Rights-based
monitoring and
evaluation of
national HIV
responses
UNAIDS 2019
GUIDANCE
2 Introduction
2 Human rights and the HIV response
3 Objectives of this guidance
3 Guidance structure
5 Components of a human rights-sensitive monitoring and evaluation
framework for the HIV response
5 What is a monitoring and evaluation framework?
5 Important terminology in monitoring and evaluation
6 Why do we need a monitoring and evaluation framework for human rights
programmes in the context of the HIV response?
8 What are the baselines, benchmarks and targets related to human rights
and HIV?
8 What are possible data sources for monitoring and evaluating human rights
programmes in the context of the HIV response?
10 How should indicators for human rights and HIV be selected or developed?
12 What are the key components of a rights-based approach to monitoring
and evaluation of the HIV response?
13 Monitoring and evaluation of the seven key human rights programmes
within the national HIV response
15 Reducing and eliminating stigma and discrimination
18 Legal literacy (“know your rights”)
19 HIV-related legal services
21 Monitoring and reforming laws, regulations and policies relating to HIV
22 Sensitization of lawmakers and law enforcement agents
23 Training for health-care providers on human rights and medical ethics
related to HIV
25 Reducing discrimination against women in the context of HIV
27 A rights-based and rights-sensitive approach for monitoring and
evaluation of national HIV programmes
29 How do we apply rights-based and rights-sensitive approaches in
monitoring and evaluation planning?
30 How do we apply rights-based and rights-sensitive approaches in data
collection and storage?
32 How do we apply rights-based and rights-sensitive approaches in data
analysis?
35 How do we apply rights-based and rights-sensitive approaches in data
dissemination and use?
35 Summary
36 Conclusion
38 References
Contents
2
Introduction
Human rights and the HIV response
Human rights are universal legal guarantees that protect individuals and groups
against actions and omissions that interfere with fundamental freedoms, entitlements
and human dignity
(1)
. The Sustainable Development Goals (SDGs) feature a strong
equity focus and a rights-based approach, putting non-discrimination and equality at
the heart of sustainable development
(2)
. Several of the SDG targets are relevant for a
rights-based response to HIV, including SDG 3 (“Ensure healthy lives and promote well-
being for all at all ages”), SDG 5 (“Achieve gender equality and empower all women
and girls”), SDG 10 (“Reduce inequality within and among countries”) and SDG 16
(“Promote peaceful and inclusive societies for sustainable development, provide access
to justice for all and build effective, accountable and inclusive institutions at all levels”).
As recognized by all United Nations (UN) Member States in the General Assembly
resolutions on HIV, the realization of human rights is an essential element of the HIV
response.
1
It has long been recognized that access to human rights is an essential
element to a successful HIV response, and that violations of human rights, including
acts of discrimination, are major barriers to effective national responses to HIV. Through
the 2016 Political Declaration on Ending AIDS, Member States recommitted to
protecting the human rights of key and vulnerable populations in the context of HIV.
Many of the commitments within the 2016 Political Declaration on Ending AIDS relate
directly to human rights and gender equality. The Declaration calls for eliminating
gender inequalities and ending all forms of violence and discrimination against women
and girls, people living with HIV and key populations. This includes HIV-related stigma
and discrimination in health-care settings. The Declaration also focuses on empowering
people living with, at risk of and affected by HIV to know their rights and to access
justice and legal services to prevent and challenge violations of human rights. Other
commitments in the Declaration require rights-based approaches in order to be
effective.
The 2016 Political Declaration on Ending AIDS was endorsed and supported by
global leaders, as was the requirement to report on national progress towards agreed
upon and evolving targets via the Global AIDS Monitoring (GAM) framework. Global
reporting requirements have evolved over time to include quantitative indicators of
HIV-related discriminatory attitudes, discrimination experienced by people living with
HIV in health-care settings and intimate partner violence. The GAM also includes
questions on the legal and policy environment within the National Commitments and
Policy Instrument (NCPI), which is composed of two parts: Part A is completed by
national authorities, and Part B is completed by nongovernmental partners, including
civil society
(3)
.
1
See the 2001 Declaration of Commitment on HIV/AIDS, the 2006 United Nations Political Declaration on HIV/AIDS, the 2011 Political
Declaration on HIV and AIDS: Intensifying Our Efforts to Eliminate HIV and AIDS, and the 2016 Political Declaration on Ending AIDS.
3
In addition, funding agencies have increasingly aligned their funding guidelines and
tools with human-rights related commitments made by countries. They have done this
by placing increased emphasis on the need to demonstrate attention for human rights
issues and the use of a rights-based approach in the national responses of recipients.
One clear example is the Global Fund to Fight AIDS, Tuberculosis and Malaria (the
Global Fund), which committed to a four-year strategy in 2016 that includes protecting
and promoting human rights as one of its strategic objectives. To achieve this, the
Global Fund will increase efforts to implement and scale up programmes that address
human rights barriers, which are the key programmes recommended by UNAIDS for
reducing stigma, eliminating discrimination and increasing access to justice in national
HIV responses
(4)
.
The UNAIDS guidance document
Fast-Track and human rights
(2017) offers practical
advice on why and how efforts to Fast-Track HIV services should be grounded in human
rights principles and approaches, and why such efforts and responses should include
the seven key programmes at a scale that can effect change
(5)
. This guidance—
Rights-
based monitoring and evaluation of national HIV responses
—builds upon that advice,
elaborating on rights-based monitoring and evaluation of HIV services with the aim to
achieve human rights and equity in the AIDS response and to Fast-Track the end of the
AIDS epidemic as a public health threat.
Objectives of this guidance
The objective of this guidance is to provide an overview of the key components of a
framework for monitoring human rights programmes and protections in the context
of HIV, and how that framework contributes to the broader monitoring of the HIV
response. In particular, the guidance will provide information on the following:
1. How to monitor and evaluate key programmes designed to address HIV-related
human rights commitments.
2. How to apply rights-based or rights-sensitive approaches to monitoring and
evaluation of HIV programmes and activities.
Guidance structure
The first section of this document— “Components of a human rights-sensitive
monitoring and evaluation framework for the HIV response”—provides a brief overview
of monitoring and evaluation principles and practices as they relate to human rights
and HIV. It includes information on: (a) terminology; (b) indicators; (c) available
sources for existing and validated indicators to help monitor interventions related to
human rights and HIV; and (d) some principles and best practices for the design of a
monitoring and evaluation framework for HIV and human rights programmes, and for
the selection of indicators.
The first section also addresses the following questions:
> What is a monitoring and evaluation framework?
> Why do we need a monitoring and evaluation framework for human rights
programmes and HIV?
> What are the baselines, benchmarks and targets related to human rights and HIV?
> What are possible data sources for monitoring and evaluating human rights
programmes and HIV?
4
> How are indicators for human rights and the HIV response selected?
> What are the key components of a rights-based approach to monitoring and
evaluation of the HIV response?
The second section of this guidance—”Monitoring and evaluation of the seven
key human rights programmes within the national HIV response”—describes a
framework for monitoring and evaluation of key programmes to eliminate stigma
and discrimination and to increase access to justice. It includes examples of levels
of change and the types of indicators that can be used to measure outputs and
outcomes.
Finally, the third section—”A rights-based and rights-sensitive approach for monitoring
and evaluation of national HIV programmes”—provides guidance for a rights-based
and rights-sensitive approach to monitoring and evaluation. The aim of this section
is to provide guidance on how to ensure that monitoring and evaluation systems
themselves do no harm, and that they are implemented using human rights principles.
This section addresses the following questions:
> How do we apply rights-based and rights-sensitive approaches in monitoring and
evaluation planning?
> How do we apply rights-based and rights-sensitive approaches in data collection
and storage?
> How do we apply rights-based and rights-sensitive approaches in data analysis?
> How do we apply rights-based and rights-sensitive approaches in data
dissemination and use?
5
Components of a human
rights-sensitive monitoring
and evaluation framework
for the HIV response
What is a monitoring and evaluation framework?
A monitoring and evaluation framework identifies and illustrates: (a) the logic flow
from programme inputs, activities, outputs, outcomes and impacts; (b) the indicators
that will be used to measure the performance and results of the programme outputs,
outcomes and impacts; and (c) how those indicators will be verified (i.e., the source of
information for these measurements).
A results framework or a logframe is a management tool used in the design of a
programme or project that correlates key strategic elements—including objectives,
inputs, outputs, outcomes and impacts—with indicators and the assumptions and risks
that may affect the implementation of the programme or project. Logframes are useful
for planning, executing and evaluating programmes and projects
(6)
.
Important terminology in monitoring and evaluation
Activities: The actions taken or work performed through which inputs such as funds,
technical assistance and other types of resources are mobilized to produce specific
outputs
(6)
.
Data: Specific quantitative and qualitative information or facts that are collected and
analysed
(7)
.
Evaluation: The systematic collection of information about the activities, characteristics
and outcomes of a specific programme to determine its merit or worth. Evaluation
provides credible information for improving programmes, identifying lessons learned
and informing decisions about future resource allocation
(7)
. Evaluation aims to
investigate the achievement of a programme’s results.
Impacts: The cumulative effect of programmes on what they ultimately aim to change
over a longer period of time. Often, this effect will be a population-level health
outcome, such as a change in HIV infection, morbidity and mortality. Impacts are
rarely, if ever, attributable to a single programme, but a programme may, with other
programmes, contribute to impacts on a population
(6)
.
Indicator: A quantitative or qualitative variable that provides a valid and reliable way to
measure achievement, assess performance or reflect change connected to an activity,
project or programme
(6)
.
Inputs: Used to perform activities, an input is a resource used in a programme, such
as financial and human resources from a variety of sources. Also can include curricula,
materials and other resources. Inputs can be outputs from other activities
(6)
.
6
Monitoring: Routine tracking and reporting of priority information about a project or
programme, such as its inputs, outputs, outcomes and impacts
(7)
. Monitoring activities
measure progress towards achieving programme objectives.
Outcomes: The intermediate changes that a programme effects on target audiences or
populations, such as change in knowledge, attitudes, beliefs, skills, behaviours, service
access, policies and environmental conditions
(6)
.
Outputs: The immediate results of programme activities. This relates to the direct
products or deliverables of programme activities, such as the number of counselling
sessions completed, the number of people reached or the number of materials
distributed
(6)
.
Target: The specific performance goal tied to an indicator against which actual
performance will be compared.
Why do we need a monitoring and evaluation framework for
human rights programmes in the context of the HIV response?
In order to effect positive change in the area of advancing human rights (or in any
domain), it is crucial that appropriate mechanisms are in place to do the following:
> Guide the planning, coordination and implementation of the programme.
> Assess the effectiveness of the programme.
> Identify areas for programme improvement.
> Ensure accountability to the people whose lives the programmes aim to improve.
A public health questions approach can be useful to identify pertinent questions
that need to be addressed when planning a comprehensive national monitoring and
evaluation system. These questions are presented in Figure 1, which also lists the main
data collection methods that can be used to answer these questions. Table 1 provides
an example of a generic logical framework that is based on the public health questions
approach to addressing human rights issues related to the HIV response.
7
Figure 1
A public health questions approach to monitoring and evaluation
Sources: Organizing framework for a functional national HIV monitoring and evaluation system. Geneva: UNAIDS; 2008 (http://www.unaids.org/
sites/default/files/sub_landing/files/20080430_JC1769_Organizing_Framework_Functional_v2_en.pdf); Rugg D, Carael M, Boerma T, Novak J.
Global advances in monitoring and evaluation of HIV/AIDS: from AIDS case reporting to program improvement. New Directions for Evaluation.
2004;103:33–48.
Table 1
Generic logical framework showing example programme components that address human rights issues related to the HIV
response and potential data sources from a public health questions perspective
Programme
logic flow
Assessment
and planning
Inputs
(Resources)
Activities
(Interventions,
Services)
Outputs
(immediate
Effects)
Outcomes
(Intermediate Effects)
Impacts
(Long term Effects)
Relationship
clarifier
questions
What’s the current
situation?
Who are the most
affected/marginalized
rights holders? What
are the human rights
barriers? Where do
we aim to be? What
do we need to do?
What resources do
we need?
Why do we need
these inputs?
So that we
can deliver
the following
activities.
What do we need
to do?
Why do we need
these activities?
So that we can
deliver the
following outputs.
What will these
activities yield?
Why do we need
these outputs?
So that we
can deliver
the following
immediate
outcomes.
What are the outcomes of
the activities and outputs?
Why do we need these
outcomes?
So that we can have the
following impacts.
Components
within logic
flow
Situation analysis
Response analysis
Stakeholder capacity
Gaps and needs
Resource analysis
Collaboration plans
Staff
Funds
Materials
Facilities
Supplies
Trainings
Services
Education
Documentation
Interventions
Output
indicators:
# Trained
# Legal Literacy
Materials
Provided
# Clients Served
# Laws assessed
Outcome indicators:
> Provider Behavior
> Risk/Resilience
Behavior
> Service Use
> Percentage of cases
of human rights
violations where
redress has been
sought/resolved
> Clinical Outcomes
> Quality of Life
Impact indicators:
Social and legal norms,
HIV incidence, STI
Incidence,
AIDS Mortality, Economic
impact,
Enjoyment of highest
attainable standard of
health
Data sources Programme
Development
Programme-based Data Population-based
Biological, Behavioral &
Social Data
Population-based
Biological, Behavioral &
Social Data, Modelling
Source: Adapted from Basic terminology and frameworks for monitoring and evaluation. Geneva: UNAIDS; 2008 (http://www.unaids.org/sites/
default/files/sub_landing/files/7_1-Basic-Terminology-and-Frameworks-MEF.pdf, accessed 18 March 2019).
8
What are the baselines, benchmarks and targets related
to human rights and HIV?
A baseline is a point at the outset of an activity or programme that is used for
comparison after that activity or programme has been implemented. It allows us to test
if performance is really changing.
A benchmark is a point of reference or standard against which performance can be
compared or assessed. It can include a value (or values) that has changed over time as
progress is made towards the achievement of an ultimate target.
Targets are specific performance goals against which actual performance will be
compared. They are the objective of a programme or intervention, expressed as
a measurable value (that is, the desired value for an indicator at a particular point
in time)
(6)
. For human rights programmes, such targets could be derived based
on the human rights standards in the core international human rights treaties, or in
commitments made in relevant declarations or strategies
(8–10)
. Some areas, such as
nondiscrimination, are immediate human rights obligations; this means that the only
possible target for them is zero (e.g., zero instances of discrimination experienced for
any reason). For other areas related to advancing human rights, progressive realization
and non-retrogression could guide target setting efforts.
The global commitments endorsed by Member States in the 2016 Political Declaration
on Ending AIDS could guide target setting efforts at the national level and for specific
human rights programmes within the national strategic documents on HIV. This
includes national strategic plans, Fast-Track or acceleration planning, Global Fund
concept notes, and any other relevant policies and plans.
What are possible data sources for monitoring and evaluating
human rights programmes in the context of the HIV response?
Monitoring and evaluation uses multiple types and sources of data, including routine
programme (administrative) data, documentation of human rights violations or
experiences of clients, public health surveillance data, statistical estimates (modelling),
vital statistics and census data, participatory surveys and research studies, and
mid-term and end-term evaluations.
A key component of a monitoring and evaluation framework are its indicators, which
signal the state of a situation
(6)
. As defined in
Human rights indicators: a guide
to measurement and implementation
from the Office of the United Nations High
Commissioner for Human Rights (OHCHR), a human rights indicator is “specific
information on the state or condition of an object, event, activity or outcome that
can be related to human rights norms and standards; that addresses and reflects
human rights principles and concerns; and that can be used to assess and monitor the
promotion and implementation of human rights”
(11)
.
Indicators can be quantitative or qualitative
(6)
. Quantitative indicators are those
that use information in the form of counts, percentages, rankings or indices. This
includes data on the time, cost and quantity for activities and their outputs. Qualitative
indicators are those that use categorical information—a finite set of non-ordered values
(such as a binary “yes/no” variable or some demographic characteristics such as sex)
or ordered values (such as scales of the seriousness of violations of law)—or narrative
information (such as case studies).
9
Human rights indicators can also be categorized as fact-based (objective, directly
observed and verifiable by multiple observers) or judgement-based (subjective and
based on the opinion, perceptions, attitudes and beliefs expressed by individuals).
These types of indicators all have their uses and merits. Indicators that are fact-based
and quantitative, for example, are more easily used in comparisons over time or across
populations, demographic strata or geographic areas. Two important components
of a rights-based or rights-sensitive approach to programme implementation and
monitoring and evaluation, however, are questions of “how” and “why,” and qualitative
approaches are very useful and important for addressing these.
Disaggregated data from other indicators that are not specifically human rights
indicators can also be analyzed from a human rights perspective to assess which
groups are being marginalized and left behind, and who is facing barriers in the
availability, accessibility, acceptability and quality of services. Data that are regularly
collected, such as by national statistics offices, could be useful to analyse and assess
whether human rights are being respected, protected and promoted within the HIV
response, even if the data go beyond the indicators included in the national HIV
monitoring and evaluation plan.
Figure 2 shows the categories of indicators that can be used to monitor compliance
with human rights standards.
Figure 2
Categories of indicators used for human rights
Indicator articulated as a narrative, in a
categorical form, and based on information
on objects, facts or events that are, in
principle, directly observable and verifiable.
Example 1:
the status of ratification of a
human rights treaty for a given country:
ratified / signed / neither signed nor ratified.
Example 2:
factual description of an event
involving acts of physical violence,
a perpetrator and a victim.
Indicator articulated as a narrative, not
necessarily in a categorical form, and based
on information that is a perception, opinion,
assessment or judgement.
Example 1:
assessment expressed in narrative
form of how independent and fair the
judiciary is.
Example 2:
is the right to food fully
guaranteed in law and in practice in
a given country?
QUaLitative
c d
I. >> Human Rights and Indicators: Rationale and Some Concerns
>> Human rights indicators - notion and rationale
Fig. IV
Categories of indicators used for human rights
Indicator articulated in quantitative form
and based on information on objects, facts
or events that are, in principle, directly
observable and verifiable.
Example 1:
prevalence of underweight
children under five years of age.
Example 2:
number of recorded arbitrary
executions.
Indicator articulated in quantitative form and
based on information that is a perception,
opinion, assessment or judgement, using, for
instance, cardinal/ordinal scales.
Example 1:
percentage of individuals who
feel safe walking alone at night.
Example 2:
rating based on an average
scoring by a group of experts/journalists
on the state of freedom of expression in
a given country.
QUantitative
a b
Fact-based or objective jUdgement-based or sUbjective
18
HUMAN RIGHTS INDICATORS
Source: Human rights indicators: a guide to measurement and implementation. Office of the
United Nations High Commissioner for Human Rights; 2012 (http://www.ohchr.org/Documents/
Publications/Human_rights_indicators_en.pdf).
10
How should indicators for human rights and HIV be selected
or developed?
It is now widely recognized that national governments should integrate human rights
programmes and protections into their national HIV responses, and that they should
demonstrate progress towards achieving national and global targets that focus on the
reduction of HIV infections and deaths from AIDS-related illness and the elimination of
stigma and discrimination.
The choice of indicators requires assessment across several criteria. The UNAIDS
Indicator Standards provide a tool for use determining if proposed indicators meet
a set of internationally agreed standards
(12)
. Where possible, it is recommended to
use existing indicators that have been tested rather than developing new indicators,
particularly at outcome and impact levels. For output indicators, there may be relevant
indicators that can be used as examples, but indicators specific to the programme of
interest may need to be developed.
The following series of questions is used in the Indicator Standards to confirm that the
essential components are included in an indicator
(12)
.
> Does the indicator have a clearly stated title and definition?
> Does the indicator have a clearly stated purpose and rationale?
> Is the method of measurement for the indicator clearly defined, including the
description of the numerator, denominator and calculation (where applicable)?
> Are the data collection methodology and data collection tools for the indicator data
clearly stated?
> Is the data collection frequency clearly defined?
> Is any relevant data disaggregation clearly defined?
> Are there guidelines to interpret and use data from this indicator? For human
rights indicators, this would include information on how the indicator measures
compliance with human rights standards.
> What are the strengths and weaknesses of the indicator and the challenges in its
use?
> Are relevant sources of additional information on the indicator cited?
> Has the indicator been field tested and shown to perform as designed?
There are additional indicator characteristics and methodological properties that can
be considered when selecting human rights indicators.
2
> SPICED (subjective, participatory, interpreted, cross-checked, empowering, diverse).
> RIGHTS (relevant and reliable; independent in its data collection methods from
the subjects monitored; global and universally meaningful but also amenable to
contextualization and disaggregation by prohibited grounds of discrimination;
human-rights standards-centric; transparent in its methods, timely and timebound;
simple and specific).
2
For more details, please see: Human rights indicators: a guide to measurement and implementation. Office of the United Nations High
Commissioner for Human Rights; 2012 (http://www.ohchr.org/Documents/Publications/Human_rights_indicators_en.pdf).
11
The Indicator Registry provides a comprehensive repository of indicators to track
the AIDS epidemic and the national, regional and global responses. This includes
indicators to monitor outcomes and impacts of programmes to reduce stigma and
eliminate discrimination (such as in health facilities) and programmes to eradicate
gender-based violence and intimate partner violence that comply with the indicator
standards
(13)
.
Examples of harmonized indicator sets that have been widely used and accepted in
national and global monitoring of human rights in the context of HIV are the following:
> GAM indicators (formerly GARPR, UNGASS). These include indicators under the
commitments of the 2016 Political Declaration on Ending AIDS (on eliminating
gender inequalities and ending all forms of violence and discrimination against
women and girls, people living with HIV and key populations) that measure
discriminatory attitudes towards people living with HIV among the general
population, discrimination experienced by people living with HIV in health-care
settings, and intimate partner violence
(3)
. The GAM also includes the NCPI, which
aims to measure progress in the development and implementation of national HIV
policies, strategies and laws. The NCPI contains questions that can serve to respond
to qualitative and quantitative indicators of the existence of laws and policies that
facilitate human rights or pose barriers to their achievement or protection.
> Set of six indicators on stigma and discrimination in health-care facilities that
captures three programmatically actionable drivers of HIV-related stigma and
discrimination: (a) fear of HIV infection among health facility staff; (b) stereotypes
and prejudices related to people living with HIV or thought to be living with HIV;
and (c) the policy and work environment. They also capture the manifestations of
those drivers (observed, reported, and secondary stigma and discrimination)
(14)
.
Other sets of indicators that may be applicable include those developed by agencies
and initiatives such as the Global Fund and the United States President’s Emergency
Plan for AIDS Relief (PEFPAR).
Sources of data for relevant indicators include the following:
> The People Living with HIV Stigma Index, a tool to measure the forms and
prevalence of stigma and discrimination experienced by people living with HIV
and to document the settings where it occurs
(15)
. The tool is implemented by
and among people living with HIV in collaboration with academic institutions,
governments, the UN and other partners.
> The standard questionnaire of the Demographic and Health Surveys includes
questions used to construct three indicators that measure a driver and negative
manifestations of HIV-related stigma and discrimination among the general
population.
> Additional sources of programme data include administrative records of the Ministry
of Health, hospitals, police, prisons and other institutions, or events-based data
from national human rights institutions, courts and other legal mechanisms, service
providers and nongovernmental organizations.
> Examples of indicators and questions included in the different data sources
mentioned in this section are provided later in this document.
12
Community monitoring efforts can be an important data source: they recognize that
the community is integral to the national response to HIV by actively engaging it in
monitoring progress towards national, regional and global commitments. Community
monitoring can provide real-time strategic information from the point-of-care to use at
the national level on the coverage and quality of policies, services and programmes,
and on the perspective of a diverse set of stakeholders. The People Living with HIV
Stigma Index is an example of community monitoring.
What are the key components of a rights-based approach to
monitoring and evaluation of the HIV response?
A rights-based approach to monitoring and evaluation of the HIV response should
consist of the following components:
> A framework for monitoring and evaluation of the national HIV epidemic and
response that integrates human rights.
> A framework for monitoring and evaluating programmes that are aimed at reducing
and eliminating stigma and discrimination related to HIV and at increasing access to
justice (described in the section “Monitoring and evaluation of the seven key human
rights programmes within the national HIV response”).
> Use of rights-based and rights-sensitive approaches in the monitoring and
evaluation of national HIV programmes (described in the section “A rights-based
and rights-sensitive approach for monitoring and evaluation of national HIV
programmes”). Doing this ensures that the monitoring and evaluation system
itself does no harm, and that it reflects the fundamental principles of participation,
transparency, equality, non-discrimination and accountability.
13
Monitoring and evaluation
of the seven key human rights
programmes within the national
HIV response
This section provides guidance on the monitoring and evaluation of the seven key
programmes recommended by UNAIDS and global partners to reduce stigma and
eliminate discrimination and to increase access to justice in national HIV responses
(4)
.
These key programs are aligned with the global vision of zero new infections, zero
AIDS-related deaths and zero stigma and discrimination
(5)
.
The seven key programmes are complementary: they include broad intervention
strategies that reinforce each other and thus are not mutually exclusive. Multiple
interventions may contribute to a single outcome indicator, and they may be repeated
across programme areas.
Figure 3 shows the conceptual framework that links the objectives and goals of these
programmes to the global HIV commitments.
Figure 3
Conceptual framework linking human rights programme objectives to global commitments in the 2016 Political Declaration
on Ending AIDS
No violence against
people living with
HIV, key populations,
or women and girls
Increased rights
literacy and access
to justice
Stigma and
discrimination by
health-care providers
eliminated
Punitive laws, policies
and practices removed
Political Declaration
commitments eliminate
gender inequality, end
discrimination and violence
and empowerment and
access to justice
14
Table 2
Summary of key human rights programmes to reduce stigma and eliminate discrimination and increase access to justice in
the context of the HIV response
The programme Why is it important?
Stigma and discrimination reduction Addressing stigma and discrimination can positively influence a range of outcomes that are critical to the HIV
response, including behaviours and uptake of HIV services and support services, all of which ultimately influence
individual quality of life and HIV incidence and prevalence.
HIV-related legal services HIV-related legal services can facilitate access to justice and redress in cases of HIV-related discrimination or other
human rights violations.
Monitoring and reforming laws, regulations
and policies relating to HIV
Laws, regulations and policies relating to HIV can negatively or positively impact a national HIV epidemic and the
lives and human rights of those living with and affected by HIV. It is thus essential to monitor and reform laws,
regulations and policies so that they protect and promote human rights, and support (rather than hinder) access to
HIV and health services.
Legal literacy (“know your rights”) Legal literacy programmes teach those living with or affected by HIV about human rights and the national and
local laws relevant to HIV. This knowledge enables them to organize around these rights and laws, to advocate for
concrete needs within the context of HIV, and to seek remedies and redress if rights are violated.
Sensitization of lawmakers and law
enforcement officials
These programmes seek to inform and sensitize those who make the laws (parliamentarians) and those who enforce
them (e.g., Ministers of Interior and Justice, police, prosecutors, judges, lawyers, or traditional and religious leaders)
about the important role of the law in the response to HIV.
Training for health-care workers on human
rights and medical ethics related to human
rights
Human rights and ethics training for health-care providers focuses on: (a) ensuring that health-care providers know
about their own human rights to health and non-discrimination, as well as their human rights obligations in the
context of HIV; (b) reducing stigmatizing attitudes in health-care settings; and (c) providing health-care providers
with the skills and tools necessary to ensure the rights of patients to informed consent, confidentiality, treatment and
non-discrimination.
Eliminating discrimination against women in
the context of HIV
These programmes address gender inequality and gender-based violence, both as causes and as consequences of
HIV infection.
The seven key programmes—which address necessary change at the individual, community, service and structural
levels (see Table 2)—are seen as key to achieving universal access to HIV prevention, treatment, care and support.
Figure 4 shows the key human rights programmes and the intervention levels that they affect.
Figure 4
Key HIV-related human rights programmes and their associated intervention levels
Source: HIV and human rights good practice guide. Hove (UK): International HIV/AIDS Alliance; May 2014 (https://frontlineaids.org/wp-content/
uploads/old_site/Alliance_GPG-HIV_and_human_rights_original.pdf?1407762153).
15
Reducing stigma and eliminating discrimination
Why is it important to monitor these programmes?
The consequences of stigma and discrimination are far-reaching. Prejudice directed
towards people living with HIV creates a hostile environment that impacts not only on
the quality of life of the individuals concerned, but that also has repercussions that go
beyond the individual. They greatly reduce incentives to be tested for HIV, or if the test
is positive, they decrease the likelihood that people will disclose their status to sexual
partners or family, access HIV-related care and treatment, or seek out other forms of
support. Stigma and discrimination manifestations can therefore influence a range of
outcomes that are critical in the HIV response, including behaviours and uptake of HIV
and support services, all of which ultimately influence the quality of life of individuals
and HIV incidence and prevalence.
Examples of activities
Six categories of approaches towards reducing stigma and eliminating discrimination
have been described in the research
(17)
.
1. Information-based approaches. Examples of this type of approach include
documentation of cases of discrimination, information sessions, use of media
(including social media), advertising campaigns, entertainment designed to
educate and amuse (so-called “edutainment”), integration of nonstigmatizing
messages into TV and radio shows, and engagement with religious and community
leaders and celebrities.
2. Skills-building. Examples include participatory learning sessions to reduce
negative attitudes, educational programmes (such as in schools) to explain how HIV
is transmitted and clarify prevailing myths about modes of HIV transmission, and
peer education programmes for specific segments of the population.
3. Counselling and support. Examples include peer mobilization and support
developed for and by people living with HIV that is aimed at promoting health,
well-being and human rights.
4. Contact with affected groups. Examples include community interaction and focus
group discussions involving people living with HIV and members of populations
that are vulnerable to HIV infection.
5. Structural approaches. In the context of HIV-related stigma, structural approaches
encompass activities that address underlying power structures that enable
stigmatization. Therefore, structural approaches are those aimed at removing,
reducing or altering structural factors such as laws that criminalize HIV, hospital or
workplace policies that institutionalize discrimination against people living with HIV
(e.g., labelling of beds or mandatory HIV testing prior to employment), or a lack
of the supplies that allow health-care workers to practice universal precautions.
Structural approaches can also involve including non-discrimination as part of
16
institutional and workplace policies in employment and educational settings, or
efforts to ensure that systems and legal support mechanisms are available for
people living with HIV to seek justice in instances of discrimination.
6. Biomedical approaches. One example is normalizing HIV infection through
activities such as opt-out informed consent-based HIV screening within general
population settings (e.g., community-wide home-based testing or emergency room
testing).
What to measure?
The chosen monitoring indicators or evaluation methods should take into account the
specific domains, target audiences and socio-ecological levels of the implemented
interventions or programmes. For example, interventions or programmes can address
one or several of the following domains
(17)
.
> Drivers of stigma are individual-level factors that negatively influence the
stigmatization process. These drivers include a lack of awareness of stigma and
its harmful consequences, fear of HIV infection through casual contact with
people living with HIV, fear of economic ramifications or social breakdown due
to HIV-positive family and community members, and prejudice towards (and
stereotypes about) people living with HIV and key populations at highest risk of HIV
infection.
> Manifestations are the immediate results, mostly negative, of stigma being applied
to individuals or groups. Some examples include anticipated stigma (fear of
experiencing stigma if HIV status becomes known), perceived stigma (perceptions
of how people living with HIV are treated in a given context), internalized stigma,
shame, experienced or enacted stigma (experiencing stigmatizing behaviours
outside the purview of the law), discrimination (experiencing stigmatizing behaviours
within the purview of the law), and resilience (ability to overcome threats to health
and development after stigma is experienced).
> Facilitators are societal-level factors that influence the stigmatization process.
They include protective or punitive laws, availability of grievance redressal
systems, awareness of rights, structural barriers at the public policy level, cultural
and gender norms, existence of social support for people living with HIV, and
power or powerlessness among people living with HIV to resist and overcome the
manifestations of stigma.
> Intersecting stigmas are the multiple stigmas that people often face due to HIV
status, gender, age, profession, migrant status, drug use, poverty, marital status,
sexual and gender orientation, or any other ground.
Possible intervention audiences include youth, health-care workers, teachers,
caregivers, family members, community members, journalists, workers/employees,
police, community leaders, key populations affected by HIV, and people living with HIV.
The prioritization of audiences should be conducted on the basis of existing country-
specific or jurisdiction-specific evidence about the groups most affected by stigma and
discrimination and the settings where it is most prevalent.
17
Interventions can be focused on one or multiple socio-ecological levels: (a) individual
(knowledge, attitudes and skills); (b) interpersonal (family, friends and social networks);
(c) organizational (organizations, social institutions and workplaces); (d) community
(cultural values, norms and attitudes); and (e) public policy (national and local laws and
policies).
Examples of output indicators
Examples of some output indicators include the following:
> Number and coverage of programmes to train and sensitize health-care providers
on non-discrimination, confidentiality and informed consent.
> Number and coverage of programmes to train and sensitize law enforcement
officers on the human rights of people living with or affected by HIV, sex workers,
gay men and other men who have sex with men, transgender people, and people
who inject drugs in the context of HIV.
> Number and coverage of campaigns at the national and community levels to reduce
HIV-related stigma and discrimination among the general population.
> Number and coverage of programmes at the national and community levels to
inform and educate individuals about their rights within the context of HIV.
Examples of outcome indicators
The following are some examples of outcome indicators (with potential data sources in
parentheses):
> Percentage of people with correct knowledge of how HIV is transmitted,
disaggregated by age and sex (population-based surveys, integrated behavioural
and biological surveillance surveys).
> Percentage of people reporting fear of HIV transmission through casual contact with
people living with HIV (population-based surveys).
> Percentage of people reporting discriminatory attitudes towards people living with
HIV, disaggregated by age and sex (population-based surveys).
> Percentage of people who report negative individual-level and population-level
manifestations of HIV-related stigma (population-based surveys).
> Percentage of people living with HIV reporting discrimination in community settings,
disaggregated by age and sex (People Living with HIV Stigma Index).
> Percentage of people living with HIV reporting discrimination in health-care settings,
disaggregated by age and sex (People Living with HIV Stigma Index).
> Percentage of key populations reporting discriminatory attitudes towards people
living with HIV, disaggregated by age and sex (integrated behavioural and biological
surveillance surveys).
> Percentage of key populations citing fear of stigma as a reason to avoid seeking
health care (integrated behavioural and biological surveillance surveys).
18
> Percentage of health-care staff reporting observed unjust treatment of patients living
with HIV in their facility in the past 12 months (surveys among health-care staff).
> Percentage of key populations who reported physical violence in the last 12 months
because someone believed they are members of a key population group (integrated
behavioural and biological surveillance surveys).
Legal literacy (“know your rights”)
Why is it important to monitor these programmes?
Legal literacy programmes inform those living with or affected by HIV about their
human rights and national and local laws relevant to HIV. This knowledge enables
them to organize around these rights and laws and to advocate for concrete needs
within the context of HIV. Thus, these programmes focus on both legal and rights
knowledge and on strategies regarding how to use this knowledge to improve health
and justice. The programmes may also provide information on different legal or human
rights fora where one can advocate or seek redress, such as patients’ rights groups,
ombudsperson offices and national human rights institutions.
Examples of activities
Legal literacy programmes can form part of other HIV services (e.g., health care
provision, prevention outreach, peer education, support groups or prison health
services), or they can be stand-alone programmes involving a variety of activities:
> Awareness-raising campaigns that provide information about rights and laws related
to HIV through media (e.g., TV, radio, print and Internet) and/or at health-care
settings (e.g., leaflets and stickers).
> Community mobilization and education.
> Community monitoring of human rights violations.
> Community paralegal support and peer outreach.
> Telephone hotline service for information about HIV-related rights.
What to measure?
Interventions or programmes may lead to the following desired changes:
> Change at the individual level: increased awareness, knowledge, skills,
empowerment and participation. Affected populations know their rights and how to
enforce them.
> Change at the community level: actions taken by communities around law and
human rights issues.
> Change at the service level: people are increasingly able to access services without
fear of discrimination.
19
Examples of output indicators
Examples of some output indicators include the following:
> Number of persons reached through education sessions about HIV-related rights
and laws.
> Amount of materials on rights and legal literacy distributed.
> Number of peer outreach sessions conducted.
> Number of community paralegals.
> Number of recipients of peer outreach activities.
> Number of hotline calls received and number of referrals made to legal services.
> Number of cases of HIV-related discrimination received.
Examples of outcome indicators
The following are some examples of outcome indicators (with potential data sources in
parentheses):
> Knowledge of HIV-related rights among people living with HIV and key populations
(programme data).
> Percentage of people living with HIV who sought redress when their rights were
violated (People Living with HIV Stigma Index).
HIV-related legal services
Why is it important to monitor these programmes?
HIV-related legal services can facilitate access to justice and redress in cases of
HIV-related discrimination or other human rights violations, promoting human rights
and removing barriers to service access. Examples of instances where such legal
services might be needed include:
> Breaches of privacy and confidentiality.
> Illegal action by the police.
> Discrimination in health care, employment, education, housing or social services.
> Denial of property and inheritance rights.
It is important to monitor legal service provision to see that it is geared to the needs of
those most affected, is reaching all those in need, and is able to bring about change.
Evaluating it to document its effectiveness beyond the individual cases resolved is also
important.
Examples of activities
HIV-related legal services may include the following activities:
> Training for people living with HIV and key populations on rights and available
redresses under the law.
20
> Community paralegal support.
> Legal hotlines and Internet-based provision of advice.
> Legal information and referrals.
> Legal advice and representation, including through pro bono clinics.
> Alternative and community forms of dispute resolution.
> Engaging religious or traditional leaders and traditional legal systems (e.g., village
courts) with a view to resolving disputes and changing harmful traditional norms.
> Strategic litigation.
What to measure?
Interventions or programmes may lead to the following desired changes:
> Change at the individual level: increased awareness of rights, improved knowledge
and greater empowerment to access justice.
> Change at the service level: increased knowledge, awareness and skills to provide
legal support services, improved community outreach of legal services, and
greater accountability from services (e.g., health services, police services and the
employment sector) if violations are challenged.
> Change at the community and structural levels: this may occur where successful
challenges bring about changes in law, policy, values and practices.
Examples of output indicators
Examples of some output indicators include the following:
> Number of training sessions held.
> Number of individuals provided with training.
> Number of community paralegals providing services.
> Number of referrals for legal support or advice services for people living with HIV
and other affected populations.
> Number of cases taken to judicial process.
> Number of people using legal support services.
Examples of outcome indicators
The following are some examples of outcome indicators (with potential data sources in
parentheses):
> Knowledge among key populations of their rights and available redress (programme
data).
> Number and percentage of referred cases satisfactorily resolved (programme data).
> Percentage of people living with HIV who sought redress when their rights were
violated in the past 12 months (People Living with HIV Stigma Index).
21
Monitoring and reforming laws, regulations and policies
relating to HIV
Why is it important to monitor these programmes?
Laws, regulations and policies relating to HIV can negatively or positively impact a
national HIV epidemic and the lives and human rights of those living with and affected
by HIV. It is thus essential to monitor and reform laws, regulations and policies so they
support—rather than hinder—access to HIV and health services.
Examples of activities
Monitoring and reforming laws, regulations and policies relating to HIV may involve the
following activities:
> Legal environment assessments and monitoring of the impact of policies, laws and
regulations in terms of uptake of (and retention on) HIV services.
> Assessment of legal provisions for access to justice for people living with or
vulnerable to HIV.
> Advocacy and lobbying for law reform.
> Sensitizing religious and traditional leaders, parliamentarians and ministers of
government departments (e.g., Justice, Interior, Corrections, Finance, Industry,
Labour, Women’s Affairs, Education, Immigration, Housing, Defence, Health and
Trade).
> Reform of regulations and policies.
> Promotion of the enactment and implementation of laws, regulations and guidelines
that prohibit discrimination and support access to HIV prevention, treatment, care
and support.
What to measure?
Interventions or programmes may lead to the following desired changes:
> Change at the service level: increased knowledge and understanding of the legal
and regulatory framework and its impact on HIV among lawmakers, law enforcement
officials and members of the judiciary.
> Changes at the individual and community levels: awareness, understanding and
knowledge of laws, regulations and policies among people living with and affected
by HIV.
> Changes at the structural level: whether recommendations were implemented.
Examples of output indicators
Examples of some output indicators include the following:
> Legal environment assessment or legal audits and desk reviews completed and
disseminated to key stakeholders.
22
> Access to justice assessment report completed and disseminated to key
stakeholders.
> Number of engagements on relevant issues with parliamentarians and ministers of
government departments.
Examples of outcome indicators
The following are some examples of outcome indicators (with potential data sources in
parentheses):
> Existence of non-discrimination laws that specify protections for key populations and
people living with and affected by HIV (legal and policy documents).
> Existence of laws and/or policies that present barriers to the delivery of HIV
prevention, testing and treatment services or the accessibility of these services (legal
and policy documents).
> Awareness of human rights standards and international guidelines among
lawmakers, law enforcement agents and members of the judiciary (programme
data).
Sensitization of lawmakers and law enforcement agents
Why is it important to monitor these programmes?
These programmes seek to inform and sensitize those who make the laws
(parliamentarians) and those who enforce them (Ministers of Interior and Justice,
police, prosecutors, judges, lawyers, and traditional and religious leaders) about the
important role of the law in the response to HIV. This includes protecting those affected
by HIV from discrimination and violence and supporting access to HIV prevention,
treatment, care and support. Sensitization programmes aim to help ensure that
individuals living with and vulnerable to HIV can access HIV services without fear of
being targeted by law enforcement, and that they can lead full and dignified lives, free
from discrimination, violence, extortion, harassment, and arbitrary arrest and detention.
Examples of activities
Sensitization of lawmakers and law enforcement agents may involve the following
activities:
> Sensitization of parliamentarians, personnel from the Ministries of Justice and
Interior, judges, prosecutors, religious and traditional leaders, police, and prison
personnel on the topics of HIV, the role of law and the enforcement of protective
laws in the context of the HIV response.
> Development of HIV workplace policies and practices to protect lawmakers and
police from HIV infection.
> Facilitated community dialogues or joint activities with people living with HIV and
members of other key populations, including on law enforcement that undermines
the HIV response.
> Efforts to improve prison policies and practices regarding access to HIV prevention,
treatment and harm reduction.
23
> Facilitated discussions and negotiations among HIV service providers, those who
access services, and police in order to address law enforcement practices that
impede HIV prevention, treatment, care and support efforts.
> Training for prison personnel regarding the prevention, health-care needs and
human rights of detainees living with or at risk of HIV infection.
What to measure
Interventions or programmes may lead to the following desired changes:
> Change at the structural level: improved protection of the rights of people living
with HIV and other key populations through laws, policies and judgments on HIV
and AIDS that are compliant with international human rights standards.
> Change at the service level: improved access to justice for HIV-related human rights
violations and increased awareness and understanding among law enforcers. This
may lead to changes at the individual and community levels, with reduced stigma
and discrimination, decreased human rights violations of people living with HIV and
key populations, and increased access to justice.
Examples of output indicators
Examples of some output indicators include the following:
> Number of sensitization sessions held on HIV and human rights in the past 12
months (disaggregated by target audience).
Examples of outcome indicators
The following are some examples of outcome indicators (with potential data sources in
parentheses):
> Percentage of key populations reporting having experienced physical violence
who identified police as the perpetrator(s) (integrated behavioural and biological
surveillance surveys).
> Percentage of people living with HIV who sought redress when their rights were
violated in the past 12 months (People Living with HIV Stigma Index).
Training for health-care providers on human rights and medical
ethics related to HIV
Why is it important to monitor these programmes?
Human rights and ethics training for health-care providers focuses on two objectives.
The first is eliminating discrimination against users of health services, reducing
stigmatizing attitudes in health-care settings and providing health-care providers with
the skills and tools necessary to ensure that the rights of patients to informed consent,
confidentiality, treatment and non-discrimination are protected. The second objective is
to ensure that health-care providers know about their own human rights in the context
of HIV, including the rights to HIV prevention and treatment, universal precautions,
compensation for work-related infection, and non-discrimination. This capacity-building
is part of the comprehensive approach described in the
Agenda for zero discrimination
24
in health care
, occurring alongside the leadership and commitment of a broad range
of stakeholders to multisectoral efforts to eliminate discrimination in health care,
empower users of health services and produce stronger accountability
(18, 19)
.
Examples of activities
Human rights and ethics training should be conducted with the following groups:
> Individual health-care providers in order to raise awareness of the negative impact
that stigma, breaches of confidentiality and neglect of informed consent in health-
care settings can have on the lives of patients and their human rights. The fears and
misconceptions that health-care providers have about HIV transmission also should
be addressed, and human rights competencies, understanding, compassion and
professionalism should be promoted.
> Health-care administrators to ensure that health-care institutions provide the
information, supplies and equipment necessary to make sure health-care workers
have access to HIV prevention and treatment (including the universal precautions
needed for prevention of occupational transmission of HIV), and that they are
protected against discrimination.
> Health-care regulators to ensure the enactment and implementation of policies that
protect the safety and health of both patients and health-care workers, and those
that prevent discrimination against people living with and vulnerable to HIV.
What to measure?
Interventions or programmes may lead to the following desired changes:
> Change at the service level: increased awareness, knowledge and acceptance of
human rights, improved services, and increased access to prevention, treatment, care
and support. These changes will lead to change at the individual level for affected
populations, including their ability to access health services free from stigma and
discrimination, thus contributing to the highest attainable standard of health.
Examples of output indicators
Examples of some output indicators include the following:
> Number of education sessions held and the number of health-care workers,
administrators and educators reached.
Examples of outcome indicators
The following are some examples of outcome indicators (with potential data sources in
parentheses):
> Mechanisms in place to record and address cases of HIV-related discrimination
(NCPI).
> Percentage of health-care facilities with policies that protect the health and safety of
patients, including people living with HIV and other key populations (surveys among
health-care staff).
> Percentage of health-care facilities with policies that protect the health and safety of
health-care workers (surveys among health-care staff).
25
> Percentage of health-care facilities with policies to prevent discrimination against
people living with and vulnerable to HIV (surveys among health-care staff).
> Percentage of people living with HIV reporting having experienced discrimination in
health care in the past 12 months (People Living with HIV Stigma Index).
> Percentage of key populations citing stigma as a reason for avoiding seeking health
care (integrated behavioural and biological surveillance surveys).
> Percentage of health-care staff reporting observed unjust treatment of patients living
with HIV in their facility in the past 12 months (surveys among health-care staff).
Reducing discrimination against women in the context of HIV
Why is it important to monitor these programmes?
While all other programmes are intended to apply gender-sensitive approaches, these
programmes specifically address gender inequality and gender-based violence as both
causes and consequences of HIV infection. They include programmes that address
harmful gender norms and practices for women and girls, such as:
> Culturally accepted practices, such as cross-generational sex, concurrent
partnerships, wife inheritance, early or forced marriage, female genital mutilation,
and homophobia and transphobia.
> Inequality in sexual and reproductive decision-making.
> Gender barriers to health services.
> Discrimination in inheritance, property holding, marriage, divorce and custody.
> Sexual and other violence.
> Lack of equal access to educational and economic opportunity.
> Disproportionate burden of care and lack of support to caregivers in HIV-affected
households.
Such programmes should be complemented by programmes focusing on men and
boys that address harmful gender norms that make people—women and girls
and
men
and boys—vulnerable to HIV infection.
Examples of activities
These programmes can include:
> Activities to strengthen the legal and policy environment to ensure that laws protect
women and girls from gender inequality and violence.
> Efforts to reform domestic relations, domestic violence laws, and law enforcement in
instances where they fail to protect women sufficiently or where they create barriers
to HIV prevention, treatment, care and support.
> Efforts to reform property, inheritance and custody laws to ensure equal rights for
women, children and caregivers affected by HIV.
> Age-appropriate sexuality and life skills education programmes that also seek to
reduce gender inequality and gender-based violence.
26
> Programmes to reduce harmful gender norms and traditional practices that put
women and girls and men and boys at risk of HIV infection, including capacity-
building of civil society groups working for women’s rights and gender equality.
> Programmes to increase access to education and economic empowerment
opportunities for women living with or vulnerable to HIV infection.
> Integrated health services with a well-functioning referral system, including
post-rape care and post-exposure prophylaxis (PEP).
What to measure?
Interventions or programmes may lead to the following desired changes:
> Change at the individual level: increased awareness and knowledge of women’s
rights, gender equality and life skills, and greater empowerment.
> Change at the community level: changes in norms and practices around gender
equality and greater rights for women and girls, men and boys, transgender people
and caregivers affected by HIV.
> Change at the structural level: protective laws to reduce gender inequalities and
gender-based violence.
Examples of output indicators
Examples of some output indicators include the following:
> Number of education sessions about women’s rights and gender equality.
> Number of women reached by education sessions about women’s rights and gender
equality.
> Number of primary health-care facilities with functioning referral systems for
survivors of gender-based violence.
> Number of capacity-building sessions held with civil society groups on the issue of
women’s rights and gender equality.
Examples of outcome indicators
The following are some examples of outcome indicators (with potential data sources in
parentheses):
> Existence of policies and laws relating to gender inequality and violence that impact
HIV vulnerability for women and girls (policies and laws on early marriage, age of
consent, girls’ education, property and custody rights, marital rape, intimate partner
violence, female genital mutilation and protection from forced sterilization).
> Percentage of ever-married or partnered women (aged 15–49 years) who
experienced physical and/or sexual violence by a current or former intimate partner
in the last 12 months (population-based surveys).
> Percentage of women (aged 15–49 years) who experienced sexual violence by
persons other than an intimate partner since age 15 (population-based surveys).
> Percentage of girls (aged 15–19 years) who report experiencing forced sexual
intercourse or any other forced sexual acts, by age at first incident of violence
(population-based surveys).
27
A rights-based and rights-sensitive
approach for monitoring and
evaluation of national HIV programmes
Rights-based and rights-sensitive approaches to the monitoring and evaluation of HIV
responses refers to the integration of human rights standards and principles into the
monitoring and evaluation process. Beyond the issue of what is measured, human
rights standards and principles also apply to how measurement is done, with the key
human rights principles that are applicable to rights-based HIV programme planning
and implementation
also applicable to HIV programme monitoring and evaluation
(5,
11, 20, 21)
.
3
These principles include the following:
> Participation of people living with and affected by HIV. All relevant stakeholders
should be involved in HIV programme monitoring and evaluation, just as they
should be involved in HIV programme implementation itself, such as through
community monitoring.
4
This promotes the right to participation and gives
stakeholders the power to bring about change in their own lives. Participation
ensures that HIV programmes are designed, developed and implemented using
a rights-based or rights-sensitive approach. Along with the direct benefits to the
overall HIV programme, using such an approach signals a commitment at the level
of the State to uphold and promote human rights, and such messages can be a
powerful motivators to other government and nongovernment organizations. Full
and equal participation means:
— Involving a diverse range of people living with HIV and other key populations
within the organizational structures and processes for monitoring and
evaluation.
— Involving a wide range of stakeholders, including community-based
organizations of key populations and other affected communities, civil society
organizations and faith-based organizations working for and with these
communities, government institutions, traditional leaders, the private sector,
donors and international organizations.
— Ensuring that structures and processes are designed to promote the equal and
full participation of all stakeholders.
3
In step with the 2030 Agenda for Sustainable Development and the SDGs, OHCHR has developed a guidance note that aims to provide
general guidance and elements of a common understanding on a human rights-based approach to data, with a focus on issues of data
collection and disaggregation. Such an approach will help to bring together relevant data stakeholders and develop communities of
practice that improve the quality, relevance and use of data and statistics in way that is consistent with international human rights norms
and principles. For more information, please see: A human rights-based approach to data. Leaving no one behind in the 2030 agenda for
sustainable development. Geneva: OHCHR; 2018 (http://www.ohchr.org/Documents/Issues/HRIndicators/GuidanceNoteonApproachtoData.
pdf).
4
Article 25 of the International Covenant on Civil and Political Rights explicitly recognizes the right of citizens to participate in public affairs.
This is supplemented by more general rights to participation, which can be found in treaties such as the International Covenant on Economic,
Social and Cultural Rights (Articles 13.1 and 15.1), the Convention on the Elimination of All Forms of Discrimination Against Women (Article
7), the Convention on the Rights of the Child (Article 12) and the Convention on the Rights of Persons with Disabilities (Article 29). It also
can be found in political declarations, including the Declaration on the Right to Development (Articles 1.1, 2 and 8.2), the Declaration on the
Rights of Indigenous Peoples (Articles 5, 18, 19 and 41) and the Millennium Declaration (paragraph 25).
28
— Identifying capacity-building needs to promote the equal and full participation
of stakeholders who lack experience and skills.
— Identifying and addressing other barriers to equal and full participation for
specific populations.
> Empowerment. This entails a combination of full stakeholder participation (as
described above) and capacity-building of the stakeholders and the monitoring
and evaluation implementers. It also includes accountability mechanisms for the
purposes of oversight or redress. Empowerment, community monitoring and
capacity-building help to ensure that key stakeholders are able to access and
participate in the monitoring and evaluation processes, and that they can uphold the
rights-based and rights-sensitive approaches in use. Since it educates monitoring
and evaluation implementing organizations about their obligations, capacity-
building can help to promote accountability, and it also informs participating
stakeholders and informants about their rights and existing mechanisms so that they
can take action when these are violated or unfulfilled.
> Equality and non-discrimination. This includes valuing the people at the heart
of the epidemic and the response, and ensuring that the systems in place as part
of the response do no harm (e.g., they do not further stigmatize groups, do not
discriminate against people and do not violate human rights). Furthermore, such an
approach should ensure that data pertaining to all key and affected populations is
available and used to guide programme design and funding.
> Transparency. The right to freedom of expression explicitly includes “freedom to
seek, receive and impart information and ideas of all kinds, regardless of frontiers,
either orally, in writing or in print, in the form of art, or through any other media of
[a person’s] choice.” (22) For this right to be realized in practice, relevant statistical
information must be publicly available in a timely way and in an accessible format,
taking into account considerations such as literacy levels, age, disability, language
and cultural background (where applicable) (23).
> Accountability. By setting out a framework by which monitoring and evaluation
activities will be carried out using methods, mechanisms and processes that adhere
to and promote human rights—and by establishing products that capture progress
in realization of human rights—the national HIV programme promotes accountability
for human rights violations and contributes to a reduction in rights violations.
Oversight mechanisms guaranteeing the other human rights principles, such as
participation of those affected in all stages of monitoring and evaluation, are also an
important contributor to accountability.
Figure 5 demonstrates how these principles can be operationalized through a
programme or project cycle.
29
Figure 5
Programme or project cycle
Source: HIV and human rights good practice guide. Hove (UK): International HIV/AIDS Alliance; May 2014
(https://frontlineaids.org/wp-content/uploads/old_site/Alliance_GPG-HIV_and_human_rights_original.pdf?1407762153).
How do we apply rights-based and rights-sensitive approaches
in monitoring and evaluation planning?
Just as national HIV strategic plans should include human rights-specific programmes
and rights-based approaches, so should the national monitoring and evaluation plan.
Rights-based or rights-sensitive monitoring and evaluation plans should include the
following activities:
> A situational assessment or environmental scan of existing or past HIV programme
monitoring and evaluation plans and mechanisms should be conducted in order to
identify current strengths and challenges with respect to the collection of data on
human rights indicators.
> Similarly, a scan should be conducted to identify strengths and gaps with respect
to the processes used for the collection of these data. In particular, this scan should
assess the extent to which rights-based or rights-sensitive approaches (that is, the
principles of participation, empowerment, non-discrimination and accountability)
were applied in the design of the monitoring and evaluation system and in the
collection, analysis and use of monitoring and evaluation data. Necessarily, such
30
a scan should be planned and conducted in collaboration with people living with
HIV, key populations and nongovernmental organizations that form part of the HIV
response, and input should be solicited from these groups.
> Findings from these assessments and scans should be used as input in the updating
or modification of the national monitoring and evaluation plan, and the monitoring
and evaluation planning process itself should also incorporate a rights-based
approach.
> Budgets of national strategic plans should include appropriate allocation of human
and financial resources for the data collection to support the monitoring and
evaluation plan, but they also should include resources for the application of a
rights-based approach. This includes a budget for capacity-building on the subject
of human rights and rights-based approaches for staff within the organizations
that are implementing the monitoring and evaluation. Similarly, the budget should
include resources for capacity-building of key stakeholders in order to enable their
full participation in the monitoring and evaluation process. Resources required
to support monitoring and evaluation-related activities to be conducted by key
nongovernmental stakeholders must also be factored into the plan.
> An additional important factor to account for in the incorporation of a rights-based
approach is the time required to use a participatory approach, which necessitates
additional consultation and collaborative efforts not previously incorporated in
monitoring and evaluation planning and implementation.
How do we apply rights-based and rights-sensitive approaches
in data collection and storage?
Monitoring and evaluation uses multiple types and sources of data, including routine
programme (administrative) data, public health surveillance data, statistical estimates
(modelling), vital statistics and census data, participatory surveys and research studies,
and mid-term and end-term evaluations. The collection, processing and dissemination
of statistical information have implications for the rights to information, privacy, data
protection and confidentiality, and safety and security, and the process requires
conforming to legal and institutional standards related to ethics, statistics and human
rights. The principles of participation and self-identification also are important
(11)
.
Participation
Within the context of data collection and storage, participation involves:
> The inclusion of people living with HIV and key populations in the design of
monitoring and evaluation data collection tools (e.g., questionnaires for surveys,
reporting forms for public health surveillance, and evaluation questionnaires and
information collection instruments).
> The inclusion of people living with HIV, key populations and nongovernmental
organizations in data collection, such as programme data for ongoing programme
monitoring and data collection in special studies (e.g., the collection of qualitative
information to support process assessments and evaluation studies, participation on
study teams for behavioural surveys, and research studies).
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Self-identification
The principle of self-identification requires that people should have the option of self-
identifying when faced with a question seeking sensitive personal information
(11)
.
This is particularly relevant within the HIV response, as HIV disproportionately affects
people who are vulnerable or exposed to HIV due to circumstances that may also make
them vulnerable to discrimination on the grounds of their sex, gender identity, sexual
orientation, race or ethnicity, sexual practices, occupation, or other social or physical
attributes.
Furthermore, the use of rights-based principles dictates that the dimensions to be
captured within data collection instruments should be developed jointly with the
affected key populations in order to ensure that the information sought is relevant and
non-discriminatory.
Rights to information, privacy, data protection and confidentiality
The right to information is guaranteed by the Universal Declaration of Human Rights
(Article 19) and the International Covenant on Civil and Political Rights (Article 19).
The right to privacy, set out in the International Covenant on Civil and Political Rights
(Article 17), relates to the principle of data protection, which requires that all data
collection activities must respect robust guarantees to prevent the abuse of sensitive
data.
Within the governing act in force within a state, the rights to information and privacy
specify the conditions by which individuals can access records in the custody or under
the control of public bodies. They also indicate the limits or controls in the manner in
which public bodies collect personal information from individuals, and the protections
against the unauthorized use or disclosure of personal information by public bodies.
Within the context of monitoring and evaluation of HIV programmes, the following are
applicable:
> Staff within implementing organizations and participating stakeholders should all be
cognizant of the relevant data needs and collect only what is necessary to the extent
necessary, opting for non-personal data as much as possible.
> Data collection activities should be highly focused on collecting information at the
finest level of disaggregation that is absolutely necessary, with a clear rationale for
each data element collected.
> Implementing organizations and data holders should have clear policies in place
relating to providing access to information and safeguarding the privacy of the
individuals from whom information was collected.
> Data holdings should be subject to privacy impact assessments that aim to identify
the risk posed to the individual and the organization if a privacy breach were to
occur, and to determine the appropriate data security requirements for such data.
> The appropriate data security measures should be put in place within organizations
that are involved in data collection and storage.
Policies should also be instituted to specify the conditions and requirements around
data transmission and data sharing with other parties. Ordinarily, only nonpersonal data
can be shared; informed consent should be sought for personal data information flows.
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Standards and ethics
Given the diverse possible data sources used for the monitoring and evaluation of
HIV responses, it is to be expected that the guidance around standards and ethics
applicable to the data sources is similarly diverse. In general, however, the following
are relevant:
> Data collection methods and process should be subject to some form of ethical
review. A good starting place is institutional research ethics boards or committees
for implementing organizations or associated/affiliated accredited research facilities
(e.g., universities).
> Data collection methods should safeguard the safety and security of respondents
and interviewees, particularly when criminalized key populations are involved.
> The process of informed consent should be applied in all instances, including in the
collection of administrative data. This ensures that individuals understand why they
are being asked for specific information and that they understand how that data
will be used. They should also have the freedom to refuse to provide information
without fear of repercussion (such as reduced access to services or lower quality
care).
> As much as possible, surveys should be conducted in a way that ensures the
anonymity of participants (i.e., no personal identifiers should be collected as part of
the survey). Alternatively, if identifying information is collected, efforts should be put
in place to anonymize the data after collection (i.e., identifiers should be removed
from the data sets completely or separated from the main data set).
> Survey responses should be grouped and person-specific identifiers should be
stripped to protect the identity of respondents.
> Population data should be decentralized and the creation of a bridge file (e.g.,
where data are stored in another country outside the jurisdiction of local courts)
should be encouraged, particularly in countries where the requisite institutions are
weak and easy to influence.
> Clear harm mitigation strategies with assigned responsibilities, reporting
obligations, access to remedies and compensation for data subjects should be in
place in case of data leaks or other security breaches
(24)
How do we apply rights-based and rights-sensitive approaches
in data analysis?
The indicators within a monitoring and evaluation framework form the basis of the
data analysis plan. In addition to the application of the principles of participation,
empowerment and non-discrimination described above, a rights-based and rights-
sensitive approach to data analysis incorporates the following analysis methodologies:
> In addition to national aggregates, indicators should be disaggregated to data for
the smallest relevant group of individuals who are bound by common human rights
characteristics. In the context of HIV, this corresponds to age- and gender-based
analysis and disaggregation, as well as disaggregation by key populations affected
most by the HIV epidemic (e.g., gay men and other men who have sex with men,
people who inject drugs, sex workers, transgender people and prisoners) that are
identified within the available epidemiological data.
33
— It is important to note that input from key informants, key populations,
community-based organizations and other nongovernmental organizations
active within a country’s HIV response is crucial for identifying key populations
for such disaggregation: the lack of data within epidemiological profiles may
simply reflect a lack of the data collection mechanisms or specificity that is
necessary to identify issues. For example, an issue with HIV transmission within
a key population such as migrants may be missed if the existing surveillance
systems do not collect information on citizenship or residency status.
> When indicators are readily available, an analysis and assessment combining three
measurement perspectives can be systematically carried out, especially using
outcome and process indicators: the “average perspective” shows the country’s
overall progress, the “deprivation perspective” shows the progress for its most
deprived groups, and the “inequality perspective” shows progress in narrowing
inequalities between its population groups or regions (see Figure 6).
> A policy on how to handle small cell sizes should be pre-established. Small cell sizes
can occur when data sets with an overall small number of cases are disaggregated.
The resulting small cell counts poses two problems: possible issues with poor data
quality and possible risk of confidentiality breaches. For example, disaggregation of
data on one indicator by geographic location, sex and sexual orientation—such as
the count of gay men and other men who have sex with men in a particular location
who have experienced a human rights violation (such physical abuse by police) in
the past year—may result in fewer than five people. This is problematic for several
reasons:
— From a data quality perspective, it may be difficult to assess the importance
of the indicator data or to assess trends across geographical areas because
smaller numbers are associated with higher uncertainty or sampling error for the
indicator value.
— Analyses based on small samples also may lead to incorrect conclusions
because the sample may be biased or not representative.
— From the perspective of privacy and confidentiality, such small numbers may
inadvertently reveal information about participants. Going back to the earlier
example, the small numbers may reveal the sexual orientation of some men in a
particular geographical location if it is generally known within their social circles
that they experienced physical abuse from the police within the indicator time
frame.
> Interpretation of data should be conducted in a sensitive and thoughtful manner in
order to avoid further stigmatizing the implicated populations. Use of terminology
like “drug abuse,” “risky behaviour” or “promiscuous” should be avoided, as it
ascribes blame to the people so described (25).
> The absence of information on relevant indicators can itself be an indicator of a lack
of willingness and commitment on the part of key players within the HIV response to
implement or monitor human rights.
— An example might be when process indicators like the proportion of staff
formally investigated for physical and nonphysical abuse are not compiled or
disseminated, or when data on sexual orientation are not available in states
where there are punitive laws targeting specific groups (e.g., laws criminalizing
same-sex sexual behaviours).
34
> Quantitative data should not be used to make conclusions in isolation. Rather, these
data should be used along with data from other quantitative indicators and with
qualitative information; this will help in the interpretation and contextualization
of the findings. It is important to remember that an indicator is merely a signal
of a possible state, and that additional explanatory information is important to
understand that state and to get to the “why” questions.
— As an example, when a new indicator is introduced, the data on that indicator
may suggest a low prevalence of a human rights violation. This may be the
result of inadequate data collection mechanisms or low will to report on such
data (perhaps due to perceived risks of reporting). Over time, data collection
and reporting may improve, perhaps as a result of increased awareness of the
importance of this human rights dimension, programmes that address risks of
reporting, or data collection mechanisms and additional data sources. Within
this scenario, a time trend analysis may show a significant rise in the prevalence
of violations, whereas the contextual information would reveal that the rise is an
artefact of these data collection and reporting changes.
Figure 6
Three perspectives for human rights assessments
Source: Human rights indicators: a guide to measurement and implementation. Office of the United Nations High
Commissioner for Human Rights; 2012 (http://www.ohchr.org/Documents/Publications/Human_rights_indicators_en.pdf).
35
How do we apply rights-based and rights-sensitive approaches
in data dissemination and use?
Human rights monitoring and evaluation requires access by all stakeholders, in
particular the rights holders, to information on the realization of their rights. As such, a
rights-sensitive monitoring and evaluation framework should include the following:
> A schedule for the dissemination of the information produced by the monitoring
and evaluation activities. In partnership with key stakeholders, this publication and
dissemination plan should take into account the various audiences, consumers and
users of the information, and it should ensure that the method of dissemination is
accessible (e.g., at the appropriate literacy level, using widely available media and in
the locally prevalent language).
> For surveys focused on key populations, the principle of first access is a
recommended approach: the key population from which the data were collected
should be the first audience for the knowledge products produced.
> Knowledge products should be strategically designed and have a clear purpose,
audience and dissemination plan. The principles of participation, empowerment,
transparency and non-discrimination should also form part of the planning for each
knowledge product.
Summary
Throughout the monitoring and evaluation planning and implementation phases, the
key questions outlined in Figure 7 can be used as a guide to assess if rights-based and
rights-sensitive approaches have been used.
Figure 7
Checklist for right-based and rights-sensitive process assessment in monitoring and evaluation
Were the beneficiaries involved in the needs assessment, monitoring and evaluation framework
development, data collection, data analysis, and knowledge product development and dissemination?
Does the monitoring and evaluation framework use the principles of rights-based approaches:
participation, empowerment, non-discrimination and accountability?
Does the monitoring and evaluation system respect basic rights to privacy, confidentiality and
informed consent?
Are the monitoring and evaluation system, process and outputs accessible and acceptable to all
without discrimination?
Does the monitoring and evaluation system collect information on the most vulnerable or most
affected populations, both with respect to HIV and to human rights?
Source: Adapted from: HIV and human rights good practice guide. Hove (UK): International HIV/AIDS Alliance; May 2014 (https://frontlineaids.org/wp-content/uploads/old_site/Alliance_GPG-
HIV_and_human_rights_original.pdf?1407762153, accessed 18 March 2019), p. 63.
36
Conclusion
AIDS today is an epidemic of exclusion, discrimination and vulnerability. The science
is clear, and there are tools to end AIDS as a public health threat. However, many
populations across many countries continue to face human rights barriers in exercising
their right to development and to accessing the best available science.
The 2030 Agenda for Sustainable Development has put equality and
non-discrimination at the core of its shared framework for action. To end AIDS and
achieve healthy lives for all as mandated by SDG 3, we need to work together to tackle
the human rights barriers in order to ensure rights-based approaches that Fast-Track
the response.
In its preamble, the 2016 Political Declaration on Ending AIDS explicitly states the
importance of the “promotion, protection and fulfilment of all human rights and the
dignity of all people living with, at risk of, and affected by HIV” as an objective and
means of ending the AIDS epidemic. The Political Declaration on Ending AIDS has also
mainstreamed human rights approaches: two out of the 10 Fast-Track commitments
to end AIDS by 2030 include a dedicated focus to advancing human rights,
empowerment, access to justice and the elimination of all forms of discrimination and
violence.
In order to assess progress towards these commitments, it is important for national
monitoring and evaluation systems to be rights-sensitive and to capture progress
towards removing human rights barriers to effective AIDS responses.
This guidance on rights-based and right-sensitive monitoring and evaluation
complements and builds upon the 2017 guidance document
Fast-Track and human
rights.
In doing so, it aims to support national stakeholders to assess human rights
barriers and develop, monitor and evaluate rights-based responses.
The time to act is now. The SDG monitoring framework places firm emphasis on
leaving no one behind and on capturing progress towards eliminating discrimination.
There are certain opportunities for human rights-based and rights-sensitive monitoring
and evaluation. One of them is the Global Fund commitment to scale up key
programmes to reduce and eliminate stigma and discrimination and to enhance access
to justice through all its grants. To that end, it has made catalytic funding available for
that purpose in 20 countries.
The world has committed to end AIDS, and it is working towards the vision of zero
new HIV infections, zero discrimination and zero AIDS-related deaths. If that vision is to
become a reality, monitoring efforts need to support the commitment that no one will
be left behind by the response.
37
38
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Copyright © 2019
Joint United Nations Programme on HIV/AIDS (UNAIDS)
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delimitation of its frontiers or boundaries. UNAIDS does not warrant that the information
published in this publication is complete and correct and shall not be liable for any
damages incurred as a result of its use.
UNAIDS/JC2968
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