The 28th of February marks the 14th edition of the international awareness campaign for rare diseases. It is estimated that 300 million people worldwide are currently living with one of the 6000 rare diseases that have been identified.
Reusing health data offers opportunities to advance scientific research and improve health outcomes. This potential can only be fully realised through combining and sharing biomedical data. This is particularly true in the case of research on diverse and rare diseases. Patients suffering from them are geographically dispersed and in low numbers. Sharing data and combining health records could create knowledge and avoid duplicated studies, benefitting patients care.
Rare diseases represent a paradoxical example of the opportunities and challenges of reusing health data. On the one hand rare disease research has a greater need to harness the potential of data reuse, but on the other hand the protection of patients' interests can be more complicated to ensure. Patients can be concerned about questions of data security and misuse, and fear that data sharing could lead to discrimination.
This is why we need to understand patient needs to ensure their participation and engagement in research. Engaging patients living with a rare disease can also help to improve safeguards, reduce risks and increase the benefits resulting from the reuse of their health data.
*Broad consent: consenting to the development of research in a pre-defined and broad field without the necessity to re-consent
How would you like to be involved in health data reuse?
Follow Robert and his health data on their trip. How does Robert's health data move along with him? And how can his health data be reused?
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