What will we do with all this data?

Posted 16th April 2018 by Jane Williams

The amount of data we are creating every day has increased exponentially to match the rise in use of smart and connected devices. The internet of things has connected every aspect of our lives to the digital realm: most of these devices operate by tracking your habits, movements, preferences, voice, and more, then logging those habits online. Specifically, the collection of health data has become abundant, because most people now have or wear some sort of device to track daily patterns, steps, cycles, and more. Even our phones often default to track these things for us, whether we choose to enable the function or not.

The problem with all this data

It is unprecedented that we have mass amounts of permanent information and data captured about our daily life. We’re not sure what this will look like in the long term, but the current state of issue is that there aren’t many rules about how personal health data can be collected, tracked, and shared.

Yet personal data is becoming the world’s next most valuable asset, because many big companies are already collecting and buying our habits and online preferences for their own marketing, product development, revenue, and business. Companies are making a profit from the data we all generate as a byproduct of living a digitally connected life. This is unfair to the individuals generating data and we appear to be headed toward a dystopia where big companies run and own all that we generate and create. We see this already popping up in media: if you snap a photo on Instagram, technically you do not have full ownership rights to that photo. Let’s not go down a path toward big companies owning and controlling every move you make too.

If we look back at the history of property ownership, the anarchic systems of a Wild West scenario didn’t last very long. Systemisation of land titling and clarification of ownership claims were imperative to enable new communities to thrive; property rights were established and towns, cities and farms could more easily make profit from the land they could rightfully claim – and transfer, sell, rent, and loan too. The same infrastructure was needed to regulate the ownership rules and rights of knowledge and intellectual property. During the Industrial Revolution, the systemization of patents, copyright, licensing of media rights was established to clarify fair use, copyright, royalty payments and other revenue streams.

Currently, in the US, transferring land, selling a patent, issuing royalty payments, or drafting a license agreement for media rights are all simple steps because they are contained within a successful and enforced property system. We now have an established precedent for the rights to these assets – land, ideas, knowledge, media – the things that were once in a state of unmanageable, unlawful, disorganized and inequitable use to the common person, because ownership rights were clarified and set within a property system.

Bring in the blockchain

Now that we are in a new era of digital information and data, we need to bring the systems that worked for us in the past into our current state and enable the clarification of property rights to extend to digital assets and health data. We need a property system, to record and organize and allow the safe transfer of this newly valued asset, specifically health data.

Blockchain technology will change the infrastructure of many industries, for many reasons. A blockchain can provide more security and efficiency than any systems we have to date. There are many technical intricacies that make blockchains an improvement over old systems, a few simple topical reasons particularly helpful for recording health data include:

• A blockchain is already a ledger – it can function like the property systems of old, in that it is in essence, a ledger. Similar to any patent office that records IP ownership claims, a blockchain that records health data, will log each new entry onto its protocol, and track when that data is transferred across the network.
• It provides greater privacy of information – the value of a blockchain exceeds traditional ledgers because a user can decide which parts of their entry can be made completely public, completely private, or in the case of transactions, viewable to specific parties only. The transaction may look public, but the metadata within the transaction may contain valuable information only privy to the chosen recipient who holds the keys to view it. This means that anyone recording and transferring their health data across a blockchain will have greater control over the privacy of their information. A blockchain is also tamper-evident: any users can see where their transactions have moved across the network, making fraud very easy to detect.
• Unlike the digital storage options we use currently, the ledger of a blockchain is viewable to everyone at any time. Health information needs to be updated often and can be found in the hands of many participants at once. Without compromising the integrity of private, sensitive information (it’s still in the metadata of any transaction or record), anyone can see the transfers that have taken place between participants at any time. This is possible because of the decentralized network of computers that help run the blockchain and record transactions.

What will we do with all this data?

To give one specific use case of how this property system can be put into play, Bitmark, has built a mobile app for the UC Berkeley researchers to use to retrieve the personal health data created and stored in your phone, to help conduct studies on any particular subject.

How it works:

• A user signs up for the Bitmark data donation app. They input their user information, including information that will aid the studies they choose like gender, age, health status, etc. No emails, phone numbers, or personally identifiable information is stored in the Bitmark system – occasionally it might be shared directly with the researcher, only if that researcher requests it and the user consensually agrees to share it.
• The user browses the research studies on offer and chooses which one they would like to participate in.
• Each study has its own set of intro screens and consent forms. All studies will be vetted by the IRB and each researcher will be responsible for the data they receive from the app.
• The Bitmark app connects to the information on your device that will be required in the survey, such as photos of food you eat, step counter, sleep cycle tracker, or other apps you run.
• Each time (most often daily) the UC Berkeley researcher wants to collect information, they will request from you what they seek.
• The individual gives consent to share their health data every time it’s given. This is an unprecedented way to allow the safe, consensual transfer of sensitive personal information. Most apps only ask for permission once, Bitmark won’t allow any transfer of info until each time permission is actively granted.
• Each researcher can now collect the data they need for their study. The mobile-friendly manner in which data is collected unlocks more opportunities for information that was until-now hard to unlock and uncover.

Sean Moss-Pultz will be speaking at the Blockchain in Healthcare Congress in May. Find out more by taking a look at the agenda.

Sean Moss-Pultz is co-founder and CEO of Bitmark Inc. You can read Bitmark’s blog here.

Tags: blockchain, data, data storage, healthcare, ledger, security, technology