Your Data, Your Title: Our 5Q With Richie Etwaru

Richie Etwaru is man on a mission. Specifically, he wants ownership of our own data as a new Human Right to join the other 30 Human Rights outlined in the United Nations Universal Declaration of Human Rights. He is co-founder and CEO of Hu-manity.co, a company behind a movement which is seeking to help bring this about, and to operationalize such ownership.

Richie has extensive background how our data is collected and used at the intersection of technology and policy, having been Chief Digital Officer at IQVIA, as well as serving in senior positions at UBS, Barclays, and Prudential Financial. He is very familiar with the start-up life, having founded and run Fusion Records and License Monitor early in his career.

He also manages to find time to teach Blockchain Management at Syracuse University, where he is an Adjunct Professor, has three TEDx talks, and has authored multiple books.

Richie’s parents, also educators, have described him as a “preacher for business” due to his evangelical efforts, and, if you’ve seen any videos or photos of those, chances are he’s smiling.

1. Data privacy is a hot topic, with companies like Facebook and Google under the spotlight and with new laws coming into play, like GDPR in Europe and the California Consumer Privacy Act. Are these kinds of laws and regulation necessary but not sufficient? If so, why? In a digital world, how much of the data privacy genie is irrevocably out of the bottle?

I remember the first time I signed on the AOL, I discovered I already had mail, and I knew instinctively that privacy as we knew it was over. We’re sort of living in a post Homo Sapiens era, the era of the of Homo Notitias — the information man — and we need to rethink what privacy means as we welcome our digital self into our analog world.

We don’t have the luxury of thinking about privacy like our parents did. It used to be about not wanting our neighbors or our village to know things about us, but now it’s the world. You can close your drapes but still have Alexa listening.

But we can’t say it is too late to do anything. We have to think about the socioeconomic implications of what happens if we don’t regain control of our privacy; we might only be left with the option to redefine privacy. Corporations are starting to know more things about us than, perhaps, we do, and they can use that information to manipulate — or even domesticate — us. We need to have choices about what they might know about us and how they might use what they know.

We need to take control over a bi-product of our existence. We have to come to an agreement between consumers, communities, corporations and countries on who owns human data, and what does that mean.

This is not new. Until the 1600’s, our creativity was not considered property of which their creator had ownership. Claiming those intellectual property rights subsequently had huge impacts on commerce and innovation. We believe that the long-term implications of claiming property rights of our data will also have massive implications.

2. There are several other companies that are also focusing on ownership and control of personal data, but Hu-manity.co stands out with its proposal to make it the 31st Human Right. Why did you take this approach? Is it aspirational, or do you believe the UN will formally adopt it?

Most big changes start aspirational.

We anchored what we’re doing in Human Rights because they transcend countries and corporations, as so does our data. Some argue that perhaps we need to rethink Human Rights in general for the digital world.

Human Rights assert a positive freedom. Your data is yours, and you can do what you want with it. Asserting ownership of our data as a Human Right puts it at the top of the stack of agreements we share as a species, informing government policy and laws, and corporations.

Short of making it the 11th Commandment, having it be the 31st Human Right seemed the best option to create awareness and discussion on this historically important topic.

3. Right now, it seems everyone but the individual owns the data, and the organizations with that data often don’t want to share it. How do individuals obtain their data, and assert ownership of it? What will that ownership bring people? How are conflicts of ownership — such as with health care professionals — resolved?

People talk about data as the new oil, but that’s not quite right. Oil is rivalrous –if I have it, you don’t — but data is non-rivalrous, since multiple people can each have the same data. The issue isn’t who has it but who owns it and hence has choice and control around its use.

Hu-manity.co is not about collecting data. We empower people to claim property ownership rights of their data, starting with healthcare data in the US. It’s not about actually having the data but about being the consent and authorization backbone (CAB) for data. We think of ourselves more as legal tech than as data or information tech.

Consumers use our app — #My31 — to create a title to one’s data, generating a unique title ID of ownership. The intent is that the organizations currently holding one’s data — like EHR vendors in healthcare — watermark that data for ownership with the title ID, so that anyone they sell or give the data to recognizes that the individuals behind the data have asserted their ownership of it, accompanied by their consent, authorization, and monetization preferences.

There will be questions about the validity of the titles and the consumer’s property ownership, and all companies aren’t actively recognizing the title ID, but the companies that do recognize that this is a matter of business ethics.

Those that recognize the title ID do it either because they want to be on the right side of history, or see that it is to their financial benefit to work with consumers in a form of fair trade. That’s because, if they do, the quality of data should improve, and the use cases for data should increase.

4. Healthcare data is a major focus of your efforts. What makes it so important? Is obtaining it and asserting ownership of it more or less difficult than other types of personal data? Why?

Healthcare is different in important ways. With Facebook or Google, for example, you use their services for free, and in return they monetize your data. In healthcare, though, you’re paying for the services that generate the data, and then third party business partners of healthcare providers scrub and sell that your data into a supply chain, to eventually be consumed by pharma.

Those third parties typically operate under a variety of restrictions, such as HIPAA and keeping the data de-identified. We believe by working with the consumers they’ll get improved data quality and be able to use it in more impactful purposes to improve healthcare.

By pooling people together, we’ll be able to leverage scale, and help consumers have choice, control and the optionality of compensation over our data. We’ve already had 15,000 people — from 70 countries — voluntarily download the app, with over 6,000 of them filling out their consent, authorization and marketplace data listings, and we haven’t even started marketing. We’ll be doing that shortly and expect we’ll have roughly half a million users by the end of the year.

Healthcare professionals will still have access to, and use of, data they are involved in creating, but monetization of that data will benefit the consumer rather than third party data brokers only.

New Hampshire has already recognized patients’ ownership of healthcare data, and Oregon has introduced a state bill with bipartisan support doing the same. That’s just the start.

5. You are a big proponent of blockchain, especially for these purposes. What makes blockchain the right mechanism for data ownership and management? What are its drawbacks or barriers?

First, blockchain is not the star of our tech stack; it’s just a strong point guard. Second, anything you can do with blockchain you can do without it — it just might be harder or more expensive.

The first problem here is that you’ve got large, high fidelity data sets with numerous parties looking at it. That creates a complex problem, which blockchain simplifies. Large numbers of nodes are feasible.

The second problem is the notion of consensus. Humans often aren’t great at agreement, which is often why we have government. Blockchain is built to document agreement, and, in this case, it allows us to have consensus on consents and authorizations.

That being said, the current blockchain design patterns of the software and hardware don’t scale well. To bring this vision to fruition we need faster chips, faster networks, fatter pipes. It’s like building a 777 while the runways are still being built, and expecting they’ll be done when we’re ready to land. We’re betting that they will be.

Bonus question: Fusion Records seems like the outlier in your career — what’s the story?

[Laughs]. I was in my 20’s, had just left a Wall Street job, and was trying to figure out what was next. I had a cousin who was into reggae music, and he convinced me there was a market for Caribbean music. I saw an opportunity to pool small record labels into a broader one featuring it. I got to work at night and hang out with musicians and producers. It was like a yearlong bachelor party!