Ethical Issues in Community Based Monitoring of health programmes Reflections from India
Item
- Title
-
Ethical Issues in
Community Based Monitoring of health programmes
Reflections from India - extracted text
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Ethical iissoes m
CemEWJirfty Based fidtonfecrrng
of Health Programmes
Reflections from India
Renu Khanna
Foreword
The field of International Development is a rapidly growing and challenging field. While the idea
of poverty alleviation and economic growth has for remained a central concern for economists,
concerns like income inequality, social inclusion, participation, transparency and accountability
have become increasingly common ideas in many development for a including the World Bank.
As these ideas are embraced and become integrated in practical development interventions, it
is also necessary to review and understand how these ideas emerged or were first articulated.
While some ideas came from academics and universities, many ideas and concepts became
accepted as a result of the persistent struggles of practitioners in the field. COPASAH
(Community of Practitioners on Accountability and Social Action in Health) is a collective of
practitioners who have been developing these ideas and applying these principles in the field
of health governance in different places around the world. In these Issue Papers COPASAH
members have deliberated over some of their key concerns to draw lessons for future practice.
Health care is a contested area of governance and public policy action. It is also an area of
immediate concern being featured prominently in the erstwhile MDGs and in the contemporary
SDGs. In this series of Issue Papers, COPASAH members share their insights in critical issues
especially related to the inclusion and participation of the poor and marginalised communities
and how these may be negotiated or kept centre stage within contemporary development
practice. The Issue Papers draw upon the years of practice of COPASAH members and are
practical and insightful at the same time. We are sure these will provide important pointers
for practice for any development practitioner in the field of heath governance. On behalf of
COPASAH we look forward to your feedback and suggestions to continue the discussions and
sharpen our practice.
About the Author
Renu Khanna is a women’s health advocate in India who has been engaged in public health for
over 30 years. She is a Founder of SAHAJ a community based organization situated in Vadodara
Gujarat in western India. SAHAJ has been working on issues of the urban poor, child rights,
adolescents’ citizenship, women’s health since 1984. Renu is also a Steering Committee member
of CommonHealth: Coalition of Maternal-Neonatal Health and Safe Abortion, and COPASAH:
Community of Practitioners for Social Action in Health, both of which are engaged in social
accountability and peoples’ participation in health.
Ethical Issues in Community Based Monitoring of Health Programmes: Reflections from India
This issue paper is part of a series of papers commissioned by the Community of Practitioners on
Accountability and Social Action in Health (COPASAH).
Acknowledgements
The contents of this paper draw from my involvement since 2007 inthe Community Based Moni
toring and Planning (CBMP) within the National Rural Health Mission. Insights gained from being
part of the evaluation teams of the pilot phase of CBMP (2008-10) and the current programme
in Maharashtra have contributed to the observations made in this paper. Special thanks to Dr
Abhay Shukla (Coordinator, Maharashtra Community Based Monitoring), Dr. Abhijit Das (CHSJ,
members of AGCA, NRHM) and Dr. Rakhal Gaitonde (Project Manager, Community Action for
Health, Tamilnadu (SOCHARA) for engaging in many conversations on the issue. Thanks also to
Chinu Srinivasan for facilitating the reflection on the issue with the Tamil Nadu SOCHARA team,
comprising of Rakhal, Ameer, Suresh, Santosh and Naresh. Feedback from Marta Schaaf (Colum
bia University, New York) was valuable. Thanks to the reviewers, Dr. Mala Ramanathan (Achutha
Menon Centre for Health Social Sciences, Trivandrum), Prof. Lynn Freedman (Columbia Univer
sity, New York). Thank you for the feedback received from Marta Schaaf (Columbia) and Barbara
Kaim (a COPASAH Fellow Traveller). Heartfelt thanks to Anagha Pradhan and Laura Dean for
all the help rendered in the literature search, editing and formatting. Finally, thanks to the Open
Society Foundations for their overall support to COPASAH.
Cite as - Khanna R (2013). Ethical Issues in Community Based Monitoring of Health Programmes:
Reflections from India. SAHAJ, India and COPASAH
EXECUTIVE SUMMARY
The paper explores the many nuances of
Community Based Monitoring and Planning
and planning, whilst maintaining uniqueness,
within the National Rural Health Mission
community development and social action,
(NRHM). The NRHM was part of the
community based research, public health
interventions and social science research. The
Government of India’s strategy to achieve quality
health care.
intersects with several oth&r realms including
ethical principles of do no. harm, maximise
beneficence, autonomy and self- determination
the interests of those who are most vulnerable
and social justice, are explored within each
discipline. The final section, CBMP, power
and powerless. The discussions,emerging
relationships and ethical issues, looks at the
from a series of conversations between a
various sets of relationships within the process
few community monitoring practitioners in
of community based monitoring and planning,
India - are targeted at a wider community of
the associated differing power dynamics and
practitioners who are involved in designing and
the ethical issues emerging in each set of
implementing such programmes. It is hoped
relationships.
The exploration hopes to benefit and protect
that these discussions can be taken further by
practitioners and can assist them in ensuring
Syntheses of the aforementioned sections
practice that is underlined by a clear set of
highlight several factors that need consideration
ethical principles.
in the process of community based monitoring
and planning; primarily that autonomy and
iv
The paper consists of three main subsections.
consent have different meanings when dealing
The initial section describes the implementation
with communities and not just individuals.
and the process of community monitoring.
Having said this, dealing with a community as
Section one, Community Based Monitoring and
opposed to individual often provides strength
Planning (CBMP) within the NRHM in India and
and protection to individuals. Conflicts around
related discourses concludes with reflections on
minimizing risks to individuals and promoting
how community based monitoring and planning
fits within the existing power discourse. Section
greater public good are discussed with several
two, Ethics of CBMP and related discourses
discusses the brief history of modern bioethics,
conflict between ethical principles that need to
going on to focus on the ethical principals in
and conflicting principles can be dealt with in
community action, the different research areas.
It elucidates how community based monitoring
a consistent manner. It is crucial for facilitating
examples in this paper. Thus, there is often
be identified so that guidelines can be developed
organisations to reflect upon their role and to
whom they are accountable to, such
are put foremost, Finally, to ens
it is vital that even though ethk
not be resolved sooner than later, it needs
documented.
Community monitoring is a unique a<
that requires different kinds of pi
as compared to Community
Practitioners need to develo
and codes of ethics. Howev<
guiding principles be?
. ■-
It can be suggested that the Communil
Practitioners need to
At a personal level and within te.
■
Promote a culture of reflexivity
discussion of dilemmas.
■
Reflect on how power operates in vario
situations and relationships. Recogni_
the dynamic nature of power and the
vulnerabilities within different relaf
■
Recognise discomfort when values are upj
disturbed.
>.. . .Sfi£ '
' i1.
1
Table of Contents
EXECUTIVE SUMMARY
iv
INTRODUCTION
1
COMMUNITY BASED MONITORING AND PLANNING WITHIN
3
1.
2.
THE NATIONAL RURAL HEALTH MISSION IN INDIA
3.
2.1
National Rural Health Mission
4
2.2
Community Based Monitoring and Planning
5
2.3.
Institutional Framework to Implement CBMP
7
2.4
Situating CBMP within the Discourse on Power
8
ETHICS OF CBMP AND RELATED DISCOURSES
9
3.1
Understanding Ethical Principles
10
3.2
CBMP as Community Development, Community Action
11
and Social Action
4.
3.3
CBMP as Community Based Research
11
3.4
CBMP as a Public Health Intervention
13
3.5
CBMP as Social Science Research
13
COMMUNITY BASED MONITORING AND PLANNING, POWER
RELATIONSHIPS AND ETHICAL ISSUES
17
4.1
Relationships in CBMP
18
4.2
People and the System: Ethical Issues
18
4.3
Ethical Issues in Relationships among CSOs and Communities
24
4.4
Ethical Issues in the State-Civil Society Relationships
27
5.
CONCLUSION AND THE WAY AHEAD
31
6.
REFERENCES
34
7.
LIST OF ABBREVIATIONS & GLOSSARY
37
vii
Practitioners engaged in community development
research that aims to bring about changes, with the
and social action face ethical dilemmas wherever
community as an equal partner in the process, are
they work. Some of these difficulties flow out of
central to many development programs (Kaim 2013,
the power inequalities between the facilitators
Mansuri and Rao 2013). The Government of India
and the community. These power imbalances are
also has acknowledged that communities play
further magnified in contexts of poverty. Another
a positive role in changing their situations and
set of issues arises due to power relations between
has incorporated involvement of communities in
communities and public systems and authorities,
ensuring quality health care as an integral part of
especially since changing or challenging these
the NRHM.
relations may be a purpose of various interventions.
Also, communities are not homogenous entities
This paper explores the emerging ethical issues
-within communities, there are more powerful
in Community Based Monitoring and Planning
sections and the less powerful ones. Facilitating
(CBMP) as implemented within India’s National
organizations have a responsibility to distinguish
Rural Health Mission. The paper discusses the
between these and act in the interest of the most
generic model of CBMP as conceptualized in
powerless. An additional complication arises when
the NRHM Implementation Plan and developed
ethical guidelines and principles are codified within
further by the Advisory Group on Community
several disciplines in research on individuals -
Action for NRHM. The section that describes
for example, in bioethics, social work and social
this concludes with situating CBMP within
science research, ethical guidelines for working
the discourse of power. The section, Ethics
with communities are still evolving.
of CBMP and related discourses draws upon
related literature: ahistory of modern ethics,
The term community participation is used
ethics in community action, public health ethics,
in various contexts- from public health to
and community based participatory research,
environmental conservation, water management,
social science research ethics, and framework
health rights, feminist action, and so on. It is
to evaluate accountability measures, and so on.
often loosely associated with the concept of
This is followed by the section; CBMP, power
empowerment’, and always associated with
relationships and ethical issues, partnerships
positive outcome (Homel et al undated; Kakde and
and it discusses the ethical concerns emerging
SATHI CEHAT team 2010; Thang Ngo 2009). The
from CBMP praxis in India. This section also
literature from the 1980s and 90s has increasing
explicates the sets of relationships and resultant
mention of the community’s involvement in
power imbalances within which ethical dilemmas
finding sustainable solutions to local problems
emerge. The contents are drawn out from the
(Rifkin 1986). The concept and practice of
conversations between individuals spearheading
community participation have evolved over the
the CBMP efforts in various States of India. Lastly,
years with communities moving from being
the paper proposes a set of guidelines for us as a
‘passive beneficiaries’ of development programmes
Community of Practitioners engaged in promoting
to becoming active agents of their development.
Social Accountability in the health sector.
Community mobilization and community based
2
MUNI I UKINU ANU
PLANNING WITHIN
NATIONAL RURAL
HEALTH MISSION
IN INDIA
deliveries and the Janani Suraksha Yojna1 for
2.1 National Rural Health
Mission (NRHM)
those below the poverty line
f)
mobile medical units
The NRHM was launched in 2005 with the
goal to improve the availability of and access to
Provide services to remote underserved areas
g)
quality health care. The Mission aimed to provide
Ensure provision of safe drinking water and
household toilets
universal access to equitable, affordable and quality
health care, which is accountable and responsive
In addition to the envisioned community
to the needs of the people. The NRHM sought
level outcomes, concrete service guarantees
to raise public spending on health from 0.9%
are specified in the NRHM Framework for
GrossDomestic Product (GDP) to 2-3% of the GDP.
Implementation2.
In order to ‘ undertake architectural correction of
the health system to enable it to effectively handle
In order to ensure that the vision and outcomes are
increased allocations and promote policies that
achieved, community ownership and participation
strengthen public health management and service
in the management is seen critical. Community
delivery in the country’(MoHFW 2005). The key
monitoring is seen as an important component of
areas that are identified for concert action within
what is termed as Community Action for achieving
the NRHM framework are:
these results.
□
Well-functioning health facilities.
□
Quality and accountability in the delivery of
drafted with significant inputs from civil society
health services.
organisations and health rights networks like the
Taking care of the needs of the poor and
Jan Swasthya Abhiyan (People's Health Movement
vulnerable sections of the society and their
in India). These groups bestowed in the policy the
□
□
The NRHM Framework for Implementation was
empowerment.
right to health as an inalienable right of all citizens,
Convergence for effectiveness and efficiency
which was previously contained in relevant rulings
between the health department and
of the Supreme Court as well as International
departments dealing with determinants of
Conventions to which India is a signatory. These
health.
rights were then incorporated in the monitoring
framework of the Mission as citizens’ entitlements
NRHM’s vision at the community level is to:
a)
to guaranteed basic health services.
Bring an increased awareness about preventive
health
b)
Place a trained worker with a drug kit for
common ailments
c)
Organise a monthly health day where services
related to maternal and child health (for
1
example, immunization, antenatal check-ups
and nutrition) would be available
d)
Assure good hospital care through
theavailability of doctors, drugs and quality
services at PHC/CHC level
e)
4
Provide improved facilities for institutional
2
Cash incentive provided to Below Poverty Line
women to deliver in health facilities - a major pillar of
maternal health policy in India
A few examples of cconcrete NRHM Service
Guarantees were: Skilled attendance at all Births,
Emergency Obstetric care, Basic neonatal care
for new born, Full coverage of services related to
childhood diseases / health conditions, Full coverage
of services related to maternal diseases / health
conditions, Full coverage of services related to low
vision and blindness due to refractive errors and
cataract, Full coverage for curative and restorative
services related to leprosy, Full coverage of diagnostic
and treatment services for tuberculosis
2.2 Community Based
Monitoring and Planning
(CBMP)
new forms of deliberation, consultation and/or
mobilisation designed to inform and to influence
larger institutions and policies’. Accountability
measures focus on enabling structures for good
There are different perceptions about the purpose
governance through changes in institutional
of Community Based Monitoring and Planning.
design. Civil society organisations participating in
Community Based Monitoring was envisioned by
NRHM clearly viewed CBMP as an accountability
the Government as a part of‘communitisation’
measure to increase the responsiveness of health
of health services in the NRHM implementation
institutions and policies.
framework.
Accountability, as proposed in the NRHM, was
Communitisation, as implemented by the
conceptualised as a three-pronged approach:
Northeastern state of Nagaland (Government
internal monitoring by the health system, periodic
of Nagaland 2013), in the post-conflict context,
surveys and studies by third party actors and
marked a paradigm shift in the system of
monitoring by communities including users of
governance. Communitisation was seen as
the services to thehealth system. The community
a partnership between the government and
monitoring process involves a three-way
communities to harness and strengthen social
partnership between:
capital of communities. It included:
1.
■
Transfer of ownership of public resources and
2.
assets
C
Control over service delivery
■
De centralisation, delegation, empowerment
and capacity building
Communitisation appears to draw from the
concepts of Participation and Accountability
as described by Gaventa (2002) - through
Healthcare providers and managers of the
health system.
Community, community based organizations
and NGOs
3.
Panchayati Raj Institutions comprising of
elected representatives.
Figure 1 shows the key elements of
‘communitisation’ and its impact on community
participation and accountability.
participation ‘poor people exercise voice through
Figure 1: Key elements of‘communication’ and its impact on community
participation and accountability
5
Process of Community Monitoring -The
Box i: Key Institutions for Community
Monitoring and Planning Committees are
Monitoring under NRHM
organized at the village, Primary Health Centre
Village Health, Nutrition and Sanitation
(PHC), Block, District and State levels. Each of
(VHNSC) Committee
these Committees has representatives from
The Primary Health Centre (PHC)
amongst the three stakeholder groups. The
Community Based Monitoring & Planning (CBMP)
framework places people at the centre of the
process for regularly assessing if the health needs
Monitoring and Planning Committee
■
The Block Monitoring and Planning
Committee
and rights of the community are fulfilled, especially
The District Monitoring and Planning
the most marginalised groups.
Committee
The State Monitoring and Planning
A significant design element in the structure, as
Committee
seen in Figure 1, is the inter-linkages between each
level of the Monitoring and Planning Committee.
Two or three members in the PHC Monitoring
and Planning Committee members represent the
Village Health Nutrition Sanitation committee
(VHNSC). A few members of the PHC Monitoring
Box 2: Involvement of Stakeholders in
Community Monitoring
The stakeholders play an integral role in
monitoring as:
Committee represent the PHC Committee in the
Members of committees at various levels.
Block Committee and so on. Table i,Processes
Members of the community who share
of Community Monitoring, lists out the process
their views during meetings. Each
and outcomes of community monitoring.
committee visits and reviews health
Box 2, Involvement of Stakeholders in Community
services / resources / documentations
Monitoring shows the involvement of stakeholders
appoints the members of small groups.
in community monitoring.
Participating in Jansunwais, Jansamvaads
Table 1: Processes of Community Monitoring
6
Process
Stakeholders involved
Outcome
1. Organizing the
Community
Village level
stakeholders
Formation of VHNSC
2. Capacity building of
Stakeholders
VHNSC
Identify issues related to health needs, coverage,
access, quality, effectiveness of health services,
behaviour and the presence of health care
personnel at service points, possible denial of
quality care services, negligence
3. Assessing health
status, access
to health care,
health needs in a
participatory way
(initial and periodic)
VNHSC, community,
village level health
system
Village meetings, interviews with users of services,
scrutiny of village health register and other
records.
4. Unresolved issues
according to the
report card discussed
in higher level
committee
PHC, block, district level
monitoring committees
Production by VNHSC of village health report card
which forms the basis for dialogue with thehealth
systemand other stakeholders.
Issues that are not resolved through actions
at one level are presented to ahigher level
Committee. The issues are that are not resolved
are presented to a higher committee, and some
concerns eventually reach state level.
The Issues are raised through such committee
to present in various monitoring committees the
meetings.
community concerns, experiences and suggestions
Community Based Planning is emphasised within
functioning.
regarding improving public health system
NRHM. Village Health Action plans are prepared
by the VHNSC and submitted to the Gram
As resource groups for capacity building
Panchayat (Village Council). These are supposed to
and facilitation, NGOs and Community-
be the basic unit of decentralised and participatory
BasedOrganisations(CBOs) would have the
planning - District Health Plans are supposed to
responsibility for overall facilitation of the initial
be created through this bottom-up approach.
process of committee formation and capacity
A provision of'Untied Funds’ has been made at
building of Community Monitoring committees. In
different levels - the VHNSC and Sub-Centres
order to shift the balance of power, a considerable
have been provided Rs. 10,000 (USD 200) per
amount of community mobilisation, capacity
year to undertake expenses to improve delivery of
building and facilitation are required before each
health services, each PHC is provided Rs. 175,000
level of Monitoring and Planning Committees
(USD 2750) per year (Rs. 25,000 Untied Fund, Rs.
begin to do their job. After the Committees
50,000 Annual Maintenance Grant and Rs. 100,000
are formed, they have to be oriented to their
RogiKalyanSamiti - Patients Welfare Committee
roles, the framework of participatory democracy
- fund) and the facility level RogiKalyanSamiti
and the intrinsic values within which CBMP is
comprising of community representatives and
being implemented. Build skills of participatory
health systems representatives is authorised to
enquiry and data collection and analysis. Enable
spend this money. NRHM has provided the space
communication and dialogue with key stakeholders
for community involvement in health planning.
based on the systematic enquiries. Facilitate
evidence-based advocacy directed at appropriate
2.3 Institutional Framework to
Implement CBMP
policy and decision makers, amplifying the voices
of the marginalised.
As agencies helping to carry out collection
To enable this structure, NGOs or Civil Society
of information, NGOs and CBOs contribute
Organisations have a crucial role as resource
tothe collection of information relevant to the
organizations and facilitators of CBMP within an
monitoring process at all levels from the village to
institutional framework. To enable community
state.
monitoring, the roles envisaged for civil society
organisations are:
®
Members of monitoring committees
■
Be resource groups for capacity building and
facilitation
■
Help to carry out an independent collection of
information
As members of monitoring committees, social
organizations working in close, regular contact with
communities on health related issues, especially
from a rights-based perspective, would be able
An entire edifice of Civil Society Organisations beginning from the State Nodal Organisation,
District Nodal Organisations, Block Coordinating
Organisations and other field level community
based organisations, people’s movements and
voluntary organizations - was envisaged to
facilitate CBMP. A State Mentoring Group and
a corresponding District Mentoring Group then
supported this network of organisations. Box 3
provides a summary of the role of NGOs and CBOs
as envisaged under NRHM CBM.
7
Box 3: The role of NGOs and CBOs as
envisaged under NRHM CBM
■
CBMP attempts to change the relationships of the;
■
Relatively powerless (and voiceless) users or
Members of the committees’ make are
'beneficiaries’, especially the marginalised
commendation for the community,
groups - health system represented by health
where they present the communities’
care providers and health administrators
concerns, experiences, and suggestions
■
from a rights perspective
community based organisations and groups.
■
As resource groups for capacity building
and facilitation, orient committees
Facilitating nodal NGOs/CSOs, and the local
Participation of civil society organisations in
CBMP at different levels.
■
The Health Department that has both
to their roles, and the framework
mandated CBMP and provides funds for its
of participatory democracy and the
implementation as well as CSOs
intrinsic values within which CBMP
■
is implemented. Developing skills of
During the early years of implementation of CBMP,
participatory enquiry and data collection
the Government, district programme managers,
and analysis
NGOs and the community were excited about
Collecting and analysing information in a
the CBMP process but for very different reasons.
participatory manner
These differing expectations of the process are a
Communicating with stakeholders
■
Evidence-based advocacy to selected
stakeholders
source of many conflicts. It is in such situations
of conflict that power takes on an important hue
and a number of ethical considerations arise. As
mentioned, some stakeholders see CBMP as a
component of communitisation and others as a
2.4 Situating CBMP within the
Discourse on Power
8
mechanism to enforce accountability. Furthermore,
some perceive it as a mechanism to enforce
"discipline” among public health staff lower down
The essence of CBMP as conceptualised within
the hierarchy. Whilst both communitisation and
the NRHM is to promote citizenship and
accountability may occur simultaneously, the
accountability. This implies a necessary shift in
nature and perception of citizen participation differ
the balance of power between several sets of
in these two cases. This too could have ethical
actors and stakeholders. It is within these sets of
implications. The aim of this exercise of examining
relationships of power that ethical issues related to
the ethical issues within CBMP is to protect the
community monitoring are located and examined.
interests of the most vulnerable and powerless.
3.1 Understanding Ethical
Principles
in India, the Quinacrine Sterilisation (QS) debate
Ethics has its roots in the Greek word ethos’
anti-malarial drug was widely used in the 1990s
In times that are more recent and nearer home,
raised fresh ethical concerns. Quinacrine, an
which means character’ and is used to describe
in over 25 countries to carry out nonsurgical
guiding beliefs or ideals that characterise a
sterilisationson over 100,000 women. In 1998,
community or society. Other derivatives of‘ethos’
the Supreme Court of India banned the use
- ethicus and ethica - mean ‘moral philosophy’
of Quinacrine for sterilisations because the
and ‘moral character’. ‘Values’, ‘morality’ and
long-term effects on women are unknown
‘ethics’ are often confused (Merriam-Webster
and could be potentially harmful. In 2003, five
Dictionary 2013).
years after the ban, a study found that medical
practitioners were still using Quinacrine to sterilise
While values and morality are largely personal and
women (Mulay, Singh and Dasgupta 2003). The
individual, ethics are a product of society, a system
women interviewed did not know that QS was
of moral ideals that the society or community
unauthorised. Most said that they were not asked
believe in and aspire to follow. Ethics has to do
to sign any paper, or put any thumb impression
with standards of right and wrong as they apply to
signifying consent. Those who had signed did
relationships between individuals and groups such
not know what they had signed for. Women’s
that benefits accrue to all concerned.
health advocates globally raised concerns about
The birth of modern research ethics began during
of reproductive justice. They highlighted that
QS contextualising this controversy in issues
the Nuremberg Doctors’ Trial in 1946. 23 German
generations of poor, powerless women of colour,
physicians and administrators were found guilty
from developing countries as well as the United
of conducting medical research on prisoners in
States, were targeted for contraceptive delivery,
concentration camps without obtaining their
including forced or coerced sterilization, in order
consent. As a result, most of these prisoners either
to meet political ends, i.e., reducing the fertility
died or were crippled for life. Consequentially,
of “problem populations” (Dasgupta 2005).
the Nuremberg Code was established in 1948
Health advocates argued that the use of QS as a
and became the first international document to
method has occurred within the context of social
state that consent of participants was essential
inequities, and denial of this historical reality
and that the benefits of the research must
further reinforces the invisibility and vulnerability
outweigh the risks (Weindling 2004). Another
of poor women and women of colour globally.
significant milestone in the development of ethics
was the 40 years long Tuskegee Syphilis Study
These and many other experiences shaped the
(1932-72). This was a research project undertaken
biomedical ethics discourse globally.
by the US Public Health Department on 600
low-incomeAfro-American men, 400 of whom
There are four pillars of ethics in health care
were affected by Syphilis. Although free medical
settings -
examination was provided, the men were not told
®
Do no harm or non-maleficence
that they had the disease and the treatment -
■
Maximisegood’ or beneficence
■
Respect autonomy
B
Promote justice
penicillin — even though was available in the 1950s,
was withheld. Many of these men died as a result.
The study was discontinued only in the 1970s after
10
it was exposed to become a source of political
The fifth pillar of community level ethics is still
embarrassment (Gray 1998).
in a nascent stage of development
Community based monitoring of health services
welfare, there was the possibility of conflating
as a concept and in practice, overlaps with the
benevolence emerging from paternalistic
domains of community action, public health,
notions of community development with the
public health research, social science research,
ethical principle of beneficence. Practitioners
and community based research including
of Community Development believe that the
participatory and action research. In this section,
existing social work code of ethics provide little
we discuss frameworks for ethical analysis in
guidance for ethical dilemmas emerging from
some of these disciplines. In the next section, it
social action and activism (Banks 2008; Mendes
is discussed in detail how ethics in CBMP draw
2002). Others attempt to provide guiding
upon ethics in these related disciplines.
principles for community development workers
like those included in the Community Tool Box
3.2 CBMP as Community
Development, Community
Action, Social Action
There is no one definition of Social Action,
Community Action or Community Development.
However, some key elements that characterise
these terms are:
S
®
□
from the University of Kansas (Rabinowitz 2013).
The guidelines build on the four basic principles
of ethics and warn researchers to refrain from
intervening in areas where they lack expertise -
the ethical principle of competence.
The Community Tool Box also discusses
categories of ethical issues that can emerge in
the course of engaging with communities - issues
Organizing and mobilizing of groups
of Confidentiality, Disclosure, Consent (including
of people either living within specific
community consent), Competence, Conflict
geographical boundaries, or having some
of Interest, Grossly Unethical Behavior (having
common features, for example, social
sexual relationships in professional relationships
grouping, special interests, or needs.
in which you hold power, exploiting situations
Movement towards a common goal, solution
for financial gain, defrauding funders, denial
for a common problem, improvement of
of services, discrimination, outright criminal
economic, social, cultural, environmental
behaviour). It states that practitioners need to
conditions or quality of life.
go beyond the issues specified in relation to
Empowerment of those involved - self
community interventions, to conduct themselves
empowerment through individual action,
ethically vis a vis donors, staff members,
mutual empowerment that is interpersonal
participants and community at large.
and social empowerment that is collective
and a result of social action (Pigg 2002).
Each of this provides an interesting framework to
propose a code of ethics for CBMP.
CBMP, as practiced in India, has all the three
elements of Community Action.
In community participation, the idea and
3.3 CBMP as Community Based
Research
practice of Community Development have
Community based health research is
developed over the years to help communities
characterized by its focus on aspects of health
move from dependence to autonomy. The
promotion and prevention, populations rather
ethical issues become sharper when Community
than individuals, a multidisciplinary approach
Development sees as its goal self-determination
and researchers’ partnerships with communities
of communities. In the older understanding
which are often marginalized and powerless-
of Community Development based on
and is aimed at improving the practice of public
11
health (Blumenthal and Yancey 2004). Capacity
to attain but most conducive for ethical and
building of participants and empowerment
effective community based research’ and results
of communities for resource management is
in community empowerment. Buchanan et
considered beneficial for community based
al (2007) and others point out that there are
research (Thomsen 2003).
three distinct purposes of Community Based
Israel et al (1998) suggest eight principles
Participatory Research (CBPR). The first purpose
of community based research. CBMP as
that CBPR fulfils is the ethical function of
community-based research fulfils these
demonstrating respect for community autonomy.
principles. The principles are as follows:
Secondly, it is a research method for eliciting
1.
Recognizes community as a unit of identity.
2.
Builds on strengths and resources within the
community.
3.
Facilitates collaborative partnerships in all
phases of research.
4.
ideas for interventions for improving population
health. Third, CBPR is an intervention itself,
seeking to enhance community capacities. CBPR
is characterized by: Cooperation, engaging
community members and researchers in a joint
process to which both contribute equally, a
Integrates knowledge and action for the
balance between research and activism, both
mutual benefit of all partners.
systems development and local capacity building,
Promotes co-learning and an empowering
and an empowering process through which
process that addresses social inequalities.
participants can increase control over their lives.
6.
Involves a cyclical iterative process.
These characteristics apply to CBMP equally.
7.
Addresses health from both positive
5.
(physical, mental, social well-being) and
ecological (economic, cultural, historical,
political) perspectives.
8.
Buchanan et al (2007) state that ethical
challenges arise when the locus of research
shifts from individuals to communities - how
do researchers demonstrate respect for the
Disseminates findings and knowledge gained
community’s right to self- determination? Who
to all partners.
represents community’? How do we then
CBMP fulfils these criteria and, therefore,
is considered a community based research
operationalise the concept of‘community
consent’?
initiative. Principles of community partnership
The context of CBMP is discussed in subsequent
(Blumenthal and Yancey 2004) - a central idea
sections.
in community based research - apply to CBMP.
12
The partnerships between various stakeholders
Community Advisory Boards (CAB) is a
in CBMP evolve based on continuous feedback,
prominent mechanism for community
as do roles, norms and processes of partnership.
engagement in international research, especially
The facilitating NGO that plays the role of
biomedical research involving minority groups
the researcher in the CBMP process needs to
and vulnerable populations (Cheah et al 2010).
abide by the principles of building partnerships
CABs are composed of members who share
with communities. According to the models of
a common interest, identity, history, illness
community partnership in research by Hatch
experience, language or culture. They are the
(1993) (cited in Blumenthal and Yancey 2004), in
link between the researchers and the wider
CBMP, the community is involved in identifying
community. CABs provide a mechanism to
representatives who play a role as village level
provide the community voice to inform the
advocates as well as in deciding the action on
research design and research process so that it
findings. Therefore, CBMP can be considered a
is respectful and acceptable to the community
partnership with the community that is ‘difficult
(Newman et al 2011). Establishing and sustaining
a CAB is an intensive process, requiring capacity
position to implement the programme. Because
building and ongoing dialogues.
of its nature, CBMP shares some risks inherent
3.4 CBMP as a Public Health
Intervention
is a possibility of‘harm’ to participants - both
community members and health care providers
Public health by definition deals with “all persons
policy and practice. Participants would then
and actions that have the primary purpose of
have been unintentionally misled to expect
protecting and improving the health of the
improvements and their participation in the
to all public health research initiatives. There
- if the initiative fails to translate learning into
public” and is concerned with aspects of health
process, despite other commitments, could be
promotion and prevention with populations
considered a burden.
at its centre (Childress 2002). CBMP, though
considered a strategy or a tool for enhancing
accountability of health services, ultimately aims
at ensuring better access to quality health care
for communities - especially the marginalized,
powerless sections. Therefore, CBMP is
considered as a public health intervention and
is examined against the ethical framework for
public health proposed by
Kass (2001).
The primary purpose of the Public Health
system is protecting and promoting the health
of the public, i.e. the health of populations,
rather than the health of individuals (Childress
2002). Public health interventions are thus often
paternalistic and give importance to public good
over individual welfare and autonomy. In the
next section, we will discuss how the facilitating
organizations in the CBMP context negotiate
these conflicting principles.
CBMP, like other public health programmes
and public health research, has an ethical
responsibility to contribute to addressing
3.5 CBMP as Social Science
Research
inequalities that influence health outcomes. The
facilitating civil society organization plays the
Globally as well as in India, the evolution of a
role of a public health professional and/or public
formal ethical code for social science research is
health researcher while the communities, as well
of recent origin compared to ethics guidelines for
as health care providers/ health administrators,
biomedical research. Guidelines developed by a
are both communities’ towards whom
national committee in 1998 “provide an ethical
interventions are targeted. The CBMP process
framework based on four moral or normative
involves empowering people in the communities
principles and ten principles relevant for ethics in
while engaging health care providers/
research in lndia.”(CEHAT 2000)
administrators to control practices that ‘harm’
people (non- availability of health services,
inadequate monitoring to ensure quality of
health care, denial of health care, and so on), and
promote practices that would ‘benefit’ people
(i)
The Principle of Non-Maleficence:
Research must not Cause Harm to
the Participants in Particular and to
People in General
(responsiveness to people’s needs, respectful
care, appropriate referrals, and so on). Based on
Given the nature of CBMP, it is important to
social learning emerging from the CBMP process,
define participants. In the context of community
health system representatives too have an ethical
based monitoring, ‘participant’ could be defined
responsibility to advocate for programs that
to include all persons directly or indirectly
have positive influence on health outcomes -
involved in the process - the marginalised
irrespective of whether they individually are in a
communities whose rights are denied, as well
as the persons working as a part of a ‘system’ -
CBMP should not result in victim blaming when
government department or any other agency who
systemic lacunae affect service delivery.
can be considered 'duty bearers’. ‘Harm’ caused by
the process of CBMP would be different for these
two groups.
Often in CBMP cases of denial of justice are
used for advocating for improvement in services,
and in such cases, the change does not benefit
Awareness about rights and denial of these rights
the person whose case is used but the larger
is associated with a sense of well-being (which is
community benefits from the inconveniences
associated with empowerment), but when faced
experienced by these persons. For example,
with an event where their rights are violated
subsequent to a case of neonatal death because of
this awareness results in increased angst for
non-availability of health care providers at a PHC,
members of more marginalised communities. In
the village level health committee demanded
the case of CBM, the vulnerable communities’
immediate redressal of issues pertaining to that
increased awareness about denial of rights may
particular PHC and this resulted in improved
result in negative feelings of anger, etc and less
access to care for all villagers (SATHI 2012).
than expected response to actions for claiming
rights can lead to frustration. On the other
hand, for some sensitive representatives of the
system, harm may be more of personal nature -
decreased self-worth, feeling that their work is not
(ii) The Principle of Beneficence:
Research should also make a Positive
Contribution towards the Welfare of
People
appreciated by the community, shame at being
part of a system that is openly being labelled as an
CBMP, as it is designed, is expected to improve
oppressor of the vulnerable sections of the society
access to health services, improve quality,
etc.
empower communities to become active partners
in health planning and monitoring, provide forums
The CBMP process has struggled with the fine
to health care providers for articulating their
line between naming frontline health service
problems and concerns. There is evidence that
providers and demanding answerability from
community based monitoring results in improved
them while their higher ups who are responsible
access to health care services and better health
for monitoring their work, just because they are
outcomes (Kakde and SATHI-CEHAT team 2010).
not visible to the community, go scot free. The
It is important to ensure that access is equitable
result is that often the weakest, most powerless
and the most marginalised benefit from such
person in the hierarchical system is punished
initiatives. This is also the fourth ethical principle
and for faults of the system prevents them from
of justice.
discharging their duties effectively. For example,
one northern state in India is implementing
Interventions that have the potential to increase
what they call ‘reverse tracking of anaemia and
the work satisfaction of health care providers will
malnutrition’ in order to pin down responsibility
fulfil the ethical principle of beneficence. CBMP,
for poor nutrition related statistics on individual
with its creation of structures and processes for
frontline health workers. How fair is it to hold this
multi-stakeholder dialogue, has the potential of
worker (always a woman) responsible if supplies of
adding meaning to health care providers’ work,
Iron-Folic Acid, or Take Home Rations through the
and of increasing ownership of health governance
village Anganwadi centres, are not made available
issues amongst elected representatives.
by the state and district distribution systems?
14
(iii) The Principle of Autonomy: Research
Must Respect and Protect the rights
and Dignity of Participants
are in place before individuals make these
Autonomy and self-determination are important
(iv) The Principle of Justice: The Benefits
and Risks of Research should be Fairly
Distributed among People
concepts within CBMP. In fact, the direct
translation of self-determination in CBMP is
decisions, for there are inherent risks in standing up
in public forums?
decentralised health planning with people’s
participation based on the gaps identified through
It is significant to know how the risks and
the monitoring process. As mentioned in the
benefits of CBMP are distributed among different
earlier sections, within the CBMP framework,
stakeholders. Besides discussing the most
autonomy and self- determination move away
marginalized whose interests are kept central, the
from the domain of the individual to the domain
tensions of risks and benefits as they apply to users
of the collective, the community. In addition, it has
and health care providers are also discussed here.
been important to define ‘community’ to mean the
most marginalised groups in the village. Autonomy
Table 2 Commonalities between CBM and related
has also taken on different meanings within
disciplines summarises the common themes which
the context of Jan Sunwais - how is autonomy
community based monitoring and planning shares
exercised when individuals decide to testify and
with each of the other related disciplines.
depose before the panel? What kinds of processes
Table 2: Commonalities between CBM and Related Disciplines
Community
based
monitoring and
planning
Community devel
opment, Commu
nity action, Social
action
Community based
research
Public health
intervention
Social science
research
Focus on:
Population,
empowerment of
people for common
goal and four basic
ethical principles
Focus on:
Aspects of health
promotion and
prevention,
population,
community as
partner
Focus on
population and
aspects of health
promotion and
prevention
Has four overriding
principles of ethics
which Are:
Aims at protecting
and improving the
the health of the
public possibly
through changing
policy/practice
Contribution
towards welfare
of participants.
It is a cyclical
process which
aims to empower
community
Combines research
and intervention
based around the
four basic ethical
principles
Addresses health
inequalities in the
community and
empowers people
to take actions
for improvement
in their health
situation
Do no harm.
Respect and
protect rights
and dignity of
participants.
Benefits and
risks fairly
distributed
among
participants.
15
4-1 Relationships in CBMP
The section 4.1 Relationships in CBMP, explores
various sets of relationships between the
CBMP is a tripartite partnership between the civil
stakeholders mentioned earlier in terms of
society, representatives of the health system and
the nature and dynamics of power in those
the elected representatives or PRI members. The
relationships. Power imbalances result in
partnership operates at various levels as described
vulnerabilities and potential for abuse of power.
earlier.
Ethical issues are located within the hierarchies of
Various stakeholders are involved in the CBMP
dimension.
power and each relationship thus has an ethical
process - the State Nodal NGO, facilitating
organizations at the District and Block levels, other
4.2 People and the System:
Ethical Issues
intermediary NGOs, local community groups and
CBOs, local animators and activists, communities
(especially the vulnerable or marginalised groups),
institutional entities mandated by the state
Ethical issues around agenda setting
(For example, the Village Health, Nutrition and
Sanitation Committees), elected representatives
at different levels, health care providers and
health administrators at different levels and
administrators from other departments related
to determinants of health (like Water and
Sanitation, Women and Child Development,
Tribal Development and so on). The State Health
Department is a key stakeholder because it has
mandated the CBMP and provides the financial
resources. The relationships between these various
stakeholders are complex.
As mentioned earlier, CBMP’s central purpose is to
bring about a change in the relationship between
the relatively powerless users of the health system
(or ‘beneficiaries’) - especially from marginalised
groups - and the more ‘powerful’ health care
providers and health administrators. What are
some of the ethical issues faced by facilitating
organisations at this level? One concern that
comes to mind is the need to balance the ethical
principle of autonomy with the struggle for
social justice that facilitating organisations are
engaged in.
In addition, it is important to recognise that just
like the community, the health system too, is
not a homogenous entity. The peripheral health
workers are the lowest in the hierarchy and the
most oppressed and take all the blame. In fact,
the Auxiliary Nurse Midwife (ANM) faces an
additional set of risks arising from a number of
gender-related issues. Similarly, within each NGO,
there is a hierarchy - thus, the director of the NGO
who agrees to implement such a program has
huge power over his employees who actually run
the program and who are the face visible to the
community. These frontline NGO staff generally
have a different understanding of the ground
reality — but they may be required to “show
results” to the boss and may have to take different
kinds of risks.
Leaders of two Nodal organisations, one from
a Block level organisation and another from a
District Coordinating organisation - both from
Maharashtra, stated,3 that one of the challenges
they faced was that culturally the adivasis (the
indigenous tribal groups) with whom they worked
were very peaceful people who accepted their
situation and did not question it much. Left to
themselves, they would perhaps not really want
to undertake an exercise like monitoring health
services. The representative from the District
Coordinating organisation went on to wonder
aloud whether it was then entirely ethical to take
them through this effort. What is the meaning of
autonomy and consent in this situation? In one
sense refusal of the communities to necessarily
3
There conversations were part of on going review
process of CBMP in Maharashtra that the author was
engaged in.
18
“fit in” with the ideas of the NGOs facilitating
a larger and longer struggle for equity and social
development needs to be considered as an act of
justice that the facilitating organisation has been
agency, that they are active and not passive. This
organising the Adivasis for a struggle that actually
is critical when discussing ethics and especially
aspires for a higher level of autonomy and self-
envisaging the role of NGOs.
determination. The preparatory process in the
CBMP initiative includes positioning community
A short term and a limited perspective perhaps
monitoring within the larger struggle for rights,
leads one to question whether the community
building a community consensus on the agenda
consent to be part of the CBMP process is
and defining the roles that the various stakeholders
actually a result of an autonomous decision.
play-
The justification perhaps lies in the fact that the
community-monitoring project is just one piece in
Box: 4 Reflections of Tamil Nadu Team on Community Monitoring Exercise
What we are uncomfortable with, is the fact that as persons from the NGO persons involved
in Community Monitoring exercise, we are external agents. We raise questions regarding
health access and entitlements - not necessarily being able to engage with caste issues
or the history of other struggles in the community. In the process, we end up stirring the
pot of inequality and inequity in the community which is related to larger socio-economic
issues. While we may have the luxury of going back to our comfortable urban middle-class
security, many of those who actually take part in the process as paid staffer volunteers at the
village level and who have to face the brunt of any backlash, do not have the luxury we do.
For example, while we make a point about having meetings in Dalit hamlets, the Panchayat
President - a non-Dalit - refuses to come if the meetings held here. We need to think if
openly confronting such caste hierarchies are the only way of overcoming the situation.
We feel it is important to explore various solutions based on the realities of that particular
community and not be stuck to one formula based on our beliefs.
Community Monitoring necessarily stirs issues in the community, but unless we NGO
facilitators are willing to put our roots in the rural area for a long-term struggle with those
who are at the bottom of the social ladder or even actively link the community with social
movements for the same, merely raising issues and providing ‘standardised’ solutions without
acknowledging the local histories and struggles are counterproductive. Our stance has been
to not force communities into pre-determined solutions but to encourage them to explore
various solutions based on their local contexts.
Thus, while in some Panchayats, communities, NGOs choose open confrontation. In others,
NGOs choose to have meetings alternately in Dalit and non-Dalit areas, and in some, they
accept that the Panchayat President will not attend and go ahead with the meeting.
....Thus, the stand is one of encouraging groups to engage with the inequities and corruption
and evolve solutions and understanding based on action rather than pre-determined paths.
The role of the State NGO is to support these individual struggles and engagements.
Excerpts of Conversation with the State Team
19
Ethical Issues around ‘Who is the
Community?’
Box: 5 Reflections of Tamil Nadu State Team
on Community Monitoring Exercise
Who is the ‘community’ in CBMP? Representatives
of the (i) marginalised groups according to the
context - the Dalits, tribal, special interest groups,
One of the key issue is that community
monitoring and action is seen more as a
backup for failed governance of the health
women, (ii) community based organisations like
system rather than as an essential component
women’s self-help groups, youth organisations, (iii)
of any system. Thus, communities end up
elected representatives, and (iv) other local leaders
like the village school teacher, the health worker
form the community’ for CBMP work. The principle
that facilitating organisations should follow is one
of inclusivity - include all those who will represent
the interests of the marginalised and the vulnerable
- thereby operationalising the ethical principle of
doing the jobs that the system is supposed
to do, for example, monitoring entitlements
like the jSY. Thus, community monitoring,
as it plays out, ends up as an inherently
manipulative process - with the communities
being stifled by the process, forced to think
and work within a pre-set biomedical model.
justice. Facilitating organisations need to constantly
check whether the elite in the community are
Excerpts of Conversation with the State Team
capturing the processes.
Ethical issues can also arise in relation to questions
like ‘who monitors health services: Individuals
or collectives? Individuals undertaking health
monitoring are vulnerable with respect to health
care providers who have their professional status
and the power of the system to back them. In
the health sector where the power asymmetries
and vulnerabilities are more than in other public
services, there is a risk of harassment, denial of
services and other forms of backlash, if individuals
are seen to be the monitors. In order to do no
harm, the role of the facilitating organisations in
many states has been to build the power of the
collective - even if individuals are seen to conduct
community monitoring, there is public knowledge
that they have the collective to back them. In
instances of backlash by the system, the facilitating
organisation consolidates the collective strength
to (i) report the backlash to higher levels, (ii) make
the issue of backlash known to wider circle of
community actors like the elected representatives
who can help in responding to such backlash,
and (iii) demand that redressal measures be
institutionalised. In fact, we believe that to have a
Community Monitoring process without a formal
system for redress is in itself unethical. This issue is
repeatedly taken up with State Health Departments
and the Ministry of Health at the national level.
20
Ethical Issues around Backlash
There are instances of misinterpretation of
people’s expressions resulting in a backlash against
facilitating organisations. A case of the death of a
person after laparoscopic tubal ligation procedure
in Pune district and subsequent response from the
health care providers and the health system are an
example of this.
Box 6: Backlash against NGO’s Facilitating
Advocacy and Related Ethical Issues
On June 26, 2Oii,Ratanbai approached Varvand
PHC in Pune district for Tubal Ligation
(TL) two months after the birth of her first
child after being convinced by the ANM.
The doctor initiated the procedure but did
not complete TL since complications were
noticed as a result of a past surgery that
Ratanbai had had. She was advised to stay
in the hospital for two days. Worrying about
the loss of wages Ratanbai chose to go home.
Two days later, she complained of pain in the
abdomen, the ANM visited her village, gave
her some medications and advised her to seek
care at the PHC. Ratanbai went to the PHC
two days later. The Medical Officer referred
her to the tertiary hospital in Pune
Ethical Issues around Jan Sunwais
where two days later she died of septicaemia.
Ratanbai’s sister Balubai presented her case
The Ethical Principle of Beneficence:
in the Jansunwai in March 2012. She had been
following up with the health department for
One significant lesson learnt by CBMP facilitating
collecting the promised compensation of
organisations across India is that Jan Sunwais,
Rs 50,000/- without any luck even after ten
although a very powerful strategy is to increase
months. Frustrated with the situation she
accountability of the health system, need to convert
lost her temper and said "I will burn alive the
into Jan Samvaads or Public Dialogues. In the initial
nurse who encouraged my sister to go for the
stages, Public Hearings achieved their purpose of
procedure”. This led to a sharp reaction from
demonstrating to the complacent and lethargic
the district health workers’ union threatening
public health system that people monitoring health
an agitation in response to disrespectful
services, meant business. The Jan Sunwais brought
behaviour towards health workers. The
out hundreds, if not thousands, of ordinary people,
District Health Officer sent a letter to the
demanding action on individual and systemic
NGO that had organised the jansunwai
problems like poor referral systems, non-availability
where this incident took place asking for
of medicines, negligence, dereliction of duty by
‘explanations’.
health care providers, and so on. Such was the
power of the people that health care providers
(Davandi SATHI, April - June 2012, pp 16 - 17.)
and health administrators reported ‘fearing’ these
events. For the first time in all their years of service,
someone was actually asking them for an account!
In addition, to the show of power by the District
Health Officer and the repercussions for the
facilitating NGO, the story of Ratanbai highlights
many other issues related to hierarchies and power
They were not used to this! They experienced
Jan Sunwais as confrontational and humiliating
experiences aimed at targeting individual health
care providers.
of different health care providers within the system.
Box 7: Reflections of the Tamil Nadu Team from Jan Sunwai
Experiences
Box 8: Jan Sunwais and
Answerability
Frontline workers are under tremendous departmental pressure
A woman who approached
to fulfil targets for female sterilisations - the ANM’s action of
PHC for delivery was
convincing Ratanbai for a TL after the birth of the first child is
referred to a private facility
a result of this pressure. The questions that arise are: what is
by the ANM. When this issue
the ethics of holding the frontline health workers (for example
was raised in jansunwai,
ANMs- who are pressurized to fulfill targets) accountable and
the ANM accepted her
humiliating them as they are in lowest rung of hierarchy and
wrongdoing. It was decided
least power and have lesser say in an extremely hierarchical
that ANM would repay the
health system? Should civil society organisations think of ethics
costs the family incurred as a
only with respect to the violations of the community or do they
result of this referral.
need to think of the ethics in relation to with those with very
less power within the health system also? We need to take into
consideration that those within the system also have rights -
while we cannot expect the community to agonize over these
(though they do most of the ti. .1 • in my experience) I think the
NGO certainly needs to.
pH " \
Excerpt from review
of CBMP, Osmanabad,
There is an ethical issue, as in Box 6, suppose
The testimonies (see Box 10), show that areas
the facilitating NGO wants to tone down the
of concerns are resolved at these hearings. The
sharpness of dialogue (in favour of broader
unresolved issues were referred to the next
beneficence), but specific aggrieved people want to
level Monitoring and Planning Committee. The
take an assertive stand against denial suffered by
collective learning of civil society organisations
them, and demand immediate or definitive action
is that once major outstanding issues are
(exercising their autonomy) - how would these be
addressed and public dissatisfaction reduces, sharp
reconciled?
confrontation is no longer required and might even
Another dimension is that the representatives of
of the Jan Sunwais probably needs to change to
the health systems find Jan Sunwais uncomfortable.
facilitate greater problem solving and constructive
They are trained to recognize accountability only
dialogue between the health system and the users.
as upward (to their superiors) and internal (within
Jan Samvaads or Public Dialogues now are a forum
the department). It becomes difficult for them to
where in addition to community members and
be counter-productive. In this situation, the tone
accept that common people outside of the health
users, health care providers bring their problems,
system can legitimately ask questions and expect
which are resolved with the collective wisdom
an answer for their grievance. Thus, it is extremely
thereby actualising the principles of maximising
important that they are oriented to the modalities
good. To diverse stakeholders, it is the principle
and requirements of community monitoring before
of justice.
the process is launched in any area. This is both
ethical and strategic.
Box 9: Reflections of the Tamil Nadu Team on Jan Sunwais
We are clear that as part of community monitoring we do not want to target the ANMs or the last
person in the link. In fact, the community pointed out that it is the ANM (Village Nurse) who works
and delivers in the field setting. We decided not to let the monitoring process become a trial and
disciplining process. Rather than focusing on apportioning individual blame, we believe that the Jan
Sunwai space must be used to evolve collective solutions. Thus, we see the Jan Sunwai as a Panchayat
Health Planning Day (as discussed with the health system too). The main aim is “How to change the
“red colour services” (poor performance) into “green” (good performance) “together” in “6 months”,
rather than forcing the system to respond to a “testimony”.”
The doctors have told us that they are extremely uncomfortable with the hostile ‘auditing’ process of
Jan Sunwais where they do not know what to expect, which cases will be taken up for examination
and for situations that were beyond their control given that they are the lowest in the decision
making hierarchy. We thus decided to inform doctors in advance through the animators the issues
that would be taken up in meetings, such that to give the doctors the time to come up with
responses and point out what is within their control and suggest workarounds and whom to approach
for things outside their purview. Wherever punishments or reprimand need to be affected, we feel
that due process of the system’s established procedures should be followed.
Conversation with the State Team
22
Box 10: Decisions and Action taken on Issues Raised in Jan Sunwai - Bhor Block level Jan Sunwai
■
Medical Officer of the Primary Health Centre should stay on the PHC premises.
■
Services such as delivery, contraception are free of cost at government health services. People
were asked to file complaints if they were forced to pay for services.
An Order was issued that no individual was to be charged a fee for any surgery or medical
□
procedure conducted at the PHC.Officers ordered an enquiry into levying a fee on persons
seeking services at the PHC.
The District Health Officer ordered that all donation collection boxes be removed from all PHCs.
Action taken on issues raised at Jan Sunwai at Saswad Rural Hospital
■
Taking the complaints against the Medical Officer who refused to conduct caesarean sections at
the PHC and instead self-referred the patients to his private clinic was transferred
■
New Medical Officer appointed, trained and now conducts caesarian sections
Review of CBM P, Excerpts from Maharashtra
What one can see (Box 11) is the conflict between
Yet another clash between privacy rights of
the principles of‘do no harm’ to individual
individuals as promoted by bioethics, and the need
health care providers and their confidentiality,
for public health related information to benefit
and the need to bring home the learning’s about
populations (public health ethics) as pointed out
professional ethics and their accountability to
by Bayer and Fairchild (2004), relates to individual
the public, through ways that appear to work,
testimonies in Jan Sunwais to highlight collective
namely, public shaming. Disgracing the person
systemic issues. Individuals can be at risk of
in public in our opinion should be the last resort.
punitive action by health system representatives.
There is a danger that the visible frontline health
Informed consent after understanding the risks by
care providers, often the weakest and the most
these individuals assumes great importance. The
vulnerable, are victimised while their superiors who
facilitating organisations thus have the duty to
are supposed to monitor them, continue to abdicate
establish that Jan Sunwai should only be done after
their responsibilities and are not held accountable.
the requisite amount and quality of preparation
(SATHI 2013). It is important that the strength
Box 11: Maximise Good
In Shahada, the ANM’s work was evaluated
Box 12: Class Issues
using the tool and discussed with people
Another aspect of this kind of hybrid
from the community. The issues were
accountability mechanisms is that they pit the
presented at a Jan Sunwai. The woman
weakest against each other - both vulnerable
Sarpanch(head of the elected people’s body)
communities and the lowest in the rung
of the village discussed the issues with the
of health care provision - while there are
ANM. She understood the problems of the
solidarities of class between the leaders of civil
ANM, provided support to her and work
society organisations and the higher levels of
performance improved.
health providers and managers.
Review of CBMP, Nandurbar, Maharashtra
Conversation with Abhijit Das
23
of collective numbers be visible during the Jan
The bottom line that could aid decision making
Sunwai, that adequate homework is done in terms
about individual testimonies for collective good
of accurate and detailed documentation of the
within Jan Sunwais is that the individual should
complaints and that a factual and problem solving
get quick justice and reparation.
stance be adopted rather than a blaming one.
It is fair that the health system representatives
are informed in advance about the issues that
will be taken up in the Jan Sunwai and have an
opportunity to come prepared to face questions.
4.3 Ethical Issues in
Relationships among Civil
Society Organisations and
Communities
The Public Health goals of social justice and
greater public good - albeit through individual risk
taking - is reflected in the excerpts from SAT Hl’s
case study.
Recognising Power Differentials
There is diversity amongst civil society
organisations engaged in CBMP in India
Box 13: Individual Risk and Greater Public
Good
in people’s struggles for survival, voluntary
organisations, community health NGOs engaged
The Jan Sunwai not only generates
in service delivery, integrated rural development
egalitarian aspirations among the
organisations, trade unions, and professional
marginalized, but it also enhances the
organisations and so on. The two main criteria
confidence of the oppressed (in this case
for their inclusion is work in the health sector
people denied health care). It makes the
or engagement with rights’ issues (although
person denied of health care occupy the
a combination of the two criteria is desirable,
publicspace, not for achieving personal
such CSOs are not always available in every
gain but to achieve an egalitarian impact
setting, and organisations that fulfil one of
for all citizens (emphasis ours). Thus, the Jan
the two criteria have to suffice). Civil society
Sunwai entails enhancement of democracy
organisations also work at various levels ranging
with moral dimensions. This is an event
from the Village, Block, District, State, National
that reverses the usual formal hierarchical
and International. Some of them work across
relationship, since the marginalized and
multiple levels. The nature of their work may vary
the poor no longer continue to be assumed
from direct community engagement and action,
as guilty, while those in the power like
to research, training, advocacy. They may have
doctors, bureaucrats and other health
different ideologies. Each of these differences
officials, are required to respond, are held
contributes to the status that different
to be answerable and on occasions are
organisations have and the power base that they
reprimanded by their own senior officials.
Jan Sunwai thereby triggers the democratic
resurgence of the marginalized and the poor
through expansion of spaces for democratic
engagement.
Case Study of Community Based
Monitoring and Planning, Maharashtra
India COPASAH 2013
24
ranging from those with mass base engaged
operate from in different contexts.
Box 14: Organisations, their Power Base and
Ethical Issues
Concern about ethics is a direct outcome of
This is linked with a larger question - to who are
the CSOs accountable? Their legal accountability
may be to their respective Governing Boards but
the obligationto protect the less powerful
the issues of moral accountability need to be
from abuses of power by the more powerful.
articulated. In the Maharashtra CBMP process,
Hence, it may be postulated that ethical
based on discussions over the last few years, it is
issues generally become more significant
proposed that each CSO involved in community
as the degree of separation of the civil
monitoring and planning is accountable in three
society organisation from the community
dimensions:
increases, and the power relations between
organisation and community become more
a
To the communities with whom they work,
to ensure their maximumempowerment,
unequal. So ethical issues emerging in
sustainable change in power relations and
context of a village women’s self-help group
or local youth group vis-a-vis their own
improved access to services with minimum of
community are generally likely to be less
adverse impacts.
complex, compared to say the ethical issues
that arise in case of a large, distant and well-
b
To NRHM, the public authority providing
funds and which is expected to demand basic
funded NGO and the same community.
accountability regarding usage of funds and
implementation of activities.
Abhay Shukla - Maharashtra Community
Based Monitoring and Planning
c
To the collective of implementing Civil
Society Organisations which has taken upthis
Accountability and Ethical Issues
entire activity as a group, and which needs to
maintain certain standards of probity to ensure
Another way of looking at the accountability
that the entire activity of CBMP achieves
and ethical issues, is that if the CSO is locally
certain credibility in society, which is essential
rooted and is accountable to the community in
for further development of this process
an organic manner (for example, a local mass
organisation which is not externally funded, and
Ethical Issues in Partnerships
relies entirely on its mass membership for work
and survival) then gross abuses of power become
Literature on Community Based Participatory
less likely (though not impossible), since people
Research (Cargo and Mercer 2008) discusses
would respond to these and would either force the
power issues between researchers/academics
organisation to correct itself or would withdraw
and community based organisations. With all the
from it. On the other hand, external organisations
dimensions of diversity, the challenge for the State
which do not have any on-going relationship with
Nodal Organisation is how to build and nurture a
the community, and which have no 'dependence'
partnership based on principles of mutual respect
on the community (For example, an external
such that each organisation can contribute its
research organisation which just comes in, gathers
strength and area of expertise. Values of equality,
data and leaves) are more prone to (deliberate
fairness, participation, transparency are critical to
or inadvertent) abuse of power since there is no
foster such partnerships. The challenge arises when
‘natural’ accountability mechanism in place. In
different partners understand and operationalise
the latter kind of situation, ethical safeguards and
the terms of the partnership differently. Channels
guidelines become much more important.
for dialogue need to be kept open. Conflict
resolution methods have to be transparent and fair.
What happens when one partner’s conduct can
their representatives. These processes are similar
jeopardise the goals of the entire partnership?
to participatory action research and require
For example, if one organisation does not render
considerable capacity building and engagement
correct and timely financial accounts of the funds
with the community. The support has to continue
received from the health department, this can
through the phases of presentation of the data
delay the receipt of funds for all the partners. The
in dialogues with the health system and other
State Nodal Organisation then has to exercise its
stakeholders. Risks and benefits of each strategy
authority to ensure that no harm is done to the
have to be discussed threadbare so that informed
larger goal. Others in the partnership may be called
community consent is elicited.
upon to play different roles to salvage the situation
- if it is a matter of capacity, some organisations
The facilitating organisation has the moral
in the partnership may intervene to provide the
responsibility to maintain balance between
requisite financial management support. If it is
community good and individual welfare as well
a matter of misuse of funds, then organisations
as ensuring that all types of participants are
will have to get together to take other kinds of
protected from harm in the course of the process.
corrective action. The ethical principles of do no
Documented examples show that when NGOs
harm, maximise good and promote justice will
play a role of liaison between the people and the
be used to guide specific actions to manage the
system, and when the platforms created through
partnership.
the CBMP are used for bringing forth issues
With respect to how facilitating organisations -
workers, there is a high possibility that CBMP
‘researchers’ in the Community Based Participatory
receives acceptance from most stakeholders and
Research parlance - interact with partners who are
implementation is most effective.
faced by both people and grassroots level health
community based organisations, operationalising
ethical principles within the community monitoring
process will mean:
■
Building a consensus on what will be
Stakeholders
monitored and how will it be monitored- what
Initially the Medical Officer of the PHC
are the most important issues that the local
resented CBMP, as he did not like doctors
communities think should be monitored.
■
Box 15: Promoting Satisfaction of All
Ensuring representation of the interests of the
most marginalised groups in the community,
even if their physical representation in decision
making fora may be difficult - for example, due
to migration.
being questioned in Jan Sunwais. This
reflected in his attitude towards the
facilitating NGO. Over the course of
years when he noticed that in addition to
questioning health care providers about
their practices, the NGO helped the health
workers to reach the people and helped
■
To the extent possible, ensuring data collection
in ways that community representatives can
handle it.
■
-
relations between people and the PHC
Involving community representatives in the
staff, his resentment disappeared. The MO’s
analysis of the data.
initiatives have played a key role in improved
Ensuring social validation before the data is
access to services provided through sub
presented anywhere.
centres and PHC.
All of the above are ways to move the control of
SATHI (2012) Paule Chalati Badalanchi Vaat;
the process out of the hands of the facilitating
PP 38-39
organisations to the actual communities and
26
present challenges experienced by health
care providers to the people thus improving
Other Dilemmas
NGO activists have pointed to the fine line
4.4 Ethical Issues in the State Civil Society Relationships
between the facilitating role of the civil society
There are a whole host of issues stemming from
organisations and paternalism. For example, the
the relationship between the State and Civil
Tamil Nadu team asks, ‘Who mandates the civil
Society Organisations and different responsibilities
society organisations to play this ‘facilitating role’?
of these different stakeholders.
From where do NGOs get the right to ’empower’
the community? By taking on so much of
As stated by Childress (2002) and others, the
“responsibility” for facilitating this process in “the
government has a unique role in public health ‘to
best possible" way, are we in NGOs appropriating
protect public’s health and welfare because it alone
more than our fair share?’
can undertake certain interventions....and because
public health programmes are public goods that
Do efforts to promote women’s empowerment
cannot be optimally provided if left to individuals
actually result in greater gender inequity?
and small groups’. CBMP should thus be seen as
apublic health intervention. The positive aspect is
that the Health Department at the federal level, as
Box 16: Reflections of the Tamil Nadu team
on Community Monitoring Exercise
experience
well as Health Departments in several states have
‘owned’ Community Monitoring and Planning there is a statement of purpose about CBMP in the
On a number of occasions, we noted that
official NRHM documents and there are budgetary
in the project there is a majority of women
allocations to support the process in various states
as facilitators (individuals working directly
in partnership with civil society organisations.
with the community have the lowest
While the official mandate is a desirable
salaries) than Men who are seen a majority
prerequisite to CBMP being implemented, there
in higher roles with better pay. Women
are certain contradictions emerging.
are forthcoming as volunteers for some
of the unglamorous and mostly unpaid
Firstly, there are tensions because while the
tasks. They may be paid Rs. 3000 per
health system wants greater accountability from
month (USD 60) for this work. They still
those lower in the hierarchy, how prepared is
need to get back to their homes by 4 pm
it to demonstrate accountability at the highest
to cook and manage the domestic chores.
levels? In addition, how prepared are civil society
Many of our planning meetings are in the
organizations to hold the highest levels of the
night; they are under pressure to attend
health system accountable? The experience of
these meetings. They also have to put up
many states on Community Monitoring, points
with the taunts of the men at home for
to the fact that while structures and processes
unnecessarily disturbing the harmony at
up to the District level are yielding results, in
home. It all looks nice and we think that
terms of increased accountability, the weakest
now there is gender balance and gender
link in the chain is the state level processes.
equity. However, have we in fact added
Systemic problems that need highest level of
to the inequity, in a sense it is a double
policy interventions - drug supplies, specialist staff
burden for women?
appointments, transfers and postings policies, and
Conversation with the state team
so on - are not adequately resolved (COPASAH
2013). Important principles that guide work for
27
community development (Rabinowitz 2013) -
to abuse its power as a funder to derail the
build on collective learning and strive to improve
CBMP process if becomes too uncomfortable.
the situation, to the extent possible - stand
There are several ways in which this derailment
violated. While the Block and District Monitoring
can happen - excluding some of the more rights
and Planning Committees meet regularly and
based civil society organizations and individuals
on schedule, State Monitoring and Planning
who will speak truth to power, delaying release of
Committees’ meetings have not been formed in
funds and thereby stalling processes in the field
most states, and where formed these are irregular
where community representatives have voluntarily
and do not function in a manner that would
contributed their precious time and labour. In fact,
resolve major systemic issues. It would seem that
right from the pilot phase of CBMP in India (zooy
the State Health Departments are using the CBMP
og), there have been delays in release of sanctioned
process to shoot off the shoulders of community
installments, sometimes cuts in the budgets
groups - relying on monitoring by communities
(NRHM 2010). While it can be said that delays
- while not proactively strengthening their own
in funds release and budgetary cuts (even after
internal monitoring systems. This appears as an
budgets are sanctioned) are not unique to CBMP
instrumentalist use of community monitoring and
and an occupational hazard of undertaking any
not a commitment to the essence of the initiative
government funded programme, failure to ‘keep
and therefore an ethical concern.
promises and commitments’ is a contravention of
‘general moral considerations’ underlying public
Box 17: Response from the Maharashtra team
health ethics (Childress 2002).
Our experience in Maharashtra is that often
higher officials do use CBM as a channel to
pull up their subordinates; hence external
Box 18: Reflections on the Tamil Nadu
experience
accountability processes trigger internal
We knew that the Government might not
accountability mechanisms to some extent.
deliver on Community Monitoring all the
However, these internal mechanisms should
way. We were also (and are) sanguine of the
start functioning effectively on their own
fact that the hard won gains at the grass
instead of requiring such repeated ‘triggers’.
root level will fall like a pack of cards once
government funding is stopped. Which is
AbhayShukla - Maharashtra Community
Based Monitoring and Planning
the case now - as there has been no funding
since July 2012.Not only will this gap in
funding affect the human resources of the
The second contradiction is with respect to
implementing NGO, but equally importantly
the power that the State wields because of its
will impact the morale and the energy
position as a donor supporting the process of
created through the process and negatively
organization of the Monitoring Committees and
affect the credibility of the NGO staff among
their capacity building at each level. Autonomy
the community who do not see a continuity
of the participating Civil Society Organisations
in the efforts. We may have the luxury as
are likely to be severely compromised because
NGO activists (at the state level) of walking
they are receiving funds from the very entity that
away from the situation if funding stops and
they are supposed to monitor! There is a potential
“moving on" to other agenda. But is it fair on
risk of the civil society organizations that are
the people with whom and in whose name
dependent on the government funding of doing a
we have worked?
cosmetic and superficial job while engaging with
the community monitoring exercise. In addition,
there is potential for the State Health Departments
28
Conversation with the State Team
Ethical Issues around relations with the
government health system
partnerships such as the CBMP. Any true
partnership is characterized by transparency, trust
and democratic and participatory decision making
Facilitating civil society organisations often face
in a spirit of equality (Cargo and Mercer 2008).
situations where strategies for empowering
How then does the Health Department become a
communities and highlighting injustice jeopardise
‘more than equal’ partner failing to respect norms
relations between the NGO and the government
of participatory and democratic decision-making,
health system. For example, in Maharashtra,
when it decides whom to exclude and include in
“implementing agencies were forced to rethink
the process? What amount of funds are allocated,
the strategy of approaching media” after the State
when to release the funds and of what quantum? Is
health authorities contested the findings and
this again not an abuse of power?
expressed displeasure about choice of strategy
(Kakde and SATHI-CEHAT team 2010). A crucial
People’s participation in health planning is also a
question that arises here is the direction of
stated objective of the CBMP process. The idea is
accountability of the civil society organisations -
that through the monitoring, community groups
who are they accountable to? How do they decide
identify needs that are prioritized and incorporated
when to follow the lead of the community and
in the village health plan. Village health plans are
when to go against the community wishes for the
then to be aggregated into Block Health Plans and
greater common good?
further into District Health Plans. There is also
provision of‘untied funds’ at the village, sub centre,
It is significant to discuss the point about
primary health centre and higher level of health
‘ownership’ of the CBMP programme by the Health
facilities, such that decentralized and local planning
Departments in the context of multi stakeholder
can be done with community participation. While
Box 19: Reflections of the Tamil Nadu Team on Community Monitoring Exercise
There are many things we can and cannot do in a government-funded people’s participatory
program. Given a commitment to partnership with the government and the community, we need to
be sensitive to the requirements of both. While there is a primary commitment to the marginalized
groups, we feel it is important to be sensitive to the efforts of the various individuals within the public
health system who have opened up spaces for the people to enter in. Too much confrontational
radical interrogation will rapidly close spaces (hard earned) within the public health system. This
concern however needs to be balanced with the need to raise issues at various levels that emerge
from the process. Thus, a number of methods need to be evolved to balance these two pressures; this
can be very confusing and calls for a lot of reflection and introspection. Call it pragmatism, cynical
calculation or what you will. We want to stay on as much as ethically and constructively possible to
help further the CM process - if need be by losing the short-term battles to win the long term war.
We want to create “alternative modes of change.”
We therefore take care not to do certain things: for instance, interact with the media in a direct
way. It upsets the few motivated people in the government. In fact, we have a tacit understanding
that we will not approach the media under the CM/NRHM label (but do so for the same issues
under the JSA label for example). It sometimes seems a conflict of interest of sorts. You cannot be
a party to a triage and take the issues to the media when it suits you.
Conversation with the State Team
29
all this is on paper, fact planning continues to be
not been made to enable community groups to
controlled by higher levels of the health system.
contribute meaningfully and in informed ways into
The formats have not changed. Investments have
the planning process.
Box 20: Tamil Nadu Team’s Perceptions on the Community Monitoring Exercise
While expecting the communities to monitor, plan and undertake action for health system
strengthening, the government has not shown the necessary commitment to the process in
terms of allotting funds for the plans nor taking these plans seriously in the district or state
planning process. Neither has the government shown a commitment to the overall process
in terms of facilitating the participation of the staff, orienting the staff etc. Some of the ideas
that arise from the plans could be for renovating a PHC, or filling up vacant posts. Or for anti
snake venom injections. While the government is ready to sometimes invest in equipment or
infrastructure, it is unwilling to directly enforce timings for doctors who do not stay beyond ipm
in most PHCs. You have raised people’s hopes for meaningful change but you don’t have funds
for implementing suggested changes, nor the systemic commitment. Indeed, we sometimes feel
it is unethical to be party to raise people’s hopes without being able to fulfill them.
Conversation with the State Team
In the preceding section, we have perhaps raised more questions than suggested solutions!
30
The purpose of this paper was to identify some
■
It is important to build and demonstrate
of the ethical issues as they emerged within the
collective strength of communities so that
context of CBMP in India in the hope that this can
threats to individuals are mitigated.
be a basis of discussion amongst the Community of
■
Practitioners. Although these issues emerge from
In specific situations there may be a
conflict between various ethical principles
the specific context of India’s CBMP work, many
- for example, between individual or group
issues are generic — accountability of civil society
autonomy and beneficence or maximize
organizations, partnerships with communities,
good; between ‘do no harm’ to individuals
state-civil society-community relationships. In
and privacy needs of individuals and ‘promote
addition, ethical principles are universal.
collective good’. It is important that these
conflicts be articulated so that guidelines can
Ethical concerns in CBMP are located in various
sets of power relations that characterize CBMP:
users and communities vis-a-vis the health system,
be formulated.
■
dilemmas when civil society organizations
facilitating civil society organizations vis-a-vis local
partner with the government health
communities and community actors, the coalition
department specifically for people’s health
of civil society organizations and the health
rights. These have to be articulated even if
system. Terms like autonomy’, ‘self- determination’,
within the situation not much can be done
beneficence, non-malfeasance, justice,
about them.
transparency and disclosure acquire different
meanings in the context of relationships between
different stakeholders.
The discussions in various sections highlighted the
following:
■
‘Autonomy’ and ‘Consent’ acquire specific
nuances when we work with communities as
opposed to individuals. These nuances need to
be captured.
■
There are a host of contradictions and
Community monitoring is an activity that requires
different kinds of preparation as compared to
Community Development. It is an emerging field
which is different from Public Health, Community
Based Participatory Research, Social Science
Research, (although it draws upon them). Hence,
guiding principles and code of ethics need to be
developed by practitioners. It must be recognized
that while these guidelines and code of ethics
There is a need to reflect upon the mandate
are useful to guide practice, resolution of specific
and role of facilitating organizations vis-a-vis
dilemmas may not always be possible.
communities. What are the boundaries that
must not be crossed, what are the processes
What can these guiding principles be? We can start
that need to be followed so that facilitating
by suggesting that the Community of Practitioners
organizations not lapse into paternalism and
need to:
erode self-determination of communities?
Facilitating organisations need to become
At a personal level and within teams
aware that historically engrained power
■
discussion of dilemmas
differentials can lead to manipulation. It may
sometimes mean that whilst an organization
■
may have shared values with the community,
Reflect on how power operates in various
situations and relationships. Recognise
they should not thrust solutions to problems
the dynamic nature of power, and the
upon them. Rather through encouragement,
vulnerabilities within different relationships
communities can engage with problems and
together NGOs and communities can reflect
upon action and outcome.
3?
Promote a culture of reflexivity and open
■
Recognise discomfort when values are upset/
disturbed
With communities
■
□
To conclude, our practice of community monitoring
Promote community autonomy and self-
should result in enhancement of distributive
determination
justice. The most vulnerable should find their voice
Strive to empower the weakest and the most
powerless
and become active agents. Health systems should
become responsive to people’s needs. There are no
perfect solutions, even with the dilemmas we have
H
Build competence and opportunities for co
learning
□
Promote collectivisation.
Within partnerships
■
H
□
to act. How we act to maximise beneficence and
minimise harm, within these complex situations,
is the lived experience of ethical action. The
Community of Practitioners needs to build a
reflexivity, engaging with the moral and ethical
Promote values inherent in equitable
dilemmas as they balance on the tight rope of
partnerships
relationships, not giving in to cynicism, hoping
Integrate knowledge and action for mutual
for change but not blind to the points of ethical
benefit of all partners
vulnerabilities of various players in the process -
Promote system development as well as local
including of those representing the health system
capacity building to help people gain control
over their own lives
33
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ABBREVIATIONS &
GLOSSARY
ANM
Auxiliary Nurse Midwife
Anganwadi Centre
Children’s Centre for Early Childhood Education and Nutrition
CAB
Community Advisory Boards
CBMP
Community Based Monitoring and Planning
CBO
Community Based Organisation
CBPR
Community Based Participatory Research
CM
Community Monitoring
CHC
Community Health Care
CSO
Civil Society Organisations
Gram Panchayat
Local Governance Body
J SA
Jan Swasthya Abhiyan - People’s Health Movement
JSY
Janani Suraksha Yojana
NGO
Non Governmental Organisation
NRHM
National Rural Health Mission
PHC
Primary Health Care
PRI
Panchayati Raj Institution (Elected members body)
QS
Quinacrine Sterilisation
VHNSC
Village Health Nutrition and Sanitation Committee
37
COPASAH Publications
ISSUE PAPERS
1.
Who are We to Care? Exploring the Relationship between Participation,
Knowledge and Power in Health Systems - Barbara Kaim
2.
How Do We Know We are Making a Difference? Challenges before the
Practitioner of Community - Abhijit Das
3.
Ethical Issues in Community Based Monitoring of Health Programmes:
Reflections from India - Renu Khanna
4.
Developing an Approach towards Social Accountability of Private
Healthcare Services - Anant Phadke, Abhijit More, Abhay Shukla,
Arun Gadre
CASE STUDIES
1.
Women in the Lead: Monitoring Health Services in Bangladesh -
Sarnia Afrin, Sarita Barpanda, Abhijit Das
2.
Accountability and Social Action in Health - A Case Study on Solid Waste
Management in Three Local Authority Areas of Zimbabwe - Training and
Research Support Centre (TARSC) with Civic Forum on Housing (CFH)
3.
Citizen Monitoring to Promote the Right to Health Care and
Accountability - Ariel Frisancho, Maria Luisa Vasquez
4.
Claiming Entitlements: The Story of Women Leaders’ Struggle for the
Right to Health in Uttar Pradesh, India - Abhijit Das, Jashodhara Dasgupta
5.
Community Based Monitoring and Planning in Maharashtra, India Abhay Shukla, Shelley Saha, Nitin Jadhav
6.
Empowering Marginalized Indigenous Communities through the
Monitoring of Public Health Care Services in Guatemala - Walter Flores,
Lorena Ruano
41
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