Responsible Data for Children

Event

On 15 November, the Responsible Data for Children (RD4C) team participated in the Abu Dhabi Child Data Symposium 2022 organised by Abu Dhabi’s Early Childhood Authority (ECA). ECA has used the RD4C resources to ensure their integrated data system handles early childhood development (ECD) data responsibly.  In many ways, life is a story and early childhood sets its tone. It is an essential first chapter in a powerful book, one critical to providing strong and equal foundations to children's lives.  Ensuring every child has the best possible start in life, however, entails understanding a child as a whole. To do so, ECD actors from sectors such as health, education, nutrition and child protection need to bring together all the pieces of information they have on a specific child's overall growth, development and well-being, regardless of the services they receive. Once these bits of data are integrated responsibly, data has the potential to generate actionable insights on children's needs and drive targeted public interventions.  It is in this spirit that ECA has recently launched the Abu Dhabi Child Insights System Program. With the cross-sectoral data obtained, ECA seeks to generate two types of insights:  macro-level insights to understand country-wide ECD challenges and develop informed policies for the Emirate; and micro-level targeted insights identifying children in need and enhancing the day-to-day support offered by practitioners.   With this two-pronged approach, ECA hopes to maximise the use of data and optimise child development and wellbeing. Because integrated data systems allow the collection, processing, sharing, analysis, and use of information from many ECD programmes, they can generate risks to the children whose data has been captured. Even if aggregated and anonymised, data can pose risks related to the re-identification of children (mosaic theory), or to demographic and group privacy. ECA has used the RD4C resources to design the Child Insights System responsibly, in alignment with the RD4C principles, to ensure the interests of the child are prioritised and the risks of using their data are mitigated.  In particular, the Child Insights System is participatory and professionally accountable:  The Child Insights System aggregates multiple administrative data sets and involves key government agencies. These actors jointly assess the trends and act upon the outcomes with coordinated measures. This participatory approach ensures that all relevant actors receive the same insights and are aligned on how to enhance children's well-being.  Access is limited to accredited users on the basis of criteria such as the user's documented experience of handling sensitive data; or the user's completion of Government credentials on data governance. Access is also reviewed and revoked on a needs basis. By developing clearance mechanisms and hands-on training, ECA relies on responsible and professionally accountable practices. To design its own responsible ecosystem, ECA also aims to learn from international ECD examples. The insightful examples from Children’s Data Network (USA), Centre for Social Data Analytics (New Zealand) and Allegheny County's Department of Human Services (USA), showed how integrated administrative data systems can be built responsibly and how their insights can be leveraged to inform decision-making at programme and policy levels.  In the next months, the RD4C team will conduct an assessment of ECA’s best practices and release a RD4C case study. The emerging collaboration between ECA and RD4C is an opportunity to shed light on government-led RD4C practices in the region and on the importance of responsible data systems from the early stages of life.   [Image credit: Piero Olliaro]

World Mental Health Day

October 10th is World Mental Health Day, an international effort coordinated by the World Health Organization to raise awareness of mental health issues around the world. Essential to this work is reaching out to children and adolescents and other vulnerable groups that may experience mental distress. Indeed, while half of all mental conditions manifest by early adolescence, there remains little data of the issues they face or an understanding of how data can inform efforts to respond to mental health. As the Responsible Data for Children team returns from a week of work on the mental health and psychosocial challenges facing refugee children in Uganda, we feel it essential to step back and think about how we might map the larger field of child and adolescent mental health in a way that helps data-driven professionals prioritize topics. In 2020, The GovLab undertook just this effort. Supported by the UNICEF’s Health and HIV team in the Division of Data, Analysis, Planning & Monitoring and the Data for Children Collaborative, The GovLab hosted two virtual workshops and coordinated with over 70 experts from around the world to understand what might be included in a constitute a consensus-based data and research agenda for adolescent mental health. The agenda focused on: Systems-level aspects of mental health, how adolescent mental health affects and is affected by laws, power structures, and technological innovations; Community-level aspects of mental health, how adolescent mental health affects and is affected by norms, attitudes, behaviors, and practices of society; and Individual and family-level aspects of mental health, referring to the effect adolescent mental health has on individual people. Read the full-size map here. We invite you to look through this topic map, linked above, or through our prior blog post or open-access research article explaining this agenda more in-depth. We believe this topic map provides a model for understanding the variety of challenges that adolescents face and can be used to inform data-driven research on the topic.

RD4C Uganda

On 23 September, 2022, the Responsible Data for Children (RD4C) initiative hosted a third and final studio in Kampala, Uganda. The studio was part of a series of studios and focus group discussions that the initiative hosted in Uganda to identify opportunities and challenges with data systems that could be acted upon to improve child refugee mental health and provide psychosocial services.  After identifying the major themes of the first two studios, the Responsible Data for Children team, supported by UNICEF and UNHCR Uganda, presented its findings in Kampala to a collection of national officials. The presentation focused on three  short-term priorities:, (1) taxonomy for MHPSS data, (2) data catalog and directory, and (3) responsible data governance.  This presentation was meant to be the prompt for an extended discussion on ways that participants could act to improve the data system affecting child refugees in the next three to six months. Subsequently, participants deliberated on the different priorities, discussing ways to address the needs identified. After dividing into three breakout groups, the participants arrived at a few solutions. The Need for a Taxonomy for MHPSS Data  Participants highlighted that a first, fundamental step was to develop a common taxonomy for MHPSS data by bringing together the already existing MHPSS refugee working groups along with practitioners in the field with direct experience with refugee children. By bringing these groups together, leaders could collectively set standards and criteria for mental health and psychosocial needs. After agreeing on standards collectively within the working group, participants emphasized the importance of the participating leaders socializing these standards within their own organizations. Only by implementing these standards and definitions internally could they become common practice. Next, once the standards and criteria for categorization are defined, the working group emphasized how all professionals working with refugee children and MHPSS should receive training to adequately and effectively categorize the data they gather. The group focused particularly on teachers and all other professionals who might make “first contact” with a child suffering from distress. Finally, participants encouraged the working group to develop and disseminate a checklist for everyone working in the field to have one standard basis to refer to. Although many check-lists already exist, these could be gathered and merged into a single standard for every actor to adopt. The Value of a Data Catalog and Directory  Participants argued for mapping the data lifecycle and the different actors involved to understand who does what, both formally and informally. This mapping, participants noted, could support accountability by identifying lines of authority and helping participants design coordination strategies around the handling of MHPSS data for and about refugee children.  Participants noted that the main actors involved in the mapping effort could be the Ministry of Health, the Office of the Prime Minister, the Ministry of Gender and Labour, the Ugandan Bureau of Statistics, as well as UNHCR and UNICEF and Civil Society Organizations (at national and local levels). Participants took an expansive view of stakeholder involvement, seeking to include all those with a relevant role in the current system. As a first step, participants suggested tasking the existing MHPSS working groups to lead this mapping.  The Importance of Responsible Data Governance  Participants reaffirmed the importance for a common data governance framework that can be adopted and implemented across government and service providers. Toward that end the participants focused on what it would take to develop a manual or standard operating procedures around MHPSS governance.  Among the topics such a manual would cover include managing access to data; storage and security of data; quality, reliability and validity of data;  among other areas. To advance the creation of such a manual, the participants suggested the creation of a dedicated expert group that could compare best practices and present a draft to the MHPSS working group in the short term. ***   These are just a few reflections from our final studio. In October we will publish a more comprehensive and in-depth field report, to illustrate everything undercovered during Responsible Data for Children’s visit to Uganda. For more information on the Initiative, visit our website or reach out at [email protected]       PHOTO LEFT: Participants deliberate during Studio 1 in Kampala. PHOTO RIGHT: Participants deliberate during Studio 2 in Isingiro.

RD4C Uganda

On 19 and 21 September, 2022, the Responsible Data for Children team hosted studios in Uganda. These meetings sought input from national officials and local service providers into their attitude toward the data systems in Uganda affecting child refugee mental health and psychosocial services.  Using a data lifecycle approach—a model that tracks the development of a data initiative from planning through collection, processing, sharing, analyzing, and use of data—participants across the two days described what they saw as the major opportunities and challenges affecting Uganda’s data systems. Guided by the RD4C Principles, they described the various ways that data did and did not support the well-being of child refugees. On Thursday, the team reflected on these meetings in coordination with UNICEF and UNHCR Uganda. After reviewing what the different participants focused on, the team identified several takeaways spanning the data lifecycle. However, four short-term priorities stood out among the rest: Streamlined Decision-Making: Participants indicated they would benefit from a map of who takes decisions on what to promote a more unified approach to the mental health and psychosocial needs of children. Without this map, participants found it difficult to work with one another or to even know who to contact. In the words of one participant, “it can take a lot of coordination to get all of us organizations together.” The Need for a Taxonomy for MHPSS Data: Several participants expressed concerns that data is often cataloged differently by different organizations and that it has varying levels of quality, which could make analyses difficult. One participant noted, “When we talk about processes and standards [...] most organizations work in different silos where data is only collected to donor requirements.” The Value of a Data Catalog and Directory: Organizations could benefit from better understanding who is collecting what data, when, and for what purposes (as well as the leaders responsible) to avoid duplication and re-traumatizing children. The current lack of awareness meant that organizations often engaged in duplicative projects that could lead to refugee children having to provide the same data multiple times. Responsible Data Governance: Finally, the team noted one issue that did not come up explicitly in the discussions: data governance. There are ways to manage risks when using MHPSS data for refugee children by developing agreements for data sharing, guaranteeing group consent and participation, expanding protections, and addressing data biases. Trying to identify what is needed to promote the rights and protection of child refugees is essential so that participants don’t, as in the words of one participant, “collect data as much as possible for whatever purpose [I need].” *** These are only a few of the reflections that emerged from the first two studios. Tomorrow, we’ll share reflections on how participants used these takeaways in the final studio to generate ideas that can improve mental health and psychosocial service data systems in Uganda. Stay tuned for these insights and contact us at [email protected] for more information.     PHOTO LEFT: Mr Kato Freeman from the Ministry of Gender, Labour, and Social Development provides opening remarks  during Studio 1 in Kampala. PHOTO RIGHT: Participants deliberate during Studio 2 in Isingiro.