How can local health data improve global health outcomes?
Partner: Institute for Health Metrics and Evaluation (IHME)
My role
Design research lead: planned and conducted in-person and remote qualitative research with participants in 8 countries; led synthesis and development of opportunity frameworks
Design strategy and support: led development of feature roadmap, facilitated stakeholder co-creation workshops
Collaborators:
Design: Holger Kuehnle + Andrea Kang
Sponsors: Sheryl Cababa + Courtney Rossi
Opportunity
Understand how health policymakers and decision-makers in countries around the world currently access, share, analyze, and use local health data. Identify challenges they face and opportunities to help them expand their impact and improve health outcomes through a digital data platform.
Impact
We envisioned how IHME’s Local Burden of Disease data platform can best support health policymakers and decision-makers in the future. To bring the vision to life, we also created a roadmap that prioritized new user-centered product features for development and illustrated key user scenarios to foster stakeholder alignment and build momentum.
Overview
IHME is a leading health institute, equipping health policymakers, program teams, and analysts around the world with data and projections on health challenges ranging from COVID-19 to stunting.
While aggregate data at a national level is important, it can mask important regional and local trends. For instance, although a country may have low prevalence rates of HIV overall, specific cities or villages within the country may have high rates.
IHME launched the Local Burden of Disease (LBD) data platform, and a supporting engagement team, to help health officials and decision-makers in different countries consider data at a local rather than regional level. By doing so, they can invest resources, create appropriate health policies, and deliver targeted health programs and interventions where they are most needed.
Program Goals
IHME had launched the Local Burden of Disease data platform, but it was not widely used. My team sought to:
Understand data decision-making workflows: How do health officials currently use local health data and what challenges do they face?
Envision the future of LBD: How can LBD evolve to increase its impact?
Increase engagement and data sharing: How can LBD better integrate with health decision-making workflows and the health data strategies of countries and institutions?
Process
Immerse to assess the current state
We started with an inside-out approach: we interviewed IHME stakeholders and assessed the existing LBD platform through heuristic evaluations. By examining data from Google Analytics, we identified existing patterns of engagement to further explore through qualitative research, including how engagement varied based on traffic source and where people spent the most time on the platform. We also embraced outside-in immersion: by auditing the broader landscapes of global health, data platforms, and parallel sectors for analogous inspiration, we gained insights on how to best position and evolve LBD.
Research to identify opportunities
To understand common workflows related to decision-making and local health data, I led mixed-methods qualitative research with 50 participants in 8 countries, including remote interviews and in-person sessions in New Delhi, India and Addis Ababa, Ethiopia. I also led collaborative synthesis sessions of the research with IHME to identify challenges and actionable opportunities for the LBD platform regarding decision-making with local health data.
Strategize and envision LBD in the future
We created a vision for the ideal future of LBD, informed by our research. We provided an actionable plan for delivering the future vision by creating an opportunity framework and a roadmap for LBD, as well as generating and prioritizing user-centered features for development.
I led research to identify challenges and opportunities along the health decision-making journey.
Community of use
Who among health policymakers, program staff, and funders use local health data to inform their decision-making? How do they translate health information to policy decisions, program design, and impact?
Context of decision-making with data
What factors influence the interpretation and use of local health data? What factors facilitate collaboration, data ownership, and scale regarding health data across different geographies and levels of government?
Health data
What makes local health data useful, trustworthy, accessible, and of high quality for stakeholders and organizations across geographies?
Local Burden of Disease platform
What enables and inhibits uptake and use of data platforms and local health data? What are LBD's strengths and opportunities for improvement?
I used multiple research methods, which allowed our team to triangulate nuanced insights across different sources of data.
Narrative tours to understand participants' workflows, work contexts, and existing data analysis tools
Barriers mapping to understand potential challenges to using local health data and appreciative inquiry to identify existing solutions to overcome them
Evaluative research and user testing of the existing LBD platform to identify opportunities for product improvement and discuss how LBD could better integrate with people’s workflows
Sacrificial concepts to probe on stakeholders’ motivations and aspirations regarding health data and co-create potential features for LBD
Insight
The data platform neglected the second half of the health decision-making journey.
We identified 4 phases in the health decision-making journey. The existing LBD platform, as well as most health data tools, are focused on the first two phases: helping analysts collect and analyze data.
However, our research revealed that it is crucial and can be very difficult for analysts to influence and persuade others to make health policy and program design decisions based on local health data. If health officials, decision-makers, and implementation teams do not appropriately prioritize time and resources to address the health challenges surfaced by data, then local health data does not lead to impact, regardless of how nicely it is visualized.
“We have a lot of fancy reports sitting on the shelf - but they are not translated into action.”
All of the data analysts we met with found the local health data on LBD to be extremely useful. However, their shared challenge was communicating health data in a way that compelled health officials and decision-makers, who often have many competing priorities, to take appropriate action.
We identified several key insights
and pain points throughout
the health decision-making journey.
Through our research, we learned not only about how the LBD data platform could be improved, but also how data is used to create more appropriate and effective health policies and programs.
Due to confidentiality, I can’t share much online, but happy to chat more in person or on a call!
“The accuracy of data is a sticky topic. We all know it’s not accurate, but it’s the only thing available.”
When collecting and analyzing data, the analysts we interviewed were often skeptical of data platforms and the validity of presented data.
A people-centered vision to guide IHME's product development and country engagement strategies
Using insights from our research as a starting point, I facilitated collaborative synthesis and ideation sessions with IHME stakeholders. Our efforts resulted in an actionable opportunity framework and roadmap. These outputs not only guided the product development of LBD, including feature prioritization discussions, they provided IHME staff with strategies and tactics for increasing health policymaker and analyst engagement with the LBD platform across countries and districts.
To generate excitement and build momentum towards implementation, we brought the future vision of LBD to life by illustrating key user-centered features along the roadmap.
Example design solution informed by research
Increasing trust and understanding
Several analysts we met with expressed uncertainty about how the local data and projections on LBD were modeled and how to interpret the visualizations. To address these concerns, we advised IHME to:
Increase transparency by showing the estimated accuracy of models and data sources in context in the visualization.
Organize and label visualizations using the names of districts, cities, and neighborhoods. This was more understandable to stakeholders than the previously used geographic coordinates and also aligned with how funding for health programs and services is distributed.
As a research participant affirmed, “I need to know how you are capturing your data, how are you analyzing it, and what are the variables of which you’re analyzing your data.”
Example design solution informed by research
Influencing stakeholders to take action
We learned through research that decision-makers are constantly prioritizing what they perceive to be the most pressing problem.
Ranking the top health challenges by location is a way to attract their attention.
Presenting comparisons for different health indicators motivates people to take action to address lagging performance, as decision-makers and politicians do not like to be perceived as behind the curve.
Validating this design direction, one research participant shared, “Use of comparative data helps identify which areas should be prioritized for intervention, and could be used to identify where to fund certain projects.”
Impact
Because we engaged IHME stakeholders throughout our synthesis and design processes, they were able to seamlessly transition to feature implementation. The user-centered features we envisioned were incorporated into the team’s development roadmap for LBD.
IHME staff also adopted our recommended strategies and tactics, surfaced through research, for engaging in-country health policymakers and decision-makers and socializing the LBD platform.
As more people in local contexts leverage LBD in decision-making and contribute data to the platform, the platform’s impact will continue to increase.