for the operationalization and realization
of the right to health.38 General Comment 14 (GC 14) elaborates why participation is
important and for what purpose: participation of marginalized populations provides them
with an opportunity to reshape the social construction of health policies according to their
needs, improve their health, and ultimately, reduce health inequity among more and less
privileged social groups.39 Key messages of GC 14 include: social inclusion of
marginalized groups; inclusion of neglected health-related needs; and reduction of health
inequities. Despite its conceptual relevance, GC 14, however, provides no practical
guidance on steps to put participation into practice.40 Hunt & Backman further elaborated
on practical steps by placing on States the “obligation to establish institutional
arrangements for active and informed participation of all relevant stakeholders, including
disadvantaged communities.”41 In addition to including marginalized communities in
participatory processes, De Vos and colleagues understand participation as a mechanism
of accountability “through which governments explain and justify, to rights-holders and
37
Declaration of Alma-Ata 1978. Online: http://www.who.int/hpr/NPH/docs/declaration_almaata.pdf.
Article 4 states: “people have the right and duty to participate individually and collectively in the planning
and implementation of their health care.”
38
See for example, A. E. Yamin, “Suffering and powerlessness: the significance of promoting participation
in rights-based approaches to health” (2009) Health and Human Rights 11(1):5-22; De Vos; Calvo, etc
39
CG 14, paragraphs 11 and 54 assert that direct citizen participation in setting priorities, making decisions,
planning, implementing and evaluating strategies at the community, national and international levels is
critical for the effectiveness of health systems able to deal with societal factors that determine good health.
40
S. Anand, “The concern for equity in health” (2002) J Epidemiol Community Health 56:485–7
41
P. Hunt and G. Backman, “Health systems and the right to the highest attainable standard of health,”
Health and Human Rights: An International Journal 10/1 (2008), pp. 81–92
Regiane Garcia
13 University of British Columbia, Faculty of Law
Ph.D. candidate
others, how they have fulfilled or failed to fulfill obligations regarding participation”.42
De Vos et al further qualify the accountability process:
In the context of the right to health, participation requires an accessible, fair,
transparent, and continuous process in order to ensure adequate accountability.
The means of participation should be accessible to different groups; fairness
dictates that all groups should have an equal opportunity to participate. Through a
continuous monitoring process, transparency allows participants to make the most
informed decisions. Moreover, the human rights framework that has been
popularized by Paul Hunt stresses the crucial role of the state in respecting,
protecting, and fulfilling the right to health. This human rights framework
therefore requires independent accountability mechanisms.43
The Brazilian framework makes explicit reference to accountability in article 3 of Law
8142/1990 establishing as a key function of health councils monitor the implementation
of health policies, including concerning economic and finance issues. Alicia Yamin adds
another dimension to participation in a right to health framework: empowerment as
crucial to operationalizing the right to health and making the right actually work for
people’s lives.44 In a right to health framework, Yamin suggests that participation is
intricately related to empowerment of people, meaning ‘the locus of decision-making
about health shifts to the people whose health status is at issue’. Similarly, Solar & Irwin
propose “[e]mpowerment is inseparably linked to marginalized and dominated
communities gaining effective control over the political and economic processes that
affect their well-being.45 In Yamin and Solar & Irwin’s view, the fundamental goal of the
right to health is to ensure social conditions and genuine opportunities for historically
disadvantaged and disempowered groups to “achieve the greatest possible control over ...
42
P. De Vos et. al., “Health through people’s empowerment: A rights-based approach to participation”
(2009) Health and Human Rights: An International Journal, North America, 1118 08, pp. 26
43
ibid
44
Yamin supra note 38
45
supra note 3, pp 59
Regiane Garcia
14 University of British Columbia, Faculty of Law
46
Ph.D. candidate
their health”. “Increased control over the major factors that influence their health is an
indispensable component of individuals’ and communities’ broader capacity to make
decisions about how they wish to live.”47 In this way, empowerment, hence, becomes a
central dimension to the operationalization and realization of the right to health.48
It is important to reiterate that “[h]uman rights norms concern processes as well as
outcomes”, and a key outcome of participatory process in a right to health framework is
to ensure that disempowered communities gain “effective control over the political and
economic processes that affect their well-being”.49 In the case of Brazil, the Constitution
makes no reference to empowerment. But in light of participation being part of the right
to health, and the right to health resulted from the struggles of the Movimento Sanitarista
for social inclusion, power sharing, and social change, it seems plausible to assume that
empowerment is one of the expected outcomes of participation in Brazil.
As we can see, the international literature on the right-to-health has made significant
conceptual contributions to the knowledge about community participation, SDH, and its
relationship to the operationalization and realization of the right to health. For example,
this literature has showed that health systems should play an active role in reducing
health inequities not only by offering equitable access to medical services but also by
promoting intersectoral action involving other policy bodies to improve the health of
destitute communities. However, despite the recognition that “human rights norms
concern processes as well as outcomes”, much of the literature has been fairly
conceptually focused failing to develop frameworks to evaluate participation mechanisms
to advance those concepts.50 The next section presents a growing body of political
science empirical work from Brazil that might shed some light on how to evaluate
inclusion, empowerment and redistribution of participatory mechanisms in the context of
46
A. Yamin, “Defining Questions: Situating Issues of Power in the Formulation of a Right to Health under
International Law” (1996) Human Rights Quarterly, 18 (2):398-438. Cited in Solar and Irwin supra note 3
47
supra note 3, pp 13
48
cite Hunt, Hunt and Backman, Farmer, Yamin, De Vos et al., etc
49
supra note 3, pp 59
50
S. F. Halabi, "Participation and the Right to Health: Lessons from Indonesia (2009) Health and Human.
Rights, Vol . 11, No. 1, pp. 49-59
Regiane Garcia
15 University of British Columbia, Faculty of Law
Ph.D. candidate
health. In particular, those studies are attempting to develop frameworks to assess
whether and how traditionally marginalized groups are meaningfully included in the
process, and whether and to what extent marginalized groups have access to the outcomes
of participatory processes. Of particular interest for this paper are the connections among
different dimensions such as inclusion, influence and outcomes, typically studied
separately, but this empirical body of work is attempting to connect.
Section III – Evaluating Health Councils in Brazil – Strengths and Shortcomings of
Brazilian Studies
There exist a vast body of empirical work assessing Brazil’s participatory mechanisms in
general,51 and Brazil’s health councils in particular.52 In order to limit this paper to a
succinct discussion, this section focuses primarily on the work of Vera Coelho and her
colleagues, for two main reasons. First, Coelho’s project attempts to connect fragmented
theoretical views on participation, that combined, as Coelho et al. suggest, can help with
a more nuanced evaluation of participation in the context of health in Brazil. Second,
because Coelho’s inquiries are associated with the inquiries of scholars examining
participation from the right-to-health lens; concerns such as inclusion of marginalized
populations and reduction of health inequalities within more and less advantaged regions
in Sao Paulo.
Coelho’s empirical work and connections with the right-to-health literature
Coelho and colleagues note that empirical scholarly work has evaluated new participatory
mechanisms from three theoretical lens: deliberative democratic theory, deepen
democracy, and participatory governance. In summary, the group points out that at the
core of studies associated with deliberative democratic theory is the interest in ways to
assess, and ultimately improve, the quality of the process. This includes ways to assess
51
For a review of theoretical and empirical studies on Brazil’s participatory mechanism in general, A.
Lavalle and C. Araujo, “O futuro da representação: nota introdutória” (2006) Lua Nova: Revista de Cultura
e Política. São Paulo: n. 67, pp. 9-13 [Portuguese]
52
For a review of studies of Brazil’s participatory health arena, see for example, M. Vieira and M. C.
Calvo, “Avaliação das condições de atuação de Conselhos Municipais de Saúde no Estado de Santa
Catarina, Brasil” (2011) Cad. Saúde Pública. 2011, vol.27, n.12, pp. 2315-2326 [Portuguese] Regiane Garcia
16 University of British Columbia, Faculty of Law
Ph.D. candidate
the presence of all affected individuals, the quality and relevance of the information
shared during the process, rules for agenda setting, and so forth. Studies associated with
deepen democracy are primarily concerned with the potential and degree of civil society
mobilization and capacity to build broad coalitions to frame new policy agendas. Deepen
democracy studies underline the relevance of the processes of identity formation, their
role in the mechanisms of collective action, as well as the importance of associativism
and social capital for the success of participation. Finally, participatory governance
scholars are predominantly interested in developing adequate frameworks for
intersectoral collaboration between those new participatory political arenas and
government bodies to ensure that the policy outcomes of those new policy arenas are
accurately implemented.
In line with scholars examining new democratic arenas in the South, Coelho and
colleagues suggest that deliberative democratic theory, deepen democracy, and
participatory governance are not mutually exclusive. Actually, Coelho et al suggest that
those three theoretical lenses complement each other. In their view, “mobilization
without design increases the risks that more organized groups will ‘capture’ the
processes, while redesign without social mobilization can easily lead to the adoption of
formal procedures that contribute to the inhibition of a more spontaneous and vibrant
participation.”53 Coelho’s joint consideration of institutional participation and adequate
coordination (inclusion and coordination among different sectors) and social mobilization
(empowerment process) seems in tune with the right-to-health and SDH literature. The
right-to-health literature suggests assessment of participation in a right-to-health
framework requires a thorough analysis of structural organizations with respect to the
inclusion of marginalized populations in the organization of the health system, as well as
an analysis of how the health system cooperates with other sectors. Alicia Yamin’s
articulation of the interplay between politics and empowerment is relevant:
Importantly, the empowerment of disadvantaged communities, as we understand
it, is inseparably intertwined with principles of state responsibility. This point has
fundamental implications for policy-making on SDH. The empowerment of
53
Coelho et al. supra note 7, pp 176
Regiane Garcia
17 University of British Columbia, Faculty of Law
Ph.D. candidate
marginalized communities is not a psychological process unfolding in a private
sphere separate from politics. Empowerment happens in ongoing engagement
with the political, and the deepening of that engagement is an indicator that
empowerment is real. The state bears responsibility for creating spaces and
conditions of participation that can enable vulnerable and marginalized
communities to achieve increased control over the material, social and political
determinants of their own well-being.54
Human rights norms, therefore, stipulate that public health systems need to ensure
mechanisms for institutional citizen participation, but the human rights literature also
notes that the success of citizen participation strongly depends on the degree to which
organized demand from civil society holds political leaders accountable.55 In a human
rights framework, the notion of organized civil society is intrinsically connected with the
notion of empowerment through collective action to gain power over resources, as well as
individuals’ consciousness and power to express and act on his/her own desires.56 In this
way, a human rights assessment of participatory processes requires an examination of
both procedures for inclusion along with the degree of individual and collective
empowerment of marginalized groups outside of the institutional arena. Therefore,
Coelho et al’s framework seems particularly fitting to examine participation concerns
raised by the right-to-health literature, namely: a) the inclusion of the most vulnerable
and least mobilized groups (procedural equality - deliberative democratic theory); b)
improved social capital (connections with relevant actors - deepen democracy); and c)
proactive participation and a more equitable distribution of public health resources
(participatory governance).
A Way Forward - Adding a Social Determinants Lens to Coelho’s empirical work
Coelho’s empirical work assesses the outcomes of health councils based on more or less
equitable distribution of public health resources. However, assessing participation on the
grounds of more or less equitable distribution of and access to health resources disregards
a central concern of the right-to-health and social determinants literature: the roots causes
of health inequities.
54
supra note 3, pp 59
ibid pp 58
56
Yamin supra note 38 55
Regiane Garcia
18 University of British Columbia, Faculty of Law
Ph.D. candidate
There is a robust body of evidence on the right-to-health in general, and on social
determinants in particular, that unequal access to social resources (like education,
employment and political influence) and to material resources (like income and property)
affect people’s health and wellbeing.57 Therefore, it is crucial that health councils focus
on more equitable distribution of public health resources. Nonetheless, evidence has
shown that to change the pattern of unequal distribution of health resources, it is key to
address the underlying processes that generate the unequal distribution of health-related
resources. More specifically, socio-economic and political contexts together with their
structural arrangements (like governance; social and macro-economic policies; cultural
and social values) produces and perpetuates ‘social stratification’ that creates different
exposure and vulnerability to health damaging conditions and different opportunities to
access social and material resources.58 In other words, “[s]ocial stratification determines
different consequences of ill health for more and less advantaged groups (including
economic and social consequences, as well differential health outcomes per se).” 59
Therefore, the roots causes of health inequities are (re)produced by the social processes
underlying the unequal distribution of social factors between groups differently situated
on the socio-economic ladder.60 “Health inequities flow from patterns of social
stratification - that is, from the systematically unequal distribution of power, prestige and
resources among groups in society”.61 At the core of participation in a right to health
framework is to act on SDH in a policy continuum – that means, addressing the
differential access to health services and actions; targeting differential vulnerabilities and
exposures for disadvantaged social groups; and, ultimately, changing the patterns of
social stratification that determine more or less access to resources. Braveman and
colleagues refer to upstream and downstream conditions, and provide a helpful
illustration of actions on the consequences (unfair access to) and on pathways that shape
the unfair distribution of social and material resources:
57
H. Graham, Social Determinants and their Unequal Distribution: Clarifying Policy Understandings:
(2004) The Milbank Quarterly 82 (1), pp 107
58
supra note 3, pp 5
59
ibid
60
supra note 57, pp107
61
supra note 3, pp 20
Regiane Garcia
19 University of British Columbia, Faculty of Law
Ph.D. candidate
(…) Consider people living near a river who become ill from drinking water
contaminated by toxic chemicals originating from a factory located upstream.
Although drinking the contaminated water is the most proximate or downstream
cause of illness, the more fundamental (yet potentially less evident, given its
temporal and physical distance from those affected) cause is the upstream
dumping of chemicals. A downstream remedy might recommend that individuals
buy filters to treat the contaminated water before drinking; because more affluent
individuals could better afford the filters or bottled water, socioeconomic
disparities in illness would be expected. The upstream solution, focused on the
source of contamination, would end the factory’s dumping. Although these
concepts may make intuitive sense, the causal pathways linking upstream
determinants with downstream determinants, and ultimately with health, are
typically long and complex, often involving multiple intervening and potentially
interacting factors along the way. This complexity generally makes it easier to
study— and address—downstream determinants, at the risk of failing to address
fundamental causes. (Braveman et al, 2011, at 383)
This example suggests that actions on ‘downstream determinants’ (like access to
resources) might help more affluent individuals but not necessarily less affluent
individuals, but ultimately, downstream interventions are unable to reducing health
disparities that structural arrangements create and perpetuate. Benzeval, Judge &
Whitehead’s criteria to assess the obligations of health system in confronting inequity
might offer a practical way of thinking about evaluating downstream and upstream
determinants:
(1) to ensure that resources are distributed between areas in proportion to their
relative needs; (2) to respond appropriately to the health care needs of different
social groups; and (3) to take the lead in encouraging a wider and more strategic
approach to developing healthy public policies at both the national and local level,
to promote equity in health and social justice.
Following the three obligations, a comprehensive framework for assessing participation
in the context of health in Brazil would require a means to assess whether the policy
outcomes have: (1) ensured that health resources are distributed between more and less
privileged regions of the city; (2) responded to the health-related needs of different social
groups; and (3) taken the lead in boosting connections with sectors beyond the health
department.
Concluding Comments
Regiane Garcia
20 University of British Columbia, Faculty of Law
Ph.D. candidate
The paper presented Brazil’s community participation in the organization of the country’s
health system as an example of an institutional structure together with social mobilization
to address the social determinants of health on a national scale. Presenting the legal
framework and its historical roots, the paper intended to incite discussion as to the
specific obligations set forth by the Constitution, and the constitutional framers, when
structuring community participation in a right-to-health framework. This exploratory
piece attempted to show that in Brazil, participation was created as a social determinant
intervention to improve health equity. As a SDH intervention, both the process and
outcomes of participation should be evaluated in terms of inclusion of marginalized
groups and their influence over the process, as well as in terms of the nature and quality
of the outcomes associated with participation. A group of Brazilian researchers have
proposed a framework that seems particularly fitting to examine participation as a social
determinant intervention, including ways to assess the inclusion of the most vulnerable
and least mobilized groups; connections with relevant actors; and distribution of public
health resources. But the framework has mostly focused on the access dimension of
health-related resources, overlooking, thus, the roots cause giving rise to unequal access
to health-related resources. As a way to complement the framework, the paper has
suggested that social determinants concepts can enhance Brazilian empirical studies
assessing participation in the context of the right to health in Brazil.
Finally, it is important to keep in mind that it is an exploratory paper, not a
comprehensive analysis. Further research is needed in order to answer how the concepts
of social determinants and health equity should inform the actions of Brazil’s health
councils. Moreover, further inquiry is also needed about how to include structural social
determinants dimensions into Coelho et al.’s framework. In conclusion, the key message
this paper has attempted to convey is that: combined efforts from theoretical and
empirical work on human rights, social determinants, deliberative democratic, deepen
democracy and participatory governance have the potential to improve the quality of
participatory processes, and evaluate the extent to which the outcomes of those processes
actually address both the social factors influencing health and the structural processes
shaping their unequal distribution.