In digital transformation, the devil is in the data

Living through COVID-19 focused political minds on the urgency of digital transformation. We all saw how countries that had previously invested in digital infrastructure such as identification or payment systems were able to respond to the crisis quickly and effectively by leveraging these systems for cash transfers, vaccine roll-out, and other relief efforts. The urgency of the moment drove innovations that paved the way for longer term improvements in the speed, reach, and targeting of public services through digital investments.

This is one of the key issues that emerged during a meeting in Bali last week of the world’s richest countries. G20 leaders formally recognized that digital investments are a critical part of the infrastructure of modern administrations, and they committed to advancing “more inclusive, human-centric, empowering, and sustainable digital transformation.” 

During the event, the United Nations Secretary-General called on all countries to support a Global Digital Compact to promote an “open, free, inclusive, and secure digital future for all,” to be agreed upon in 2024. 

This is a goal that everyone should support. But making digital economies work for everyone is a complex challenge rooted in how the data that is produced and used by these systems is managed and governed. Without the capacity and resources to make the most of data produced by digital systems, governments will fail to harness their full potential, leaving many people behind. In other words, in seeking to make the most of digital transformation, the devil is in the data. 

Locating data in digital systems

Digital tools and systems run on data. Their power to transform relies on their ability to collate, analyze, and use vast amounts of data for new insights, smoother processes, and targeted action. 

Countries like Togo are reaping the benefits of a digital system that runs on data. In the early days of the COVID-19 pandemic, the Government of Togo worked with three organizations to deliver cash transfers to 138,000 people living in poverty. These partners brought together satellite data and phone records to identify the neediest populations. People were then invited to opt in using their identification number, and they received the transfer directly to their mobile phones. Integral to the system, called MobileAid, was having a national identity system that covered 93 percent of adults in the country and provided a usable population registry. Unlike in the United States, where citizens waited months for the government to deliver paper checks often against outdated address information, Togo’s data-enabled digital system delivered relief quickly and efficiently.

Like MobileAid, many of the most transformative digital reforms are built on investments in digital public infrastructure. Like roads and bridges but online, digital public infrastructure creates the technology foundations for digital transformation at societal scale. Common examples of digital public infrastructure include identity systems, payment systems, and sector information systems like DHIS2 in health. 

The databases that underpin digital public infrastructure often hold personal and sensitive information, including names, addresses, identification numbers, health and wellness information, bank details, transaction records, and, in many places, biometric data like fingerprints and pictures. Questions around who has access to this data, whether it can be shared, and how it can be used are fundamental to protecting people’s rights and determining who benefits from the data. 

For example, should governments be allowed to share your health records with banks or insurance companies to evaluate your creditworthiness or insurability? Should a police service be able to find out if you’re HIV positive or if you have had an abortion? What if the political party in power uses financial transaction records to discredit its opponents?

Centering the role of data by examining how it is produced, managed, and used by digital systems—and how this impacts on people—helps to ensure that digital transformation leads to more equitable outcomes and not just greater efficiency.

Building trustworthy digital systems 

It’s easy to get carried away with the promise of new technology, and for governments and donors to focus on building shiny new things. Often this is exactly what the world needs, but without establishing public trust in these new systems through effective data governance, the shiny new technology risks underperforming or even causing harm. 

Controversies surrounding digital identity systems that collect biometric data highlight these risks. While India’s Aadhaar system has been heralded as improving the delivery of social welfare benefits and reducing corruption and waste, widespread reports have identified poor handling of data and inadequate safeguards. This has resulted in serious data breaches and caused a vast amount of people’s personal data to be exposed and used to exclude marginalized groups from services. Similar concerns arose in Kenya when the government began to roll-out the Huduma Namba. In both cases, legal challenges resulted in the countries’ top courts halting the ID system roll-outs until adequate data protection legislation and other safeguards were put in place. 

What digital ID, payment systems, and sectoral information management systems have in common is the vast amounts of personal and often sensitive data they collect and hold in large databases. The greatest potential for improved service delivery and decision-making comes from linking and mining these databases. Critics have argued that this creates a gateway to surveillance—by both the state and the corporations that are subcontracted to run these systems—and loss of individual autonomy. But it doesn’t have to be that way. How the data produced and used by these systems is governed determines whether, on balance, they provide more help or harm. 

Legislation, institutions, and other formal mechanisms of data governance provide critical guardrails as we’ve seen in India and Kenya. Also important are civil society watchdogs and citizens groups that can question digital investments and interrogate whether the safeguards are robust enough. Data governance mechanisms also need to give affected people and communities opportunities to weigh in on how their data will be collected and used by digital systems. Expanding participation in data governance has been shown to promote greater accountability and transparency, create checks and balances, and lead to more trustworthy and equitable digital systems.

Maximizing the potential of digital transformation 

Leveraging the full power of digital transformation, and doing so in a way that commands public support, requires that governments have the institutions, skills, and infrastructure to store, process, analyze, govern, and use the data they produce. As the World Bank argues, this requires integrated national data systems that can set and maintain data quality standards, conduct routine data collection and analysis, store and manage that data effectively, bring together traditional and new data sources, and govern data in a responsible manner. 

Many countries lack these basic capacities. For example, two thirds of low- and middle income countries lack sufficient resources to meet the demands for data created by the COVID-19 pandemic. There are only six out of the 17 SDGs for which more than two thirds of countries have data to report. In our work at the Global Partnership, we find that colleagues from National Statistical Offices are eager to leverage new data and technology but often lack the infrastructure and human resources in data science, geospatial data processing, and data management and governance to take full advantage of digitization.

Despite these persistent challenges, investments in data and statistical systems in low- and middle-income countries have stagnated in the last decade, hovering around $450-650 million and now representing a meager 0.3 percent of Official Development Assistance (ODA). This is a shame because, at just $700 million, the funding gap is not actually very large, and these investments lead to significant returns. 

Investing in data systems is spending to save. A recent study by Dalberg Development Advisors for the Data with Purpose campaign calculates that every dollar invested in foundational data systems produces an average return of $32. More effective data systems improve decision making, create efficiencies through better targeted services, and generate more equitable outcomes. Strengthening legal frameworks, institutions, and processes of data governance will contribute to more inclusive, empowering, and trustworthy environments for digital transformation.

The Dalberg study advocates for all bilateral and philanthropic donors to allocate a minimum of 0.8 percent of annual ODA investment to data systems. Allocating less than one percent of the hundreds of millions of dollars poured each year into digital transformation seems like a small price to build firm data foundations for digital systems, particularly since these systems can’t run without the data.

Looking to the future

Building effective and trustworthy data systems to underpin digital transformation requires a foundation of shared values and reliable investment. Together with a growing movement of partners, the Global Partnership launched the #DataValues Manifesto and kicked off the Data Values campaign in September. The Manifesto envisions a fairer data future and provides a five-point plan to get there. It is both the culmination of a year-long consultation with more than 350 people from over 60 countries and also a starting point for advocacy and action on #DataValues. The Manifesto and accompanying white paper offer ideas and examples to shape data governance and center data values in digital transformation. In the coming year, we’ll be working with partners to promote the Data Values agenda and we’ll be supporting and learning from their efforts to take action on the Manifesto messages. 

We are also proud to be a part of the Data with Purpose campaign, which just launched the Dalberg report and has seen numerous influential political and corporate leaders speak about the importance of investing in data. We are committed to building support for the allocation of 0.8 percent of donor investment to data systems, investments that are fundamental for all countries to realize the full promise of digital transformation.

We’re looking forward to the development of a Global Digital Compact at the UN over the next two years. This process sits within the broader context of work across the UN System to implement the SG’s Data Strategy and to promote rights-respecting digital systems. The UN Technology Envoy is currently running an open consultation to hear from all stakeholders on their priorities for the Compact. We will be working with partners to ensure the Compact puts data values and data investment at the center, and encourage all stakeholders to share their views. 

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Do you have time to answer the same questions again?

This blog post is re-posted with permission from the Data Values Digest

“Aap log kal hi to aye the na sawal jawab ke liye?” Laxmi* said when I asked whether she would participate in a survey. “Didn’t you just come yesterday for the interview?” 

“No, that wasn’t us,” I replied. Laxmi was one of our sampled respondents for a quantitative baseline survey in 2016 in the Madhya Pradesh state of India for an academic research project on women’s political and social empowerment. 

The day before I arrived, Laxmi had been interviewed by a different organization asking similar questions. This is a common occurrence in rural villages in India where household members—and especially women—are interview subjects of academic and private research groups, government, and non-governmental organizations.

According to governmental policy think tank NITI Aayog, there are 81 All India Surveys (nation-wide surveys on all topics), 70 percent percent of which were or continue to be conducted by government agencies. Ten surveys are collected annually. Of these, four cover topics related to demography and health. This list, which was published in mid-2021, does not account for surveys conducted by academic or private research organizations.

An employee of PRADAN, a non-governmental organization based in India, told me in a phone conversation last month that he estimated at least ten surveys are conducted in any rural village in India every year.

Most of these surveys share the same questionnaire or similar parts of a questionnaire such as the frequently-used Demographic and Health Survey’s section on women’s empowerment. PRADAN conducts a women’s empowerment survey in the villages where they work at least once a year. As a research associate with J-PAL South Asia between 2016 and 2018, I conducted surveys with empowerment questions twice in 2016 and once in 2017. These surveys are on average 45-60 mins long. 

The burden of answering survey questions doesn’t fall equally on members of a household. In about 80 percent of household surveys, the respondents are women. For example, in the National Family and Health Survey conducted between 2020 and 2021, 724,115 (88 percent) women were surveyed compared to 101,839 men (12 percent).

Surveys are extremely important. They provide representative facts, views, and opinions and help shape policy based on the needs of individuals and communities. However, there are certain problems with conducting repeated large-scale surveys in the same communities with the same individuals, especially for women. 

The problems with repeatedly surveying the same people

Firstly, this practice shows that surveying organizations place extraordinarily little value on the time of women who are already burdened with household chores, agricultural and farm work, and childcare responsibilities. Of course, consent is obtained before each survey. However, research shows that women—especially those in patriarchal and rural areas—have a tough time saying “no,” especially to an outsider who represents a figure of authority. Time spent responding to surveys is not spent on fulfilling her duties as a mother, daughter-in-law, and wife and can lead to backlash in the form of verbal and physical abuse. 

Secondly, direct benefits of these surveys to the respondents are often either non-existent or hard to quantify. Sometimes individuals are offered payment for their time, but this doesn’t necessarily address the problems that the survey has identified. Even when there is a long-term benefit to a community, research takes years to publish and policies require time to take effect. Meanwhile, a woman who is asked the same “time-use” questions again and again still spends the same amount of time doing the same chores that are considered to be a woman’s responsibility.

The third issue with repeated surveys is the risk of response bias. Response bias refers to the ways respondents may be unduly influenced when providing answers on a survey. This can lead to survey errors causing serious threats to the internal validity of the data and any research published using these data. “Oh, I know the answer to that question,” Rani* grinned when I asked how often she went to the panchayat (village council) meeting. “People like you asked me the same questions a few months ago.”

The dilemma at the heart of this problem

There are two important reasons why the same questions are asked repeatedly by different organizations. First, even though most journals and funders require manuscript authors to share their data, most do not do so for various reasons. The lack of open data sharing is a major cause of repeated information gathering. 

Secondly, organizations that share data are held to extremely high standards of maintaining confidentiality by Institutional Review Boards (commonly known as IRBs). To maintain privacy of individuals, these organizations publish data removing any sort of information that would reveal the personal identity of the interviewee. If another organization needs data with some personal identifiers for any reason such as merging two datasets or identifying areas where policies were enacted, the only option is conduct their own survey research and own the new dataset. Hence, they must embark on another data gathering expedition. 

This creates a huge dilemma between valuing time or valuing privacy! Is there a solution that can find a balance between valuing both?

What can be done?

Better collaboration is key to addressing this problem. Surveying organizations are usually hired to conduct surveys and may not have capacity or authority to coordinate with other organizations. While there are opportunities to collaborate among agencies which hire these organizations (and indeed a UN agency exists to address this), one of the most efficient and feasible solutions (and one which is already in place albeit more in paper than in action) is data sharing or open data.

Where personally identifiable information is not required, manuscript authors, researchers, government, and non-governmental organizations are frequently required to publicly share their data. In most cases, they are required to make the data available on request or share it on repositories. If the dataset is not publicly available or authors do not share the data on request, as happens in many instances, serious actions should be taken against them. The process of data compiling, sharing, and accessibility should be streamlined. This will go a long way in reducing repeated information gathering. 

Another possible solution could be to create independent entities at the local level to keep an inventory of any survey done in any village in the area. Let us, for example, assume that villages A, B, C, D are under the purview of local entity X. If an organization wants to conduct a survey in villages A and B, it would have to register the survey with all the details about the type of survey with X. With this system in place, if another survey organization wanted to conduct a similar survey in A, then X can ask them to contact the first organization to see if they could come to a data sharing agreement. If data sharing is not possible due to any reason, X can ask them to conduct surveys in areas C or D to avoid repeatedly surveying the same areas.

While maintaining privacy has been an important goal in the field of data collection up to this point, valuing respondent’s time has not. If we want to empower individual respondents and make policies to benefit them through collecting data from them, it is our responsibility as data collectors to respect respondents’ time. Otherwise, can we really claim we are doing the right, fair, and equitable thing?

 

 

*Names have been changed to maintain the privacy of respondents.

Jasleen Kaur is a PhD Candidate at the LBJ School of Public Affairs and a Population Research trainee at the University of Texas at Austin. Her research aims to improve the social, economic, and political status of women. She focuses on the "implementation science" of policies and programs meant to empower women. Kaur has previously worked with J-PAL South Asia and Sanford School of Public Policy at Duke University, where she was involved with hands-on monitoring and evaluation of gender livelihood and maternal health projects respectively. Follow her on Twitter and Linkedin or send her an email.

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The author in conversation with a teacher in Lucknow, India. Credit: Jasleen Kaur
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Data Values: Act now to create a fair data future for all

Today we’re excited to launch a new agenda for how data is collected, managed, funded, and used with the aim of helping and empowering people instead of harming or excluding them. As rapid shifts in technology and data reshape our organizations, societies, and lives, the #DataValues Manifesto is calling for urgent action to create a fair data future for all.

The Manifesto calls for organizations, governments, and people to act now and together to create this change by: 

  1. Supporting people to shape how they’re represented in data.
  2. Investing in public participation for accountability. 
  3. Democratizing data skills for greater equality. 
  4. Creating cultures of transparency, data sharing, and use. 
  5. Funding open and responsive data systems so that all people share in the benefits of data.

This launch marks a critical moment in the evolution of the data for development community’s attitudes and practices. Nearly a decade after the United Nations’ call for a data revolution for sustainable development, we’ve witnessed unprecedented support and consensus for challenging power dynamics in data systems to ensure that data practices benefit everyone, everywhere. In a recent survey of network organizations by the Global Partnership for Sustainable Development Data (the Global Partnership), nearly 90 percent of those surveyed agreed that “the data for development community needs a stronger common vision for data ethics, rights, and governance”.

Since the Data Values Project public consultation launched in Spring 2021, over 350 people from more than 60 countries have come together to examine how to rebalance the unequal power dynamics and inequities that too often underpin data systems. Hear from those whose experiences and insights informed the project, people like Eric Ndawula, Gwen Philips, and Natalie Grover and Ivette Yáñez - with many more stories to come. 

Continuing this collective effort, a global #DataValues campaign will spark dialogue and catalyze action on the Manifesto. Anyone committed to creating a fair data future is encouraged to join the campaign, learn more about ways to engage through the campaign toolkit and sign up to receive updates on engagement opportunities. We will be supporting more people to 

Add your voice to the #DataValues campaign now: Click here to share this campaign on Twitter.

We’re also seeking applicants for a year-long Data Values Advocates program that will support grassroots and community activists to lead this global effort. The program will support those most affected by today's unequal dynamics to be at the forefront of shaping tomorrow’s data systems. A call for applications is open through October 2, 2022.

We’re eager to see how leaders across sectors run with this agenda and translate it into practical change in the communities where they work. As Josh Powell of Development Gateway explains, “my [...] hope is that the Data Values Project creates just enough of a starting framework that communities focusing on issues such as agricultural transformation, child protection, gender equity, education, and so on can find a common point of reference from which to build more detailed, sector-specific approaches to negotiating trade-offs and delivering better policies and services that improve lives.”

To support organizations, governments, and people in this effort, we’re working with partners to develop a number of tools and approaches. We will be testing new ways to foster inclusion and participatory data governance; supporting adoption of new norms at regional and global levels; making grassroots grants available to organizations pioneering ways of implementing this agenda; and learning from these activities and translating that knowledge into usable tools and resources for others.

The Global Partnership is also internalizing the #DataValues Manifesto. We are developing tools that will enable secretariat staff to apply a data values lens across our partnership brokering, network engagement, communications activities, convenings, and internal processes. 

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Participatory data governance: How small changes can lead to greater inclusion

Inclusion in data is essential for citizens to exercise their rights and hold public authorities accountable for policies and programs. Historically, “Indigenous communities around the world have experienced the adverse consequences of being excluded from data, of having no say in how they will be measured, and of having their lived experience ignored,” according to Gwen Phillips, an Indigenous data advocate and member of the Ktunaxa Nation. In Canada, this resulted in health policies that did not effectively serve First Nations people, focusing on the negative rather than recognizing the strengths of Indigenous communities. 

Inclusion in data is often understood as making sure that the experience of the largest possible number of individuals is reflected in collected evidence by, for instance, implementing data disaggregation. Data disaggregation helps to uncover the experiences of different groups of people and to identify disparities and inequalities by breaking down characteristics such as disability status, gender, or age.

Due to this focus on disaggregation, inclusion in data is often confined to the data collection phase. But participatory data governance approaches allow us to see a bigger picture as we put individuals and/or communities in the driver’s seat to define how their data are collected, managed, and used. Participatory approaches range from formalized partnerships to consultations, citizens assemblies, and steering committees (see image below). These forms vary in the extent to which they rely on direct representation of individuals (i.e. citizens’ assemblies) or indirect representation and delegation (i.e. data intermediaries). They also vary in their degree of institutionalization, ranging from approaches leveraging new legal entities (i.e. data trusts) to formal or informal consultative mechanisms (i.e. multi-stakeholder fora). 

Types of participatory data governance mechanisms / Source: Reimagining Data and Power - A roadmap for putting values at the heart of data, The Global Partnership for Sustainable Development Data, 2022.
Types of participatory data governance mechanisms. Source: Reimagining Data and Power - A roadmap for putting values at the heart of data, Global Partnership for Sustainable Development Data, 2022.

What the majority of participatory data governance approaches have in common is strong collaboration between public authorities and civil society organizations and representatives of communities that have been historically marginalized and excluded or who are at risk of being marginalized. This leads to better data and evidence for policy-making. For instance, a partnership between the Canadian government and First Nations communities led Statistics Canada to better understand the factors that exacerbate exclusion and capture the lived experiences of these communities. 

These practices are pivotal for increasing inclusion and accountability in data beyond the data collection stage. In fact, while inclusion at the data collection phase remains extremely important, participatory data governance approaches can be adopted at any stage of the data lifecycle.

  • Before data collection starts: Building relationships with communities at risk of being marginalized helps clarify “what to count” and how to embed the needs and aspirations of vulnerable populations in new data collection approaches. The National Department of Statistics in Colombia’s (DANE) multi-year work with Indigenous communities enabled the statistical office to change their population survey approach, leading to more inclusive data policies. 
  • After data is collected: Collaborating with civil society organizations enables public authorities to assess how and through which channels data should be shared with target communities. When the government of Buenos Aires wanted to provide information to increase access to sexual and reproductive health services, it worked with civil society to gather feedback and develop a platform that would be useful and accessible to the target population.
  • At the stage of data use: Participatory approaches for data inclusion also support greater data use, both by public authorities and by external stakeholders. In Medellin, Colombia, the availability of more granular and more inclusive data on teen pregnancy enabled the government to develop better prevention policies and establish personalized services for girls at risk, resulting in a reduction of teen pregnancies by 30%. In Rosario, Argentina, the government’s partnership with associations representing persons with disabilities led to the development of much more accessible and inclusive public portals, which in turn resulted in better access to services for all citizens. 

Implementing participatory data governance approaches is not without challenges. Establishing new relationships between governments and civil society organizations can be demanding, and establishing new mechanisms requires time and investment. These challenges, though, are outweighed by the knock-on benefits of participatory data mechanisms, which can spur increased collaboration among government agencies and lead to more impactful policies and effective use of public sector resources. 

The good news for public authorities is that implementing participatory governance approaches to foster inclusion does not require starting from scratch and changing existing data lifecycles entirely. Small changes in the ways in which data is collected, processed and analyzed, such as establishing working groups with civil society organizations or consulting the data subjects on their preferences for data management, can have a tremendous impact on people’s lives and substantially increase data inclusion. 

The Open Government Partnership (OGP) and the Global Partnership for Sustainable Development Data (the Global Partnership) will continue to closely collaborate to shed light on how participatory data governance approaches can advance the inclusion agenda and highlight best practices and lessons learned from OGP members and organizations from the Global Partnership’s network.

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Staying connected in a disconnected world: introducing our new identity

The world feels like a very different place to 2015, when the Global Partnership for Sustainable Development Data (the Global Partnership) began its work. Global crises like climate change, pandemics, and hunger require an even more joined-up approach to data production, use, and governance, and increase the urgency of our work. We want to see data produced by companies and NGOs on one side of the world being shared with policymakers tackling urgent challenges on the other. We want to see everyone actively participating in the governance of their own data. We want to make sure that the world’s best data is being used to solve the world’s worst problems. 

To deliver against this ambitious agenda, we are evolving our network and external identity, working with more partners from an even more diverse array of geographies and sectors, and updating our digital presence to become more inclusive and accessible. We’ve made it easier to engage in a variety of different ways: by signing up to our listserv community, joining an activity, partnering on a project, and participating at events. Everyone will be able to receive all our communications, resources, and engage at convenings.

Our network now connects more than 650 organizations from governments, civil society organizations, academia, and companies—all ready to accelerate progress on the Sustainable Development Goals with more timely, inclusive, and accountable data. We create spaces for different data communities to come together, and mobilize to break down barriers and silos between data actors, all focused on using data to drive progress for people and the planet. 

A refreshed identity and website

To increase our impact and the power of the network, we’ve updated and strengthened our identity and digital presence. Our fresh visual identity better reflects who we are and where we are going. In messaging terms, we are raising the bar and becoming more nuanced—we can only do that because of the tireless work of our partners over the years in helping people see the inherent value of data in the development space. The message is no longer simply that data is worthy of attention, but about how to design data programs and systems that are sustainable, ethical and just.

Communicating the how of building fairer, more effective data systems is complex and that’s why our new identity goes hand in hand with a more impactful and compelling online experience—ensuring the Global Partnership story and our network’s collective impact shines on our website. A few things that excite us about our revamped website is improved accessibility, a new area on impact, and an events section.

The next chapter

Our new identity comes at an exciting moment for our ever-growing network, as we look ahead to lots of connected pieces in the Autumn and beyond. Global advocacy efforts are a growing focus of our community, with 86% of our partners agreeing that a greater coordinated effort on ethical and inclusive data is needed. Answering this call, the Data Values Project campaign is launching in the Autumn, centring around a manifesto for action. Alongside this, we are working with our board co-conveners UN Deputy Secretary General Amina Mohamed and the World Bank’s Managing Director of Development Policy and Partnerships Marie Pangestu and others on raising data financing at scale.

We look forward to using our digital presence to provide more opportunities to you all: 

  • We want to get your tools used where they're needed most—share them with us.
  • We want to crowdsource solutions to the problems you are facing—reach out to talk about challenges.
  • We want to amplify your opinions on the trends you're seeing—tell us about them.

This work has been made possible by the generous support of the Hewlett Foundation to help deliver our vision. We are grateful to Soapbox and Ymbra for their support in making our new identity and website a reality. 

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Data and persons with disabilities in Asia and the Pacific: Lessons learned

This piece is part of a Global Disability Summit blog series from Inclusive Data Charter Champions.

Organizations of persons with disabilities (OPDs) must play a meaningful role in data collection, analysis, and use to have a clearer understanding of who is being affected, where, and why. OPDs’ engagement helps to identify and understand the specific barriers persons with disabilities encounter, and what policies and programs are needed to mitigate those barriers so that persons with disabilities are fully and equally included in society. 

In response to many requests from OPDs, the Stakeholder Group of Persons with Disabilities, the International Disability Alliance, and CBM Global Disability Inclusion developed a disability data advocacy toolkit on how to advocate for data and how to advocate using data. 

Emerging from the toolkit, UNFPA, and CBM Global Disability Inclusion—in close collaboration with the Stakeholder Group of Persons with Disabilities; the International Disability Alliance; and national and regional organizations of persons with disabilities, including the Pacific Disability Forum and ASEAN Disability Forum—established an innovative partnership to build capacity in and increase the quality of disability data in the Asia-Pacific region. The project ran through 2021, producing a regional report on the status of disability data in the Asia-Pacific region and carrying out disability data advocacy trainings for OPDs.

The report is based on a mapping that was carried out on the national collection of disability data from censuses and large household surveys in the Asia-Pacific region (36 countries) through UNFPA Asia-Pacific Country Offices. Organizations of persons with disabilities also shared their experiences around disability data. Information was gathered from relevant sources such as National Statistical Offices and other government focal points responsible for monitoring the Incheon Strategy indicators and corresponding Sustainable Development Goal indicators. Of the 36 countries, 20 responded. Some key findings include that:

  • The level of knowledge and ease of collecting disability data varied widely across respondents.
  • Only one in four respondent countries in the Asia-Pacific region could monitor critical disability-inclusion indicators relating to healthcare access.
  • Only one in five respondent countries in the Asia-Pacific region were using internationally recommended methods for identifying persons with disabilities in their national data systems.
  • Only in one in four respondent countries in the Asia-Pacific region were systematically identifying and reporting on barriers and enablers for persons with disabilities to access education.
  • Most of the respondent countries have significant gaps in their overall technical capacity to produce critical development indicators on persons with disabilities.
  • Although many respondent countries can disaggregate the indicators they produce, very few are using questions framed around functioning to identify persons with disabilities, for example, the Washington Group questions. This raises questions on the quality, usefulness, and comparability of the data.
  • Many persons with disabilities are concerned about inadequate data and evidence around persons with disabilities, but do not feel they know enough to confidently use or advocate for better data.

As part of the project, two pilot disability data advocacy workshops for OPDs were carried out in November, 2021. The interactive workshop included eight modules and focused on OPDs to build capacity in understanding and using disability data and how to advocate for disability data and better disability data at the national level. The workshops were carried out in person in Samoa with 15 persons with disabilities and online from Nepal with 28 persons with disabilities. Both workshops were facilitated by local OPD representatives who were also data experts. Some workshop feedback:

  • It was particularly helpful to link the training materials to local languages and contexts, especially to understand where local data comes from and how to access local data.
  • It was beneficial to focus on all data processes, including data use, collection, and analysis.
  • There is a need to strengthen internal data collection mechanisms for OPDs to address barriers to participation and to reach out to include marginalized groups.
  • Having the training in person was more effective than online.
  • It would be useful to set up a community of practice as a resource and to develop common concerns, to assist with understanding disability data, and to interpret data tools, such as the Washington Group questions.
  • As a next step, it would be important to provide advanced training on analyzing and using data in advocacy.

Overall, the findings from this project indicate that data are essential for government officials and policymakers to fulfill the rights of persons with disabilities. Understanding what, why, and how data are collected is important to inform future advocacy and investment in disability data. Also, it is imperative to involve persons with disabilities and their representative organizations and ensure they can fully participate in all data processes.

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