At the source

Hu-manity.co eyes next-gen human rights: 'Data will be the currency of the future'

By Melissa Fassbender contact

- Last updated on GMT

(Image: Getty/solarseven)
(Image: Getty/solarseven)

Related tags: Data, Clinical research, Clinical trials, Regulation

Hu-manity.co is taking on the human data marketplace with its mission to establish a 31st Human Right: Legal ownership of human data as property – a shift that could help improve clinical research and increase transparency, to begin.

Hu-manity.co is an organization developing human rights and sovereign laws in a decentralized manner on blockchains. According to the NJ-headquartered company, it is the first and only of its kind.

The company’s vision is a world in which the next generation of human rights and policies are developed from “a balance of centralized power and decentralized technologically empowered communities.”

The mission is to create a 31st​ Human Right: “Everyone has the right to legal ownership of their inherent human data as property.”

The #My31 movement is calling for the addition to the Universal Declaration of Human Rights​ (UDHR), which was proclaimed​ by the United Nations General Assembly​ in Paris on December 10, 1948. 

“Property is powerful. Privacy laws are difficult to agree upon and enforce, while property is clear. If I own something it is mine to lease, sell, donate or even keep to myself,”​ said Michael DePalma, founder, president, and COO, of Hu-manity.co.

Who owns your data?

The issue of data ownership has come to a head following a deluge of privacy concerns across all industries. Pharma among only one, most recently coming under fire following the partnership between the at-home genetic testing firm 23andME and GlaxoSmithKline (GSK).

Read more: Why patient counseling is an essential component of genetic testing

Hu-manity.co founder Richie Etwaru addressed the partnership in a five-minute video (below), in which he said, “The world should be outraged by the 23andMe announced partnership with GlaxoSmithKline.”

The company has developed the #My31 app, which it says will “empower people to manage and control how, where, and if their data is used by third parties.” ​Additionally, the app provides businesses relying on this information access to “explicitly consented”​ data.

The company is using blockchain and other technologies to secure data and see that users receive “fair market compensation”​ for their information.

“Data will be the currency of the future,”​ DePalma told us.

To learn more about the company’s goal, how change could be affected, and the role of technology, we caught up with DePalma and Dr. Dan Karlin, a former executive at Pfizer and new Industry Transformation Officer (ITO) at Hu-manity.co.

OSP: Why was Hu-manity.co established?

Michael-DePalma-2x_v3

Michael DePalma: ​We founded Hu-manity.co to address a growing, but somehow little recognized imbalance in the market. Facebook is really just the tip of the iceberg and the time is now for a solution.

The human data marketplace represents an estimated $150bn to $200bn annually and it is growing exponentially.​ Inherent human data is not just browser and social media data. It goes way beyond Facebook or Google. It includes geospatial data, driver and vehicle history, consumer spending habits, medical history, travel, dining, recreational habits and beyond.

Right now, this data is bought and sold in a global marketplace, without consent, authorization, consideration, or compensation of the individual.

This is a violation of a basic human right. The only one who should be able to control how your personal digital data is used is…you.

OSP: Looking to the pharmaceutical industry specifically, why is this an area in which concerns of data ownership are exacerbated?

DePalma: ​In a very real sense, data is our life blood in the pharmaceutical industry. It’s how we make every decision. The end goals then are to preserve or frankly, enhance our relationship with data.

The data and research suggests that people are actually much more likely to want to engage with the industry than perhaps we had realized.

By giving our customers, patients, consumers, a real seat at the table and an actual relationship with the industry, we can create actual collaboration.

Being patient-centric is a marketing phrase unless you actually make the patient the center of all we do.

OSP: Would you say the industry currently views patient data as the patient’s property?

DePalma: ​One of the simplest ways to understand the industries posture on this question is air quotes. That is, why is it, when someone from industry is asked if the patient owns their data, the response is “Yes, the patients (air quotes) ‘owns’ their data.”

It’s indicative of the fact that we really haven’t thought of patient data as real property, and as an industry, it’s difficult for us to change our thinking.

However, when we look at the socio-economic impact of patient data as property, not to mention, the potential to help us address and improve some of the intractable problems we face, such as clinical trial recruitment, trial failure, and frankly, the way we as an industry are viewed and trusted, you realize that this type of shift is actually beneficial for all of us.

OSP: If not, how will this change?

DePalma: ​There is no question that there will be those in the industry who fight this natural evolution. History has shown us this repeatedly in all evolutions. It’s easy to take a fear based view of this evolution and show uncertainty, doubt and even fight the idea.

Ultimately however, this paradigm shift invites existing industry players to evolve in a more trusted and transparent way. To change the relationship we have with all parties to one of trust and transparency. In fact, we expect the industry to grow. All based on a simple shift in our understanding of where the data value chain actually begins.

Plus, explicitly consented data is very valuable and has never been offered to the pharmaceutical industry. This type of data has the benefit of driving innovation to bring better drugs to the market faster and with less cost. We truly envision a world where both the patient (the individual) and pharma (the business) can co-exist and thrive.

OSP: How does advances in technology play into this?

DePalma: ​Technology plays a critical role in not only the capability we’re describing, but also the timing of this evolution. As technology advances, we expose capabilities we didn’t have available earlier. For example, the adoption of Blockchain gives us the ability to better address some of the concerns we have with not only traditional systems, but to expand and enhance the way we can meet the intent of law.

The idea behind data ownership and property, as well as managing consent and authorization on a Blockchain, coupled with a consumer mobile application, gives the industry a way to more directly engage with their customers’ desires on their data for example.

In the case of our use case, we’re using Blockchain in a completely new way, not focused on quantitative value, such as the value or transactional history of a currency, but to generate and leverage consensus on HOW something should work, but in a meaningful way. 

OSP: How will using “explicitly consented data” help the pharmaceutical industry?

Dan-Karlin (1)

Dr. Dan Karlin:​ The industry spends lots of time and money attempting to devise insights from currently available de-identified real world data sets that are built from data consented in the loosest possible way. These insights have been few and far between. Aside from the ethical issue with this, there is a real data issue.

The data are sparse, they may be repetitive or represent the same patient’s data as multiple patients, there are often inaccuracies in it, and in the process of de-identification, key information is often lost, such as dates.

With explicitly consented data there are mechanisms to correct each of these deficiencies and access data that more closely represents the real world in all of its complexity.

OSP: Specifically, how will this help advance the industry’s use of clinical trials data as well as real world data?

Karlin: ​In our current state, clinical trials data is especially valuable because of a number of factors. Of course, there is the element of randomization and controlled variables, which is not going to change but it also represents a state where there is confidence in the data because it comes from controlled conditions and has a known provenance and has followed verification procedures.

We believe that with verifiable, complete, consented data available, these data will approach the usability of clinical trials data and for certain purposes be analyzable alongside relevant trials data. This ability to pool data for large analysis builds value for all existing data sets.

OSP: How will all of this translate to more efficient research?

Karlin: ​The more we are able to glean insights on diseases and their treatments outside of clinical trials, the better those trials will be when they do happen.

There are direct impacts too, one way to be more efficient in some diseases and patient populations is driven by the ability to construct high quality synthetic control arms, that is use high quality historical data to use as the control comparison in trials.

High quality real world patient supplied data can be used for exactly that.

OSP: What will you do in your role as the new Industry Transformation Officer?

Karlin:​ My role is to serve as a partner to executives at pharmaceutical companies who want to be on the leading edge of using explicitly consented data. I will help them to explore the potential weaknesses in their current patient data efforts and build concepts for how these efforts can be strengthened through the early adoption of ethically sourced and consented data.

The precise nature of data use will vary from company to company but there are broader ideas and opportunities that will be common across the industry. I get to help everybody do better by finding best practices and helping industry champions realize them in their own companies.

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