Democratizing data is key for addressing inequalities during COVID-19

Data plays a crucial role in informing public policies and decision-making. Having representative and inclusive data is important, because it provides the foundation upon which public policies are designed, implemented, funded, and monitored. If individuals and groups are not represented in data, any decisions based on that data will not address specific issues that they face. The lack of data about already marginalized communities or populations can make it hard to reveal, and therefore dismantle, discriminatory policies and practices. Exclusion in data—which often reflects society’s values and biases about who and what counts—therefore means exclusion in reality. 

This is even more important in the current context of COVID-19, where the lack of data on specific groups, particularly marginalized ones, has resulted in serious shortfalls in the development and implementation of measures to address the needs of all. Official counting for the pandemic has rarely reflected the true impact of the pandemic on less visible groups, such as people living in informal settlements, women and girls, and migrants. 

Inclusive data is a human rights issue

Last month, a landmark decision on data inclusivity as a human rights issue came out of the Supreme Court in Mexico, in a case brought by TECHO México against the Institute for National Statistics (INEGI). This case successfully challenged the exclusion of informal settlements from Mexico’s census. In an amicus submission to the Court, a group of ESCR-Net members argued that the lack of accurate and comprehensive data over the situation of people living in informal settlements is a breach of several states’ human rights obligations—especially those that are meant to prevent and address all forms of discrimination. This must begin with identifying unequal enjoyment of human rights for all groups and invididuals. Secondly, human rights treaties mandate states to monitor the progress on realizing economic, social and cultural rights for all, which requires comprehensive data collection. Thirdly, the lack of essential data over socioeconomic conditions of different groups prevents them from meaningfully participating in policy and decision making, which is vital in any democracy. 

The amicus rested on ESCR-Net’s work in articulating a human rights-based approach (HRBA) to data through a set of principles on data and ESCR grounded in human rights obligations. On the 17th of June, Mexico’s Supreme Court unanimously ordered INEGI to collect disaggregated information about irregular or informal settlements in poverty situations citing, among other considerations, international human rights law. 

If individuals and groups are not represented in data, any decisions based on that data will not address specific issues that they face.

This landmark decision affirms the role of official data to inform policies that adequately respond to the needs of different groups. It also comes at a very significant turn for the country, as an official, publicly accessible information collection system—with updated data about access to housing and water in different areas, including informal settlements—would have made a significant difference in developing and implementing preventive measures appropriate to different needs, and strengthening the ability to respond to emergency situations, like the current pandemic. 

In the face of these gaps, civil society organizations partnered with academics to carry out a survey in the country's capital to get a picture of living conditions (including housing, access to water and basic services) and assess the effectiveness of government’s measures to tackle COVID-19. The survey results shed light on worrying trends and allowed civil society organizations to propose solutions on realizing the right to adequate housing.

Our members in other countries pointed at similar trends. In Kenya, like elsewhere, women and girls bear disproportionate impacts of the pandemic—from an increase in domestic and gender based-violence, loss of livelihood (as women are overrepresented in the informal workforce), and higher risk and exposure to the pandemic due to women comprising a bigger proportion of healthcare workers. Also, due to deep-rooted inequalities, the pandemic has curtailed access to sexual and reproductive health services for many women and girls. 

However, the government has not monitored or assessed the implications of COVID-19 on access to services by women and girls or any negative outcomes this has likely led to, such as  increases in the spread of HIV, sexually transmitted infections, unintended pregnancies and unsafe abortions. The lack of specific data has also reflected budget allocations. Estimates  for Kenya’s 2020-21 budget show that most of the healthcare allocation is for the recruitment of health workers, supply of beds, and hospital infrastructures. While laudable, these efforts should be informed by the lived experiences of people in vulnerable positions, especially women and girls who are disproportionately affected due to their sex, gender, and sexual orientation—and steer policymakers toward solutions that do not exacerbate their vulnerabilities or magnify existing inequality. 

A human rights-based approach to data can help correct imbalances in power and enable participation and inclusion of marginalised groups in decision-making.

Another example comes from the UK, which gathers mountains of data. In relation to COVID-19, the data gathered so far has helped re-affirm the serious health consequences of socio-economic inequality and racial discrimination. The Office for National Statistics found that mortality rates for COVID-19 are disproportionately high for people who are Black and Minority Ethnic as well as for those who live in the most deprived areas of England where the mortality rate was over double what it was in the least deprived areas. 

However, human rights campaigners in the UK are constantly confronting the limitations of the data and pushing for it to be expanded to include all people as well as to measure data in a more holistic way. It was only last year after intense pressure from civil society that questions on household food insecurity were included in a consistent way in a national survey. And just this month, the government conceded that they do not have estimates on the number of migrants in the UK who are affected by the No Recourse to Public Funds condition, a condition that limits a person’s access to state support, including unemployment support—meaning a great number of people with NRPF are at risk or currently live in extreme poverty.

Towards more democratic data

The pandemic highlighted the enormous costs to human rights and public policy inherent in the decision (whether intentional or not) to exclude certain groups from official counting. As demonstrated by the recent decision of the Supreme Court of Mexico, advocates can use the human rights framework to demand more inclusive and accurate data and therefore better policymaking. A human rights-based approach to data can help correct imbalances in power and enable participation and inclusion of marginalised groups in decision-making. For instance, this means that states should not only gather accurate, comprehensive and up to date data on ESCR, but also meaningfully involve communities in deciding which data should be collected to how it should be used, and pay adequate attention to data which reflects communities’ perspectives and knowledge—often neglected and deemed to be not “objective” or legitimate. 

While data alone is not enough to develop adequate policies, and many governments do not change their course even when faced with strong evidence, nonetheless it provides a tool for domestic campaigners to help advocate for better policy decisions.

We hope that our set of principles on data and ESCR will help civil society organizations advocate for data that reflects people’s lived experiences and foregrounds human rights, and in so doing enables more democratic decision-making. 

If you’re interested in hearing more, participate in our upcoming discussion on Democratizing data at Rights Con on Friday 31st July at 10 AM EST.