How open data could save millions of lives

In recent years, we’ve made tremendous progress against global health challenges once thought to be insurmountable. With stronger coordination, targeted investments and increased access to life-saving tools, child mortality has been halved in the past 25 years and millions of lives have been saved from infectious diseases. In short, children are living longer, healthier lives, and once struggling economies are thriving.

But despite these successes, there’s one piece of the puzzle that continues to elude us: data.

In May, a global group of public health experts convened by Chatham House took a bold step forward that stands to change that, issuing a call for all public health surveillance data to be shared as necessary to improve and protect public health. This call comes as part of the group’s work – with support from the Bill & Melinda Gates Foundation – to support the creation of an encouraging environment for public health data sharing. Chatham House will help drive further action in this area with its forthcoming platform of practical solutions and tactical guidance for stakeholders to engage in meaningful discussions to improve sharing of routine surveillance data and information.

Building on previous data sharing discussions in the context of emergencies, this call was developed by convening leading public health and data sharing experts along with representatives from the World Health Organization (WHO) and the World Organization for Animal Health (OIE) at Chatham House to discuss legal, technological and ethical factors and the most effective ways forward. With more than 50 signatories from leading global public health organizations, it serves as a strong example of diverse partners coming together to commit to an open-access paradigm that will benefit the global community.

This commitment to share routine surveillance data holds enormous potential to help bridge the great data divide that stands in our way of continued success, including achievement of the ambitious SDGs. The sad fact is that, in many countries, we still don’t have a strong grasp of the true burden of any given disease. For example, while we see more children living to reach their fifth birthday today, a perverse consequence of our success in this area is that those who don’t reach this milestone are dying from causes we simply don’t understand very well. Almost half of all child deaths occur in the first month of life, and are commonly recorded as a “neonatal death”, leaving the actual cause of death to fuzzy estimates and imagination. Every day, parents are further heartbroken when their child’s death is lumped into the foggy category of “unknown cause”.

Deficient surveillance data has implications that reach far beyond incomplete mortality records and vital statistics. Recent public health emergencies like Ebola and Zika have highlighted the critical importance of data to proactively containing the spread of disease and bring targeted interventions to highest-burden areas quickly. More critically, they have crystalized the need for stronger surveillance systems and greater access to information to coordinate an effective public health response. On the other hand, these recent crises also unearthed barriers to data sharing, with issues surrounding propriety and publication seriously hindering the availability of data critical for decision-making.

Various consultations have sought to address these challenges. Last September, the WHO hosted a gathering that resulted in a commitment by major biomedical journals to allow – and encourage – sharing of pre-published data without penalization. Such a commitment has helped to unlock access to evidence in a quicker, more open manner than ever before during times of crisis.

But the benefits of data sharing are not – and should not be – restricted to outbreaks. On a more regular basis, routine public health surveillance data helps to inform policy and prioritize investments; it enables regional collaborations, capacity strengthening, insight into public health system performance, and ultimately benefits the global community through better control of infectious diseases. Yet despite the concept of public health surveillance as a public good, sharing of such data beyond national borders remains relatively uncommon, largely because we lack the global framework to do so.

There are a few areas, however, where the idea of sharing surveillance data has been brought to life, with high levels of success. For example, regional disease surveillance networks, including the Mekong Basin Disease Surveillance (MBDS) network, create lifelines between neighbouring governments in the region, with countries actively working together to share real-time surveillance data to address public health issues.

The Child Health and Mortality Prevention Surveillance – or CHAMPS – is another good example. Leveraging the use of minimally invasive tissue sampling (MITS), the CHAMPS network will allow us to more accurately pinpoint cause of childhood death. This initiative will ultimately help improve primary child mortality data, allowing us to closely track introduction of vaccines and other programmes, and better target future investments at national and sub-national levels. It will take time for clear results to come through, but initial results from pilot sites are promising. As the network grows, and access to public health surveillance data becomes more open, the programme stands to generate a global database on child mortality and infectious diseases that will improve global modeling, influence decision-making, and improve global health security across borders.

As we set our sights on the 2030 targets outlined in the SDGs – and various others over the next 15 years – we must begin to think through practical solutions that improve data collection and encourage its sharing so that we can make targeted, educated policy and programme decisions across all contexts. The Chatham House discussions and last month’s statement have helped us take an important step to create a data revolution that could change the course of history. Now it's up to the rest of us to translate commitment into action.

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