Creating a global atlas for rheumatic heart disease data in an easily accessible format using graphs, maps and tablesInstantAtlas in action
Rheumatic heart disease (RHD) is a preventable, treatable form of cardiovascular disease that affects over 32 million people around the world and claims 275,000 lives annually. It affects the world’s poorest, most vulnerable populations and imposes heavy costs on the health systems that can least afford it. If left untreated, RHD can lead to heart valve damage, stroke, heart failure, and death. Treatment of advanced disease requires costly surgery unavailable in many parts of the world. In endemic countries, prevalence of this preventable disease is a stark measure of health system failure and inequality. RHD is the most commonly acquired heart disease in young people under the age of 25. It most often begins in childhood as strep throat. If left untreated, RHD may progress to serious heart damage that kills or debilitates adolescents and young adults and makes pregnancy hazardous. Although virtually eliminated in Europe and North America, the disease remains common in Africa, the Middle East, Central and South Asia, the South Pacific and in some vulnerable populations in high resource settings, such as Indigenous Australians in Australia and Māori and Pasifika populations in New Zealand.
RhEACH is a founding partner of the RHD Action Alliance, along with Medtronic Philanthropy and the World Heart Federation. The RHD Action Alliance collectively work together toward the shared goal of eliminating RHD globally. However, global control of RHD has been hampered by inadequate burden of disease data and a fragmented approach to research, clinical care and advocacy. Valuable disease control efforts are underway but isolation diminishes their impact. We spoke to Timothy Johnson, RhEACH Program Coordinator, about the alliance and how it has used InstantAtlas to amplify the impact of existing activities, spur new ventures and achieve measurable goals.
When did you first find out about InstantAtlas?
RhEACH first came across the mapping software a number of years ago when other organisations started to use it to present complex technical data that allowed stakeholders to compare information and statistics in a more manageable way. We quickly realised it would be a better way for us to present our technical data and we were particularly impressed with the user friendly and interactive nature of Bowel Cancer Australia’s data mapping. Our primary focus was to allow users to make data comparisons. Before we developed our maps, there wasn’t a single source for this data.
How did you use InstantAtlas?
Mapping the distribution of disease is essential to the development and delivery of effective population health interventions. Therefore, the main aim of using InstantAtlas was to bring together and present estimates of burden of disease for RHD and to incorporate published regional estimates drawn from screening studies.
We had a conversation with the InstantAtlas adviser (Software with Success) before we created the Atlas. We knew what we wanted to do with the software and she was instrumental in helping to explain to us how that might be possible.
Following our training we were able to map both quantitative data for the burden of RHD and qualitative data regarding control programs and research sites. By doing so we were able to present data clearly and create the online Global Atlas of RHD. The atlas was launched on World Heart Day 2015 and it has provided a powerful visual platform to display progress towards targets, distribution of services and outstanding needs.
Who is the Global Atlas of Rheumatic Heart Disease for?
The atlas gives everyone the chance to see the global distribution of RHD and presents the data in a way that is intuitive and user friendly to people who are not GIS experts. As a result, our users are a broad and diverse group and include: researchers, clinicians, policy makers, advocacy and awareness from the NGO and NFP sector as well as people living with RHD, their families and broader community.
What sort of feedback have you had?
Provisional feedback has been positive. We are working with our partners to illustrate how this tool can be used and how stakeholders can contribute their own information to make the atlas even more rich and detailed.
What are your plans for future developments?
Throughout 2016, the Global Atlas of RHD will be updated with qualitative data for an additional 50 countries, providing a comprehensive overview of ongoing programs or research aimed at reducing the burden of RHD.
We also plan to publish an Australia specific atlas to provide regional burden of disease estimates and information. Further exploratory and inferential analyses of the dataset will examine disease associations across varying health and social domains which should help with its secondary aim of identifying where gaps currently exist and to encourage research in addressing these.
What are the benefits of using InstantAtlas?
RHD Atlas was developed using InstantAtlas Desktop