SHARING IS CARING:
HOW DATA COLLABORATION TRANSFORMS HEALTH RESEARCH

By: Aly Diana

The integration of data-sharing practices in health research marks a pivotal advancement in scientific discovery and public health. This shift towards open science is revolutionizing how we approach medical research, yielding profound benefits for society as a whole.

Maximizing Utility of Research Data

The primary advantage of data sharing lies in maximizing the utility of research data. This approach ensures that the contributions of trial participants are used effectively, thereby enhancing public health outcomes. In fields such as malaria and neglected tropical diseases, sharing research data facilitates secondary analyses, filling critical knowledge gaps without necessitating additional patient enrollment. This not only reduces risks associated with patient participation but also accelerates scientific discovery.

Strengthening Evidence for Underrepresented Groups

Another significant benefit of data sharing is the ability to pool data from various sources. This pooled data can then be used for comprehensive meta-analyses, addressing questions beyond the scope of individual trials. Such an approach is particularly crucial in strengthening evidence for underrepresented groups in medical research, ensuring that findings are inclusive and representative of diverse populations.

Challenges in Data Sharing

Despite these benefits, the path to effective data sharing is fraught with challenges. A primary concern is the identification and location of relevant data sets. Platforms like the Infectious Disease Data Observatory (IDDO) address this by issuing Digital Object Identifiers (DOIs) for each dataset, facilitating data discovery. However, challenges persist in persuading researchers to share their data and ensuring its understandability across different research contexts.

IDDO’s Role in Enhancing Interoperability

IDDO plays a crucial role in enhancing the interoperability and reusability of data. Their curation process, which involves enriching raw data with international standards and terminology, makes data more accessible and understandable across diverse research contexts. This process is vital in fostering a collaborative research environment.

WHO’s Contribution to Data Sharing Guidelines

The World Health Organization (WHO) has been instrumental in establishing data-sharing guidelines. In collaboration with partners like IDDO, WHO has developed policies and technical guides that advocate for the global benefits of sharing research data. Their policy, which aligns with the FAIR principles (Findable, Accessible, Interoperable, Reusable), is crucial for ethical and equitable data sharing. This approach ensures that data can be used for secondary analysis without compromising personal privacy and facilitates the replication of studies.

Impact of Data Sharing on Research Visibility

Research has shown a 25% increase in citation rates for studies with shared data. This demonstrates that data sharing is not only beneficial for the broader community but also advantageous for data providers and users. It promotes transparency and accountability, completing the research cycle and fostering a mutually beneficial situation for all stakeholders.

Handling Technical, Ethical, and Legal Aspects

The WHO guide offers practical advice on managing technical, ethical, and legal aspects of data sharing. This ensures that even sensitive patient data is shared responsibly. Compliance with this guidance is mandatory for research funding from WHO, reflecting their commitment to improving health research data-sharing standards.

Implications and Future Directions

The shift towards data sharing in health research is more than just a procedural change; it represents a paradigm shift in how scientific research is conducted. By adopting these practices, the global health community is better positioned to make significant strides in understanding and addressing infectious diseases, ultimately enhancing public health worldwide.

Conclusion

In conclusion, the movement towards open science and data sharing in health research is a significant step forward. The collective efforts of organizations like WHO and IDDO, along with the intrinsic benefits of this approach, are forging a path for more collaborative, transparent, and effective scientific research. As this trend continues, we can expect to see more rapid advancements in health research, with direct benefits to public health globally.

References

• Bausell, R. Barker, 2021, The Problem with Science: The Reproducibility Crisis and What to do About It, New York, Oxford Academic, https://doi.org/10.1093/oso/9780197536537.001.0001
• Infectious Diseases Data Observatory (IDDO), 2023, Data Sharing, https://www.iddo.org/data-sharing
• World Health Organization, 2022 . Sharing and reuse of health-related data for research purposes: WHO policy and implementation guidance. World Health Organization. https://iris.who.int/handle/10665/352859