There’s growing concern that our personal health data, genetic data, and even in some cases our physical cells, are being collected and sold for profit—often without our knowledge or consent.
As such, there is a growing belief that we, as individuals, should have the option to claim the right to own our personal health data and share it on our own terms.
Only by asserting that we own our health data will we gain the right to determine how that data is collected, controlled, and shared. When our ownership is recognized, we will establish our right to be compensated monetarily if we choose to share our health identity and data with third-parties for research, marketing, or other purposes.
Often without realizing it, people’s data and health identity are being collected and exploited – Source
Enabling mechanisms needed for new rights
To claim ownership rights, new enabling mechanisms are needed. This will likely require a mix of legal, technological and social mechanisms.
There are several laws in place that address health data privacy.
Those known best are HIPAA (the Health Insurance Portability and Accountability Act of 1996) and GINA (the Genetic Information Nondiscrimination Act of 2008). Both are aimed at protecting individual privacy when it comes to data contained in healthcare records or genetic data. Neither is focused on property rights. Both are limited in their application and do not address the current technological environment.
In May of this year, the European Union implemented its GDPR (the EU General Data Protection Regulation), which applies to any organization “offering goods or services to, or monitoring the behaviour of, EU data subjects.” Though GDPR is aimed at protecting the personal data of people in the EU, its effects are being felt in the U.S. as well. It has strict requirements regarding how a person gives and withdraws their consent for collecting and sharing their personal data, whether related to their health or not. It also has requirements for ensuring individuals can easily receive any data about them that has been collected and held by an organization.
None of these laws, however, address individual ownership rights, or related rights, like entering into contractual agreements to share personal health data—leaving a gaping hole that remains to be filled.
Beyond recognizing their property rights, legal mechanisms that support individualized contracts will be needed for people to be able to control access to and receive compensation for their data – Source
With the growth of digital health and cloud computing, we’ve seen a dramatic increase in the amount of personal health data that is being generated, stored, and shared.
Right now, most of this data is stored in silos. Each source of data seems to have its own repository. Each of us has data collected and stored in a number of different places.
How do we bring our individual data together into a single reliable source? Or how do we catalog all our data in a way that makes all of it easily accessible?
Historically, the approach would be to build an enormous master database. This is, at best, problematic. Large databases require a lot of resources and are vulnerable to data breaches.
Decentralized, technological approaches to data management that don’t rely on hierarchical relationships are being used to support individual access to and control of their data – Source
Today, people are looking to blockchain as a solution. By building a ledger of health records, the blockchain can enable access to those records in an anonymized manner and vouch for the integrity of those records. This makes healthcare data an especially good candidate for blockchain applications.
Bitcoin blockchain has successfully been implemented to manage micropayments. In this way, blockchain can also enable individualized contractual agreements between a person and the organizations to whom they share or sell their data.
Social contracts provide the underpinnings of how our communities operate and why they are stable. These collective understandings are based on social consensus, or agreements, that have been built up around things like what is valued, which behaviors are acceptable, and when our responsibilities should go beyond our immediate self-interest.
Whether we recognize it or not, these social contracts are the basis of our laws and regulations. Among the most obvious examples are the US Bill of Rights and the UN Universal Declaration of Human Rights (UDHR). But every law and regulation at every level of government is, ultimately, a reflection of the social contract held among the citizens of that community.
For some, the call is not just for new rights, but also for a radical, decentralized, people-based system to establish those rights – Source
For any new right to be widely-accepted, there needs to be a social consensus that supports it. This mechanism is critically important when facing a change that has the potential to undermine social stability, such as when establishing new ownership rights related to resources already seen as valuable.
Healthcare entrepreneurs foster enabling mechanisms for individual rights
Healthcare entrepreneurs are recognizing that the current state of how individual health identity and data rights are managed is less than ideal. Some see the inefficiencies of current practice and point to how it slows down the process of developing and approving new therapies. Others see individual rights as central to patient engagement. Still others question whether the lack of individual property rights surrounding an individual’s health identity and data is just.
To address these failings, entrepreneurs are bringing new solutions to market. In one form or another, all are aimed at establishing a new approach to storing, sharing, paying for, and capitalizing on personal health data for the greater good. Each directly addresses one or more of the enabling mechanisms needed to establish, enable, and support individual ownership of health identities and data.
Here are a few examples of how these companies and their leaders are working to foster a new social contract around our personal ownership of our health identity.
Embleema Health launched a health records blockchain aimed at giving people complete control over their health data.
CEO and founder Robert Chu summed up their mission as giving patients back the ownership of their data and securely connecting all the major healthcare stakeholders (i.e., biopharma, hospitals, doctors, and patients) through the use of blockchain.
While working at the healthcare IT and research firm IMS Quintiles (now IQVIA), Chu recognized the bottlenecks created when using established methods to gather and analyze health data. Current methods remove the patient from direct involvement in the process. They also create time lags in the development and approval of new drugs that Chu believes can be shortened through the direct involvement of patients and the application of digital technology.
He sees giving more power to patients as one of the most striking effects of the digitization of healthcare. When asked about what positive patient outcomes he expects will result, Chu points to more efficient identification of, and response to, adverse events, like discovering drug side effects.
Calling its app Patient Truth, Embleema Health is using blockchain technology to address the failings that Chu identified.
MintHealth launched a healthcare record blockchain that includes micropayments through the use of tokens.
Its goal is to build a “decentralized health platform that aligns healthcare stakeholders around the shared goal of patient empowerment and improved clinical outcomes, at lower costs.”
The first healthcare problem MintHealth is focused on is engaging patients in their care in a way that will help improve health outcomes while lowering costs.
CEO and co-founder Dr. Samir Damani sees blockchain technology as being able to solve these challenges. MintHealth designed its blockchain solution to enable a self-sovereign, secure, and free-flowing health record. Additionally, Damani sees blockchain as an instrument of change for patient behavior by providing individualized education, self-tracking, and financial incentives.
Through its Vidamints app, people can:
- Create a self-sovereign health record and unique identifier
- Manage seamless and secure transfer of their data
- Earn digital tokens by proactively engaging in positive health behaviors
Hu-manity.co has perhaps the most radical approach to individual health identity and data rights.
Declaring that “our inherent human data is bought and sold in a human data marketplace without being respected as our property,” Hu-manity.co frames the lack of health identity and data property rights as a humanitarian issue that blockchain can help address.
In his TEDx Talk, CEO and founder Richie Etwaru argues for a 31st Human Right that establishes that “every human being owns their inherent data forever, and said inherent data is categorized as property.” He goes on to suggest that this, and subsequent, human rights be established through community consensus using a decentralized, technological platform, i.e., blockchain. This is a radical departure from the centralized, institution-based approach used to establish the thirty human rights current recognized under the UDHR.
Hu-manity.co’s solution is threefold:
- Declare Human Right #31
- Build a blockchain that will provide a secure platform for negotiating, consenting to, and contracting access to individual human data, including your health identity
- Claim this new right by using its smartphone app to access and engage with their blockchain
Balancing individual rights with the potential for a greater good
The discussion of individual health identity and data rights has moved beyond preserving privacy to establishing property rights.
The rallying cry of proponents of individual data rights: You should have a choice – Source
The hope is that blockchain technology can enable a new approach to collecting, storing, and using the data that makes up your health identity – one that honors the privacy and property rights of individuals while also supporting the access needed to develop more effective and economical pharmaceuticals, treatments, and healthcare.
We are at an early point in this journey to rethink access to personal data and claim personal ownership rights. Blockchain appears to be a strong, enabling technology. But as with all revolutionary change, the path ahead remains unpredictable.