POLICY & PRACTICE
Using indicators to determine the contribution of human rights to public health efforts
Utilisation d'indicateurs pour déterminer la contribution des droits de l'homme aux efforts en faveur de la santé publique
Uso de indicadores para determinar la contribución de los derechos humanos a los esfuerzos de salud pública
Sofia Gruskin*; Laura Ferguson
Program on International Health and Human Rights, Harvard School of Public Health, 677 Huntington Avenue, Boston, MA, 02115, United States of America
ABSTRACT
There is general agreement on the need to integrate human rights into health policies and programmes, although there is still reluctance to go beyond rhetorical acknowledgement of their assumed significance. To determine the actual value of human rights for the effectiveness of public health efforts requires clarity about what their incorporation looks like in practice and how to assess their contribution. Despite the pervasive use of indicators in the public health field, indicators that specifically capture human rights concerns are not well developed and those that exist are inconsistently used. Even though "health and human rights indicators" are increasingly being constructed, it is often the case that health indicators are used to draw conclusions about some interaction between human rights and health; or that law and policy or other indicators, traditionally the domain of the human rights community, are used to make conclusions about health outcomes. To capture the added value that human rights bring to health, the differences in the contributions offered by these indicators need to be understood. To determine the value of different measures for advancing programme effectiveness, improving health outcomes and promoting human rights, requires questioning the intended purpose behind the construction of an indicator, who uses it, the kind of indicator it is, the extent to which it provides information about vulnerable populations, as well as how the data are collected and used.
RÉSUMÉ
Il existe un consensus sur la nécessité d'intégrer les droits de l'homme aux politiques et aux programmes sanitaires, malgré une certaine réticence à aller au-delà de la reconnaissance rhétorique de leur importance supposée. Pour déterminer ce qu'apportent réellement les droits de l'homme à l'efficacité des efforts en faveur de la santé publique, il faut avoir une idée claire de la forme que prend leur intégration dans la pratique et des modalités d'évaluation de leur contribution. En dépit de l'usage envahissant des indicateurs dans le domaine de la santé publique, on ne dispose pas encore d'indicateur bien au point qui rende compte spécifiquement des préoccupations liées aux des droits de l'homme et les indicateurs existants ne sont pas utilisés de manière systématique. Si l'on construit de plus en plus d'indicateurs du type « santé et droits de l'homme », il est fréquent que ces indicateurs soient utilisés pour tirer des conclusions sur certaines interactions entre les doits de l'homme et la santé ou que des indicateurs du type « loi et politique » ou autres, relevant traditionnellement du domaine des droits de l'homme, servent à formuler des conclusions sur des résultats sanitaires. Pour rendre compte de la valeur ajoutée que les droits de l'homme apportent à la santé, il faut comprendre les différences entre les contributions représentées par ces indicateurs. Pour déterminer la valeur de différentes mesures de la progression de l'efficacité programmatique, de l'amélioration des résultats sanitaires et de la promotion des droits de l'homme, il faut se poser les questions suivantes: quelle est la finalité visée dans la construction de l'indicateur considéré ? Quels sont ses utilisateurs ? De quelle nature est-il ? Dans quelle mesure fournit-il des informations sur les populations vulnérables ? et comment les données sont-elles recueillies et exploitées ?
RESUMEN
Se reconoce en general que es necesario integrar los derechos humanos en las políticas y los programas de salud, pero hay aún cierta resistencia a ir más allá del reconocimiento retórico de esa necesidad. Si se quiere determinar el impacto real de los derechos humanos en la eficacia de las iniciativas de salud pública, es preciso conocer con claridad cómo se manifiesta en la práctica su incorporación a esos esfuerzos y cómo debe evaluarse su contribución a los mismos. Aunque el uso de indicadores está muy extendido en el campo de la salud pública, los indicadores concebidos para reflejar aspectos de los derechos humanos no están bien desarrollados o se usan de manera incoherente. Si bien se están elaborando cada vez más «indicadores de salud y derechos humanos», ocurre a menudo que los indicadores sanitarios se utilizan para extraer conclusiones sobre algún tipo de interacción entre los derechos humanos y la salud; o que indicadores relacionados con la legislación y las políticas, tradicionalmente empleados por la comunidad de derechos humanos, son utilizados para sacar conclusiones sobre los resultados sanitarios. A fin de calibrar el valor añadido que los derechos humanos suponen para la salud, es preciso entender bien la diferente contribución de esos indicadores. Para determinar el valor de las distintas medidas empleadas en lo que atañe a imprimir eficacia a los programas, mejorar los resultados sanitarios y promover los derechos humanos, hay que preguntarse cuál fue la finalidad perseguida al elaborar el indicador, quiénes lo emplean, qué tipo de indicador es, en qué medida aporta información sobre las poblaciones vulnerables, y de qué manera se recogen y usan los datos.
Introduction
Despite increasing attention paid to the apparent integration of human rights into public health policies and programmes, it is difficult to find concrete examples of the benefits that have been derived from linking human rights norms and standards to public health imperatives. There is a need to identify existing approaches that link human rights and health concerns and then to determine the best ways to assess their impact on the effectiveness and outcomes of health policies and programmes. As basic as it sounds, this approach requires clarity, not only in defining human rights, but also in recognizing what incorporation of identified norms and standards should look like in practice.
In the interests of validity and comparability, from a public health perspective, assessment requires appropriate quantitative indicators. Implicit in the use of such indicators is a sense that they are both impartial and objective. Yet a human rights perspective suggests querying the assumed neutrality of an indicator: we should think about who uses it, for what purposes and in what ways. What occurs before, during and after the measurement process itself is equally important as what is being measured. Thus, the purpose of this paper is to begin to disentangle the diversity of approaches to health and human rights indicators and to suggest issues to consider in determining the value of existing approaches.
Human rights and public health practice
Human rights bring into focus the relationship between the government, which is the first-line provider and protector of human rights, and individuals (who hold these rights as human beings).1 Every country in the world is party to at least one human rights treaty and all have made rights-related commitments relevant to health.2 While for many years it was unclear what the incorporation of human rights principles meant for public health practice, certain actions are increasingly considered part of a human rights-based approach to health (Box 1).
Although generally not incorporated so systematically, many of the interventions implied by the actions named in Box 1 are familiar to people involved in public health. Those that are not so familiar, such as ensuring transparency for how decisions are made, are unique contributions that the human rights field offers to public health. A difficulty lies in determining whether, by drawing attention to the human rights aspects of those actions traditionally in the domain of public health, the nature of the indicator appropriate for their measurement should remain the same or change. Additionally, the fact that institutions may engage differently with the same concepts and even the same indicators has implications for assessing the ways in which monitoring and evaluation are done across the fields of health and human rights.
Indicators
A wide range of actors use indicators to capture human rights concerns relating to health including international and national human rights mechanisms, governments, health and development organizations and civil society.
In general terms, an indicator is "a variable with characteristics of quality, quantity and time used to measure, directly or indirectly, changes in a situation and to appreciate the progress made in addressing it".4Table 1 lays out definitions and examples of the two types of indicators used to capture health and human rights concerns.
It is immediately apparent that many of the human rights indicators constitute measures that fall outside the traditional definition of a health indicator. To assess the degree to which human rights are respected, protected and fulfilled in the area of health is to expand the notion of what constitutes an indicator in this field. Inevitably this brings with it complications, some of which are explored in this paper.
Human rights indicators to measure health
For those involved in monitoring the human rights compliance of States, indicators are primarily used to enhance the practice of accountability for health-related rights issues. In this context, interest in health arises primarily from its relevance to a range of rights, in particular when non-fulfilment of health-related rights is thought to impede fulfilment of a range of human rights. For example, human rights organizations may quantify violations in specific areas to highlight governmental failure to protect human rights relevant to health, e.g. sexual violence in conflict situations.8 Further, some treaty monitoring bodies ask governments to show the kind of legislation that exists to protect population groups from discrimination in their access to health care,9 while others ask for such information as disaggregation by ethnicity of the reported number of births attended by skilled health personnel.10
Attention to the use of such human rights indicators by actors in the health arena is rapidly increasing. To ensure a shared understanding of why and how they are being used, as well as transparency, it is important to make explicit the justification for the assumption that these indicators are grounded in international human rights law and they are linked to the field of health. Highlighting the legal bases from which such indicators are derived can also help to minimize bias in how they are used.
Health indicators to measure human rights
Within the human rights field, compliance with human rights norms and standards and assessment of government accountability is often done through use of "traditional" health indicators. An example is infant mortality rates, which are used as a measure of State Party compliance with their obligation to respect the child's right to life, survival and development, even though they were created as an indicator of population health.10
For those involved in health, the fact that health indicators draw attention to rights issues is generally a by-product of efforts to determine the appropriateness and effectiveness of policies and programmes. As one example, disaggregation of data on the basis of sex and age may be used to gauge usage of available health services,11 but may also draw attention to larger underlying concerns related to inequities in access. In other instances, attention to human rights may be driven by a genuine, but nebulous, desire to "do good" and thus give insufficient attention to why a particular health indicator, or set of indicators, is assumed to measure human rights.
Even as indicators are frequently used for purposes beyond those for which they were originally intended, it is useful to consider whether health indicators ostensibly used to measure human rights would have been constructed differently if human rights considerations had formed part of their design, and also to consider the criteria that are or should be used to determine how health indicators are linked to specific human rights for valid inferences to be made.
Indicators of health and human rights
With regard to the capture of information at the intersection of health and human rights, increasingly a third category of indicators exists - those created in the health field to capture information specifically relating to human rights issues in the design and delivery of health policies and programmes.12-15 This can most plainly be seen in relation to the components noted previously as key aspects of a human rights approach. Some examples follow.
Assessment of laws that may present obstacles to effective HIV prevention and care for vulnerable populations provide a useful example of an indicator that brings to light issues equally of interest to both fields.16 Laws that criminalize injecting drug use, sex work or consensual sex between men may deter people who engage in these behaviours from seeking HIV-related services even if they are available. Knowledge of the existence of such laws provides context within which the public health community can plan and implement programmatic activities, and can help the human rights community to inform advocacy and push for any legal reform necessary. These indicators could be improved by capturing not simply the existence of a law but also its quality, as well as the degree to which it is implemented.
Indicators relating to the participation of vulnerable groups bring several concerns relevant for both health and rights. For example, the Greater Involvement of People Living with or Affected by HIV/AIDS (GIPA) principle draws its strength and legal grounding in the right to participation and has also been recognized as critical to effective HIV programming.17 It is crucial that appropriate participation be sought from affected communities to ensure the acceptability of interventions to the population for whom they are intended. Additional thought is required on the way to determine in each instance which populations are considered vulnerable. This determines not only whose participation is solicited and measured, but also which populations are acknowledged to exist.
Linguistic challenges
Semantics pose challenges as there are differences in understanding across the fields even when using the same terminology. For example, stigma and discrimination have precise definitions such that, in relation to health, "stigma" means being devalued by individuals or communities on the basis of real or perceived health status. "Discrimination" refers to the legal, institutional and procedural ways that people are denied access to their rights because of their real or perceived health status.18,19 In public health, these terms are increasingly used but often without distinction. For example, several instruments ostensibly assess both stigma and discrimination within the context of HIV/AIDS.20-23 While presumably excellent for their own purposes, most mix the definitions and concepts of stigma and discrimination, thereby detracting from the ultimate utility of the data from a human rights perspective for both advocacy and accountability purposes.
Along similar lines, in 2003 the United Nations Special Rapporteur on the Right to Health suggested that the categories of structural, process and outcome indicators be introduced into the monitoring of health-related human rights,24 and the validity of this approach for a wide range of rights is increasingly under discussion in the human rights community.6 While, to those working in the health field, this would seem to be a familiar delineation of indicators and an important step in bringing together the human rights and health fields, the differences in how these categories are defined is worthy of note. In human rights terms, "structural indicators" capture the existence of laws, policies and regulations considered key to the functioning of health systems24 as opposed to variables reflecting the system in which care is delivered.25 "Process indicators" are defined as measuring "programmes, activities and interventions",24 which is different from the traditional public health definition of measuring the mechanisms through which interventions have an impact.25 The fields more or less come together in their definition of "outcome indicators", which aim to capture the impact of programmes, activities and interventions on health.24,25
Thus even when the same terminology is used, unless recognized and addressed, definitional differences between the health and human rights fields can lead to confusion and limitations in the presentation and use of the information collected.
Using existing indicators
It is clearly preferable to first determine the concept that is to be assessed and then find an appropriate measure. However, given the veritable plethora of indicators already in existence, one should look at how existing indicators can be better understood and used to capture issues relevant to both health and human rights before giving consideration to the creation of any new indicators. For an indicator to be valid from both a health and human rights perspective, irrespective of why it was initially constructed, it is essential to determine the extent of its human rights sensitivity and its validity in public health terms. We propose a series of questions to help guide determination of the health and human rights appropriateness of any given indicator.
Why was it designed?
The design of every indicator is influenced by the priorities shaping its use. An indicator will look quite different if its intended purpose is to inform strategy and programme development as opposed to monitoring targets and holding specific actors accountable. While in the end the issues of concern may be similar, decisions relating to such issues as specificity, comparability and cost will, to a large extent, be determined by the intended purpose of the indicator as well the interests of the entity funding its construction. Careful consideration and due attention to transparency are obviously required as to whose values are incorporated and the extent to which the indicator was designed with both health and human rights concerns in mind.
Who is using it?
Beyond the question of whether an organization's primary area of focus is health, human rights or both, the use of an indicator is likely to look different in the hands of a nongovernmental organization, a donor, a national government institution or an international organization. If the indicator is designed by one actor but used by others, it is unclear the extent to which all actors need to be aware of its original purpose in order for their efforts, including the interpretation and use of any data, to be valid.
What kind of indicator?
Within the public health community, statistical significance achieved through use of quantitative indicators has long been seen as the gold standard for research and evaluation.26 Attention to human rights concerns sheds light on the inadequacy of quantitative indicators alone for fully understanding and addressing a situation. Likewise, surveys of client perceptions of the availability, accessibility, acceptability and quality of health services (key aspects of the right to health) are useful for raising human rights concerns, but they too are inadequate in painting a full picture. In an ideal world, not only would indicators be constructed to take into account both health and human rights considerations, but quantitative and qualitative indicators would be considered together to allow for interventions shaped by a more complete picture of the issues at hand.
Does it provide information on vulnerable populations?
Disaggregation of information to reflect where the needs are most acute is undisputed. The question ultimately boils down to what disaggregation criteria are applied and in response to whose demand. In light of the acknowledged importance of nondiscrimination and the recognized need for appropriately targeted interventions, at first glance it is problematic that most indicators do not capture information about specific population subgroups. An inherent tension between public health and human rights concerns surfaces here. Statistical validity requires carefully planned sampling strategies, which become increasingly costly, time-consuming and complicated as categories of disaggregation are added. Conversely, attention to human rights concerns would seem to suggest that disaggregation needs to go beyond sex and geographical location to include such factors as race, language, sexual orientation, and civil, political, social or other status.27 Determining the appropriate level of disaggregation for any given setting requires conscious attention to both public health and human rights considerations to ensure the situation of vulnerable populations with respect to specific health issues is appropriately addressed without inadvertent exacerbation of discrimination.
How are data collected?
The public health community's interest in the process of collecting data is to a large extent centred around determining ways to ensure reported results are valid,28 whereas a human rights perspective is concerned with the processes of why and how data are collected. Egregious examples within the public health field, such as Nazi human experimentation29 and the Tuskegee Syphilis Study,30 have drawn attention to ethical concerns but a human rights perspective highlights the responsibility of the researcher, policy-maker and health programmer to know the source of data in all instances. This helps to ensure not only that efforts are appropriately informed but also, if necessary, that data collection efforts be amended to ensure human rights violations do not inadvertently occur in the process.
How are data used?
Once data are collected, there are issues to consider with respect to whether the information is made publicly available, released to the affected community with proper education or only known to a small subset of actors; concerns may exist in each of these scenarios. Transparency in how this decision is reached will help ensure legitimacy and accountability for any problems that may occur from subsequent use of the data. Attention to human rights considerations can also make an important contribution to the use of purportedly neutral health data and help to ensure these data do not end up unintentionally fostering stigma, discrimination or further violations of human rights. Table 2 draws on examples from HIV to highlight the sorts of issues raised by previous questions.
Conclusion
Different types of indicators capture different sorts of data through diverse mechanisms. Consequently, effective assessment of health and human rights concerns may require innovative application of proven monitoring and evaluation methodologies, such as triangulation across different data sources. Such an approach would promote pioneering use of existing indicators thereby maximizing the potential use of existing data without further burdening monitoring and evaluation systems with new indicators.
The value of what can genuinely be called health and human rights indicators is not only to show progress, disparities and gaps within countries and globally: the process of measurement matters as much as the data themselves. Health and human rights indicators can show the extent to which governments and other entities are meeting their health-related human rights obligations, highlight areas where further efforts might lead to increased fulfilment of these obligations and, by extension, improve health outcomes. Drawing attention to all elements of a rights-based approach, indicators which genuinely capture both sets of concerns will ultimately help to determine whether policies and programmes that are the most effective in health terms are also those that have achieved the greatest level of compliance with human rights principles. Even as clarifying these links is important, all of this will remain purely academic unless the data are used to improve support for affected communities. Although still young and fairly amorphous, the potential of health and human rights indicators for informing evidence-based policies and programmes underscores the need for their further development. 
Competing interests: None declared.
References
1. Clapham A. Human rights: a very short introduction. Oxford: Oxford University Press; 2007.
2. United Nations Treaty Collection [Internet site]. Geneva: United Nations; 2009. Available from: http://www2.ohchr.org/english/bodies/ratification/index.htm [accessed on 3 July 2009] .
3. Gruskin S, Tarantola D. Universal access to HIV prevention, treatment and care: assessing the inclusion of human rights in international and national strategic plans. AIDS 2008;22 Suppl 2;S123-32. doi:10.1097/01. aids.0000327444.51408.21 PMID:18641464
4. Management effectiveness programme. In: Health systems: concepts, design & performance. Cairo: World Health Organization Regional Office for the Eastern Mediterranean; 2004. Available from: http://www.emro.who.int/mei/mep/Healthsystemsglossary.htm [accessed on 3 July 2009] .
5. Health systems performance glossary. Geneva: World Health Organization; 2000. Available from: http://www.who.int/health-systems-performance/docs/glossary.htm [accessed on 3 Jul 2009] .
6. Malhotra R, Fasel N. Quantitative Human Rights Indicators: a survey of major initiatives. In: Expert Meeting on Human Rights Indicators, Abo Akedemi University, Turku, Finland, 10-13 March 2005.
7. Landman T. Measuring human rights: principle, practice and policy. Hum Rights Q 2004;26:906-31. doi:10.1353/hrq.2004.0049
8. Five years on: no justice for sexual violence in Darfur. New York, NY: Human Rights Watch; 2008. Available from: http://www.hrw.org/sites/default/files/reports/darfur0408_1.pdf [accessed on 3 July 2009] .
9. International Convention on the Elimination of All Forms of Racial Discrimination, Article 5 paragraph e (iv). Geneva: Office of the United Nations High Commissioner for Human Rights. Available from: http://www2.ohchr.org/english/law/cerd.htm [accessed on 3 July 2009] .
10. Committee on the Rights of the Child. General guidelines regarding the form and content of initial reports to be submitted by States Parties under article 44, paragraph 1(a), of the Convention [CRC/C/5]. Geneva: Office of the United Nations High Commissioner for Human Rights;1991. Available from: http://www.unhchr.ch/tbs/doc.nsf/(Symbol)/CRC.C.5.En?Opendocument [accessed on 3 July 2009] .
11. Reproductive health indicators for global monitoring [Report of the second inter-agency meeting, WHO/RHR/01.19]. Geneva: World Health Organization; 2000. Available from: http://who.int/reproductive-health/publications/rhr_01_19/index.htm [accessed on 3 July 2009] .
12. Hunt P. Human right to the highest attainable standard of health: new opportunities and challenges. Trans R Soc Trop Med Hyg 2006;100:603-7. doi:10.1016/j.trstmh.2006.03.001 PMID:16650880
13. Green M. What we talk about when we talk about indicators: current approaches to human rights measurement. Hum Rights Q 2001;23:1063-97.
14. Report of Turku expert meeting on human rights indicators. In: Expert Meeting on Human Rights Indicators, Abo Akedemi University, Turku, Finland, 10-13 March 2005. Available from: web.abo.fi/instut/imr/research/seminars/indicators/Report.doc [accessed on 3 July 2009] .
15. Raworth K. Measuring human rights. In: Gruskin S, Grodin MA, Annas GJ, Marks SP. Perspectives on health and human rights. New York, NY: Routledge; 2005.
16. Monitoring the Declaration of Commitment on HIV/AIDS: guidelines on construction of core indicators reporting. Geneva: Joint United Nations Programme on HIV/AIDS (UNAIDS); 2008. Available from: http://data.unaids.org/pub/Manual/2007/20070411_ungass_core_indicators_manual_en.pdf [accessed on 3 July 2009] .
17. The Paris Declaration. In: Paris AIDS Summit, Paris, 1 December 1994. Available from: http://www.unaids.org/unaids_resources/images/Partnerships/The%20Paris%20Declaration.pdf [accessed on 3 July 2009] .
18. Definition of "stigma", no. 2. The Oxford English Dictionary. 2nd edition. Oxford: Oxford University Press; 1989. Available from: http://www.oed.com/ [accessed on 3 July 2009] .
19. Definition of "discrimination", no.1. The Oxford English Dictionary. 2nd edition. Oxford: Oxford University Press; 1989. Available from: http://www.oed.com/ [accessed on 3 July 2009] .
20. UNAIDS General Population Survey. Geneva: UNAIDS; 2000. Available from: http://www.cpc.unc.edu/measure/publications/unaids-00.17e/tools/unaidspopulation.html [accessed 3 July 2009] .
21. Demographic and Health Survey AIDS Module. Calverton, MD: ORC Macro;2000. Available from: http://www.emro.who.int/gfatm/guide/tools/dhsaids/dhsaids.html [accessed on 3 July 2009] .
22. Behavioral Surveillance Surveys. Adult and youth modules. Research Triangle Park, NC: Family Health International;2009. Available from: http://www.fhi.org/en/topics/bss [accessed on 3 July 2009] .
23. Multiple Indicator Cluster Survey (MICS). New York, NY: UNICEF; 2009. Available from: www.unicef.org/statistics/index_24302.html [accessed on 3 July 2009] .
24. Right of everyone to enjoy the highest attainable standard of physical and mental health [Interim report of the Special Rapporteur of the Commission on Human Rights, agenda item 117 (c)]. In: United Nations 58th session of the General Assembly, Geneva, 2003. Available from: http://www.unhchr.ch/Huridocda/Huridoca.nsf/0/306eaaf7b4938ba9c1256dd70051435d/$FILE/N0356469.pdf [accessed on 3 July 2009] .
25. Donabedian A. Evaluating the quality of medical care. Milbank Mem Fund Q 1966;44:166-206. doi:10.2307/3348969 PMID:5338568
26. Baum F. Researching public health: behind the qualitative-quantitative methodological debate. Soc Sci Med 1995;40:459-68. PMID:7725120 doi:10.1016/0277-9536(94)E0103-Y
27. General comment 14 on the right to the highest attainable standard of health [E/C.12/2000/4]. In: United Nations Committee on Economic, Social and Cultural Rights, Geneva, 20 May 2000.
28. Shadish WR, Cook TD, Campbell DT. Experimental and quasi-experimental designs for generalized causal inference. Boston, MA: Houghton Mifflin; 2002.
29. Annas GJ, Grodin MA. The Nazi doctors and the Nuremberg Code. New York, NY: University Press; 1992.
30. Brandt AM. Racism and research: the case of the Tuskegee syphilis study. Hastings Cent Rep 1978;8:21-9. PMID:721302 doi:10.2307/3561468
31. De Lay P, Manda V. Politics of monitoring and evaluation: lessons from the AIDS epidemic. N Dir Eval 2004;2004:13-31. doi:10.1002/ev.120
(Submitted: 5 September 2008 - Revised version received: 3 January 2009 - Accepted: 4 January 2009 - Published online: 7 July 2009)
* Correspondence to Sofia Gruskin (e-mail: sgruskin@hsph.harvard.edu).