Dr Mahamoud Sama Cherif (University of Conakry, Guinea) presented on ‘Establishing equitable governance and partnership for the Ebola Data Platform
Over the last 40 years there have been more than 20 outbreaks of Ebola Virus Disease. The many challenges in responding to these outbreaks have severely limited research. This led to inadequate understanding of how to most effectively treat patients and respond to these epidemics despite many outbreaks
During the severe outbreak in West Africa, the governments coordinated an international response to the outbreak. However, there was no mechanism to coordinate the knowledge and data produced.
A better evidence-informed response requires more data, which will increase the statistical power of the analysis, combining data will allow a more representative analysis across patients, time and countries But the datasets were scattered all over the world.
A possible solution is offered by the Ebola Data Platform. It gives an opportunity to bring together the many disparate collections of clinical, laboratory and epidemiological Ebola data in a centralised, harmonised dataset that can be accessed for research.
To achieve that aim, some of the challenges identified are:
- Retention of national data ownership
- Loss of academic recognition
- Criticism or exploitation of the data generators
- Sharing benefits with communities where data is generated
- Patient privacy
- Appropriate consent
- Perceived data misuse.
To overcome these challenges, several important steps were suggested:
- Robust ethical framework
- Strong governance
- Underpinned by the promotion of equity.
In summary, the platform was designed and developed to deliver on the research and training priorities of Ebola-affected communities. Developing a governance framework centred on principles of equity has the greatest potential to impact public health preparedness, future outbreak response, and patient outcomes.