Building Quality Informatics to Save Lives
March 1, 2017
Better data can help save young lives – that’s the core belief at the heart of CHAMPS’s work. Although under-five mortality has been halved over the last 25 years, a lack of complete, timely data has hampered efforts to reduce that number even more.
That’s why CHAMPS is investing in unprecedented data collection, analysis and management systems across its network of six sites. The challenge is not only to discover the specific reasons that children are dying, but also to find – and often build – ways to disseminate that data to a wide range of public health officials, researchers, scientists and others who can take action.
And that’s where informatics – the design of efficient, high-quality data systems – comes in.
Tim Morris, who leads CHAMPS’s informatics team as part of the Public Health Informatics Institute (PHII), is at the forefront of these efforts. Earlier this month, he travelled to Mali with PHII colleague Wais Said to work with counterparts from CHAMPS’s site in Bamako. Here are some of the insights that Tim shared with us upon his return:
Building quality informatics systems is a long-term, hands-on commitment.
Our first visit was in May 2016, to meet the team, understand their skill sets and take a look at infrastructure and connectivity. From that, we got a sense of the existing processes and the gaps for doing something as ambitious and innovative as CHAMPS. Our site partners (CVD-Mali) have a great four-person informatics team that’s responsible for local technology needs, as well as for training research teams on using mobile devices for data collection.
Between site visits, we’ve had regular conversations to continue planning and work through any issues – at first, once a month, and every week as we get nearer to full implementation.
On this trip, we went to check out preparations so far, to get software configured for data capture, to install and test mobile data collection systems, and to confirm that infrastructure is in place to get started on CHAMPS activities. In assessing progress, we work from a checklist, which has matured and evolved as sites have been established.
No two sites are the same.
The data specifications and workflow for CHAMPS are complex; it’s helpful to be able to sit down in person with our site colleagues and discuss the different processes. Things are slightly different between sites, depending on existing systems and site capacity. For example, the site team in Mali will be doing notifications, eligibility screening and consent in communities and at health facilities from the very start, which is a first for CHAMPS.
Overall, we need to ensure comparable, standard data from each site. That requires a consistent workflow, but also a considerable amount of flexibility based on the needs and strengths of the individual CHAMPS sites.
Our overall goal is consistent: getting high-quality, actionable data to those who can make a difference.
Once data is captured, sites upload it to a data management portal here in Atlanta. We validate the data through ongoing quality assurance and quality control processes, working with sites to resolve any issues. The first few months of sending and receiving data is definitely a discovery period, during which we are able to adjust and improve processes.
Some of the data produced at sites requires more immediate action. For example, if the data reveals certain pathogens like tuberculosis in a deceased child, that’s a public health problem and we need to act quickly to let the household know.
In most cases, data will be available after final cause of death determination. That’s when IANPHI helps facilitate the process of sharing data with National Public Health Institutes and Ministries of Health to explore public health policy, research and other actions – with the ultimate goal of reducing child mortality and saving young lives.
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