The inclusion of access to PHD as part of the action areas of the Digital Single Market strategy from the European Commission exemplifies how important the ability to access, manage and govern PHD is. A survey to the American Federal Agencies done by MeriTalk also showed that PHD are increasingly part of health big data systems. The survey showed that collected data is being 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.
Nonetheless, access and use of PHD are constrained by issues around personal privacy and data ownership, informed consent of future use of those data, how data is shared and accessed and lastly, the quality of the data being made available. In many cases, existing public policies have not been able to keep up with the different emerging technologies collecting, exploring and even monetizing PHD. Many questions related to the roles, responsibilities and rights of patients, data owners and consumers in relation to PHD are also often left unanswered.
The Health Data Exploration project found that 78% of the patients they surveyed would “probably” or “definitely” donate their health data for research, being the decision based, for most of them, on the non-commercial or commercial use of data. Another survey in 2012 showed that 89% of patients wished to have their data used to help improve the care of others with the same or similar health condition. However, most patients also worried that their shared data would be used in detrimental ways.
The European Commission calculates that by 2017, not only 3.4 billion people worldwide will own a smartphone, half of these users will use health apps. In 2014, Rock Health invested $4.1 billion into mHealth companies because they sell apps and devices that automatically collect personal wellbeing and health data.
This shows how the pooling of a large amount of health data is a valuable commodity. The personal health data industry is calculated to be worth around $3.4 trillion. 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. Health-care records are highly demanded in the black market and they are worth as much as 60 times more than the data of stolen credit cards, because of the amount and detail of personal data they contain.
If you believe you have the answer to the future use & governance of personal health data, send us your proposal and become part of the solution.