HOPE – Helping Optimize Pandemic response Equity

Developing a disability inclusive data ecosystem to increase equity for people with disabilities in emergency responses in Uganda.

Dr. Elena Schmidt, Director of Evidence, Research & Innovations, Sightsavers

People with disabilities have been disproportionately affected by the COVID-19 pandemic with increased risk of infection, severe disease and death, while the economic downturn has impacted them hardest. This is all too common in  emergencies. Certain groups, including those with severe impairments, women, older people and people in remote locations, are among the worst affected and are in greatest need of support.

The UN’s Inter-Agency Working Group on Disability-Inclusive COVID-19 Response and Recovery highlighted issues that impeded the inclusion of people with disabilities in responses, including lack of data and limited engagement with organisations of persons with disabilities.

In Uganda, despite comprehensive national surveys and administrative data, millions of people with disabilities missed out on measures in the COVID-19 response. One reason is that existing data systems operate in silos leading to incoherence and limited analytics. Local governments and civil society are at the forefront of the responses, but have mainly relied on their own, often informal data and networks with limited capabilities to understand and prioritise needs. 

This disconnect between available datasets and local access to comprehensive information about those at greatest need, is a significant barrier to a disability inclusive recovery that we propose to overcome. 

Ultimately, our solution will benefit people with disabilities in Uganda as pandemic and emergency responses and recovery will develop more inclusive and equitable approaches.

To achieve this, our primary target audience is the agencies and organisations implementing the National Disaster Preparedness and Management Policy. Led by the Department of Relief, Disaster Preparedness and Management, in the Prime Minister’s Office, the process involves all government ministries, humanitarian and development partners, the private sector, local governments and the community. Our solution will enhance government capacity and reduce the risk of people with disabilities continuing to be left behind. Our solution will enhance the data system maintained by the National Emergency Coordination and Operations Centre and the strategies of all implementing agencies, including organisations of persons with disabilities.

To date, a formative assessment and consultations on the value of integrating datasets have been conducted with the Uganda Bureau of Statistics (UBOS), the Ministry of Health, the National IT Authority (NITA) and the National Council for Persons with Disabilities (NCPD). All are committed to the Solution and have joined our Solution Team. 

Our Solution will improve the availability and quality of data relevant to emergency responses in Uganda. These improvements to the data ecosystem will benefit all government ministries, international partners and civil society organisations involved in Disaster Management. All newly-created data and systems will be freely available to those who need them, in accordance with Ugandan regulations on data storage and use. We will advance public knowledge on how to enhance the interoperability of data systems and showcase a methodology to ensure response decision-makers have access to analytics. We will pay particular attention to ensuring our outputs are accessible, in every sense, to people with disabilities and their umbrella bodies.

Our processes of co-creation build local capacity and strengthens local systems, which will facilitate the scalability of this work in Uganda and elsewhere. Final outputs will include at least two open access peer-reviewed publications and presentations at international conferences. We increasingly use innovative approaches to communicate our research and findings using creative media. We will adopt similar approaches here and develop interactive ways to communicate our journey to share lessons learnt and foster replication.

Our solution will enhance government capacity to identify people with disabilities, who are particularly vulnerable to the impact of the COVID-19 pandemic and other emergencies, and help decision-makers take data-driven decisions tailored to meet specific needs.  Data will help these decision-makers apply a disability lens in all emergency responses and ensure people with disabilities are not left behind. Strengthened data analytics will make emergency responses and recovery more disability inclusive and equitable.

Specific examples of how improved data can make emergency responses more inclusive are:

1. More accessible information about infection and methods of prevention in pandemics;
2. Provision of essential medicines for people requiring daily treatment during lockdowns (eg. people with epilepsy, schizophrenia, HIV/AIDS, type I diabetes);
3. Improved planning and more inclusive organisation of virus testing and medical care services;
4. Better support in home schooling for children with disabilities during periods of school closure;
5. Better provision of financial and social support to individuals and families affected by disability; and
6. Opportunities for people with disabilities to provide feedback and shape emergency responses. 

Our Solution will also strengthen collaboration between key disability and data stakeholders, who will work together to address emerging challenges and develop a shared understandings of solutions.

The latest census shows 12.4% of the Ugandan population lives with a disability, and based on current population estimates, this is 5.5 million people.  Our Solution will have a transformational impact on millions of lives and particularly those who are most vulnerable, women, older people, people in remote locations (See our Factsheet).

Our Solution is designed with sustainability and scalability in mind. Our previous experiences show that these are achieved, when interventions are contextually appropriate, owned by government agencies and integrated within existing systems. This is why we undertake a participatory action and co-creation approach, foster harmonisation of existing data and build upon processes within the national data ecosystem.

By the end of Year 1, we will have built a clear, evidenced and trust-based consensus on the need for joined-up disability data, supported in early Year 2 by solid cross-governmental institutional frameworks, including data sharing agreements, a common data standard, a feasibility plan for interoperability and a costed harmonisation action plan. 

From this foundation, we will work collaboratively to develop technical solutions to integrating priority datasets and systems, by Year 3.

Our methodology will provide a replicable model and actionable roadmap to scale-up data interoperability efforts within and beyond Uganda.

We will adopt a flexible approach to monitor and evaluate progress to impact, using a Theory of Change we developed in a participatory manner as a guide.  We will build in regular reviews to allow for necessary adaptations. Our approach will be open to review and refinement by disability data stakeholders which will have three significant benefits: 

• Improved ownership of the interventions; 
• Improved likelihood of identifying unintended effects; 
• Increased capacity of stakeholders to identify issues, investigate systematically, and support the development of solutions.

We draw on our extensive experience of monitoring progress and evaluating the impact of research and development projects to ensure our approach meets the needs of our stakeholders. The first step on our roadmap is to build trust and consensus on the value of integrating datasets. We will encourage stakeholders to develop an index against which they will self-rate their own agency’s initial status, and then revisit this assessment at points throughout the timeline. This approach promotes the development of relationships between the different stakeholders by allowing them to discuss and develop mutually agreeable indicators against which they can review the relative progress of each agency, fostering synergies and developing loci for potential collaboration. 

Our Solution requires access to data from surveys, administrative systems, the civil identity system and service delivery data from public, private and NGO providers. Full access to private and/or civil identity data may be more challenging given the sensitivities around competition, national security and the recent Data Protection and Privacy Act, which could lengthen bureaucratic processes.

Overcoming these challenges will draw on initial buy-in from data owners for our Solution, as well as legal arrangements that guarantee access to information for the common good (e.g. Access to Information Act; MoH E-health Policy, UBOS Microdata Access Policy; and MoGLSD IMS harmonisation strategy). Adequate resources will be allocated to ensuring sustainable institutional arrangements are embedded, and this will be reinforced by the central role of government actors on our Solution Team and the Disability Data Working Group.

An additional barrier is that facilitating processes of this type can be costly.

Overcoming this will require realistic budgets based on our previous Ugandan and global interoperability work; recognising the significant time and resources needed for this detailed work. This ensures pragmatic decisions are taken on datasets and systems which consider the realities of technical, financial and time constraints.

• Sightsavers
• Development Initiatives
• National Council for Persons with Disabilities, Uganda
• Ministry of Gender, Labour & Social Development, Uganda 
• Uganda Bureau of Statistics
• National IT Authority, Uganda
• Ministry of Health Uganda

The COVID-19 pandemic has brought the world unprecedented challenges. This Challenge gave us an opportunity to reassess our earlier analytical work and develop an innovative solution, which can mitigate the impact of future emergencies on those, who are most vulnerable.  

Our Solution is well aligned with The Trinity Challenge vision of strengthening the use of data and analytics to improve health and wellbeing and facilitating unique collaborations and partnerships. 

In addition to the funding, which will allow us to pilot our Solution in a real life setting, the prize will help us promote digital technologies and innovations as effective tools for sustainable development. It will bring attention to the opportunities that data and technological advances can bring and more importantly, how they can be available to all and particularly those in greatest need.  

The Prize will help us establish new relationships and partnerships both in Uganda and globally. Working  together with The Trinity Challenge Members will create many new opportunities to provide the reputational momentum to galvanise support to our Solution in Uganda and accelerate our global work on disability inclusive data.  

We remain open to partner with any Trinity Challenge member that may be able to advance our user-driven Solution. This includes members who could provide direct access to technology, data science and engineering expertise, and long-term technical assistance to sustain our impact and work with UBOS and other disability data stakeholders.

Whilst the specific ways through which Trinity Challenge members could advance our Solution will predominantly emerge during delivery, given our participatory action and co-creation approach, members whose expertise may align at this time include: 

• London School of Economics and Political Science, given their work on data ecosystems; 
• University of Melbourne, given their involvement in the Data for Health Initiative.
• Joep Lange Institute, given their work on global public goods.

Overall, we welcome support from any members who could provide practical advice, intellectual integrity, political experience and peer review of our Solution.