Transforming health through
the governance of personal health data


Transforming health through the governance of personal health data


Personal health data is increasingly becoming a key issue at global scale and it is understood as being central to the sustainability of the public healthcare systems. In addition to this, personal health data holds an enormous potential when it comes to the acceleration of health research and influencing the priorities of that same research. The objective of this challenge is to consider different models that can enable the use of personal health data in a proactive manner and find solutions that can emphasise and support the collective governance of personal health data.

The challenge

The ability to access, manage and govern personal health data is increasingly becoming a key issue worldwide, being the provision of access part of the action areas of the Digital Single Market strategy from the European Commission. This data is understood as central to the sustainability of the public healthcare systems, but it also holds an enormous potential when it comes to the acceleration of health research and influencing the priorities of that same research. The objective is to enable the use of personal health data in a proactive manner by offering patients and citizens the possibility to influence and contribute collectively to the healthcare research agenda through the control of how and for what their data is used.


Why it matters


Personal health data is crucial for the healthcare system. A survey to the American Federal Agencies done by MeriTalk showed that personal health data is increasingly part of health big data systems. Collected data is used by 35% of those enquired to improve patient care, 31% use it to reduce care costs, 28% to improve health outcomes and finally, 22% use collected data to increase early detection.

In 2014, Rock Health invested $4.1Bn into mHealth companies because they sell apps and devices that automatically collect personal data.

The European Commission calculates that by 2017, not only 3.4 billion people worlwide will own a smartphone, half of these users will use health apps.

The pooling of a large amount of health data is also a valuable commodity. As the Scientific American indicates, the dominant player in the medical-data-trading industry is IMS Health, which recorded $2.6 billion in revenue in 2014. Pfizer spends $12 million every year in health data purchasing.

PatientsLikeMe found that 95% of adults would be willing to share their health data to help doctors improve care. However, 76% of these also worry that their shared data may be used in detrimental ways.


What we are looking for


Personal health data and its commercialisation is a hot topic that is creating new challenges for healthcare providers and organizations that are taking innovative approaches to address their research needs and economic return in exchange of data. However, personal health data is very sensitive and citizens increasingly demand more access and control to how this data is managed and used. More precisely, the impact of a collective approach to the government, management and sharing of health data can be transformational to what is prioritized within health research.

Recent technologic developments like blockchain and smart contracts are offering safe and dynamic governance rights that allow to manage data at a large scale and through a collective effort.  These developments mean that personal health data can be managed, shared and accessed by multiple parties under a series of pre-defined conditions and without compromising data integrity and security. This challenge aims to find solutions that can emphasise and support the collective governance of personal health data.


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