Research during humanitarian crises: challenges, impact & open data

Posted by Biome on 2nd July 2014 - 2 Comments


Haiti, Syria, and Myanmar bring to mind just a few of the humanitarian crises that have erupted across the world in recent years. In areas of conflict, epidemics and natural disasters, the burden of public health is heightened. A clear understanding of how to manage health in such situations requires extensive research in settings that are far from ideal. Some of the key challenges and progress in research in humanitarian crises are discussed in a recent Editorial in Conflict and Health, and were more widely debated at the 2014 Médecins Sans Frontières Scientific Day (summarised in Biome here). Journal Development Editor for Conflict and Health Natasha Salaria went along to MSF Scientific Day find out what those in the field see as the biggest challenges in conducting research in these settings, and what role open data has to play. Here Andrea Stewart from the Worldwide Antimalarial Resistance Network, UK, shares her thoughts on operational research and clinical trial data, while Patty Kostkova from University College London, discusses digital healthcare and health surveillance.

 

What do  you think is the biggest challenge in conducting scientific research in emergency settings where healthcare relief is a priority?

PK: My answer is twofold. Although my research isn’t predominantly set in emergency settings, I have worked in the developing world a lot and one of the main issues is that when resources are scarce, the demand for healthcare professionals is much higher. Research therefore cannot stand in the way of providing care to patients in these settings. How we can make it easier to collect data to fulfil the research potential whilst also ensuring care is provided is a challenge.

The other area we have been struggling with is digital health research in the developing world where there is lack of connectivity of the internet and technological disadvantages. We would like to conduct more research here but sometimes we have to opt out due to, for example, limited bandwidth. However things are improving, especially in regards to mobile phone coverage.

AS: Several challenges exist when we are putting in place operational research in emergency settings – these include the availability and reliability of resources and technology to gather and store data in the field. In fragile and conflict affected contexts we can face multiple challenges in gaining access to patients due to geographic isolation or migration; we also have to swiftly understand socio-cultural and political issues and threats such as military and non-state violence directed towards research staff and patients. Where possible, we need to ensure we can deliver reliable, safe and valuable research programmes that will improve our collective understanding of a particular priority public health issue.

 

In 2012 MSF opted to make the data its clinical and research staff collect freely available online. Why is open data particularly important in the humanitarian sector?

PK: I think open data initiatives are tremendously important in the medical sector. Collecting data is an expensive, time-consuming exercise and all data sets should be made available for research purposes. Not just in the emergency sector but in any health sector, we should really try to drive the policy and make stakeholders accept open data initiatives.

 

How far along are we in ensuring data from medical and healthcare studies is freely accessible? 

AS: The Worldwide Antimalarial Resistance Network is a global research network focused on coordinating the storage, standardisation and analysis of antimalarial drug data sets in a secure Data Centre. The network combines the research results of more than 230 research partners to help broaden and deepen our understanding of antimalarial drug research results. We hope that over time it will become easier and less contentious to enable open access provision of clinical trial results. For now, due to the ethical and legal sensitivities of open access, we are working towards supporting ‘controlled access’ to sensitive patient results. Working with our partners exploring the steps required to move towards the provision of open access data, with careful consideration of patient privacy.

 

What was the most interesting message that you took away from this year’s MSF Scientific Day?

AS: My key learning was around the need to ensure that all the brilliant research that is developed by MSF teams, and their partners, needs to be continually communicated and accessed across the public health community so that operational programmes, international and national decision-makers, can use this evidence to strengthen their strategies and policies.

PK: I think the most exciting talks were about using mapping and voluntary participation from citizens or patients, in countries like Haiti during the emergency, to support healthcare professionals. This is the future – one where we can share the burden of surveillance between healthcare professionals, volunteers and citizens.

 

For more on the challenges and advances in humanitarian scientific research, read what Médecins Sans Frontières’ Sarah Venis had to say about the debates and key topics discussed at the 2014 MSF Scientific Day.

 

More about the author(s)

Patty Kostkova, Principal Research Associate, University College London, UK.

Patty Kostkova, Principal Research Associate, University College London, UK.

Patty Kostkova is a Principal Research Associate for eHealth in the Department of Computer Science at University College London, UK, and also maintains a research scientist post at the Institute for Scientific Interchange (ISI) Foundation, Italy. Following her PhD in computer science, Kostkova gained extensive international experience at public health agencies including the World Health Organization and the European centre for Disease Prevention and Control. Until 2012, she was Reader and the Head of City eHealth Research Centre (CeRC) at City University, UK. Her research applies the disciplines of computer and information science to real-world medical problems, such as infection control, public health, disease surveillance and epidemic intelligence. Techniques employed include semantic navigation, and data mining of social networks, and the use of medical ontologies and digital libraries. Kostkova is also a special lecturer at the School of Arts and Social Sciences at City University, UK.

Andrea Stewart is Head of Communications & Advocacy at the Worldwide Antimalarial Resistance Network (WWARN) based at the Centre for Vaccinology & Tropical Medicine at Oxford University, UK.

Editorial

Conflict and Health: seven years of advancing science in humanitarian crises

Ratnayake R, Degomme O, Roberts B and Spiegel P
Conflict and Health 2014, 8:7

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