The End of Business as Usual. Reinventing Access to Health Data with Blockchain. Turn on the Light PLEASE!

November 13, 2019
November 13, 2019
Fátima Sanz de León

Health data has been described as healthcare’s “oil”, “gold”, “currency”, “backbone”, “blood”. Whatever the characterization we decide to use to describe health data, it is indisputable that health data is an essential ingredient to attain any health objective, be it from the perspective of the patient or that of any health institution and society as a whole.

The digital era has given rise to a tsunami of health data opening a wealth of opportunities but also introducing many challenges. Blockchain technology is perfectly positioned to help us address many of those challenges most importantly those related to data governance, ethics, and fairness in the distribution of gains from the health data economy. Equally important is blockchain technology’s potential for helping us unlock new opportunities for collecting the health data we need to address the health objectives we aim to attain.

HIT Foundation is a pioneer in recognizing the power of blockchain technology to address these challenges and tap into new opportunities in the health data ecosystem. In 2017, a group of visionaries and innovators covering multiple disciplines including professionals in technology, blockchain, data scientists, health, medicine and legal came together with the common goal to reinvent access to personal health data and reshape the health data economy, ultimately improving health for all.  

This meant applying blockchain technology to build a platform for the sharing of health data without collecting or storing any of that health data. This aspect of the platform is probably it’s strongest value proposition.

The HIT Team’s mission is to activate health data where and when it is most needed by engaging healthcare actors on a platform that provides trust, transparency, fairness, and due consent. This involves leveraging blockchain technology to empower everyone simultaneously, those who provide personal health data to advance their own health condition and those who are in need of that health data in order to advance medicine and global health. 

What does this blockchain platform mean concretely for its stakeholders:

For patients, it means: 

  • Empowerment by enabling them to participate in improving their own health and be part of the larger ecosystem that supports advances to their health condition
  • Choice by allowing them to decide who collects their health data and for what purpose
  • Compensation by providing them a tangible reward for their data and their effort to share it
  • Affordability of health services by providing them with the option to reinvest their reward in their health

For researchers, healthcare providers, international organizations, life sciences in general, it means:

  • Access to much needed personal health data, first hand, to advance their health objectives. 
  • Protection from illegal or unethical claims about their collection and use of a person’s health data by obtaining first hand, informed, unambiguous consent from them
  • Incentives to motivate their targeted population in novel ways so that they are ready to share their health data 

For society as a whole, blockchain technology is a tool with the potential to reshape an obscure health data economy by shedding light on this blurred business flooded with health data breaches and scandals. The health data economy is well known for being a very lucrative business. The problem is that, until now, the distribution of gains from health data have not been fairly distributed. One question arises, Is regulation alone a credible deterrent against all this? Or will it need blockchain technology too? 

Understanding how blockchain technology can attain trust, transparency and incentive alignment in the world of health data is arguably the first step. This could open up a pandora box of opportunities for fixing inherent issues in the collection of personal health data. 



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