The future of your health data

Your health data usually belongs to someone else. If you go see a doctor and are diagnosed, the electronic record of that diagnosis is stored and could be part of a much larger anonymised dataset. If you're in the US, you may be one of the 180 million patients whose health insurance claims data are part of the MarketScan data from Truven Health Analytics. If you're in England, you may be aware of the government's plans to build a dataset, called containing the GP & Hospital data for the 53 million patients who live in England. If you use a activity tracker, such as FitBit etc., you're once again giving your personal health data away, which may or may not be sold in the future.

Naturally, one of the important applications of all these data are to improve human health, especially when it comes to medical researchers looking to understand how we get sick, and how we respond to drugs & vaccines in the real world. These data are also valuable to health insurers and healthcare providers when it comes to improving their services. 

Nearly a year ago, at TEDx O'Porto, I shared my radical vision of how 7 billion people could get paid for sharing their health data, as well as having full control over who can access that data. Many leaders in the healthcare arena have laughed at my dream, or have responded with silence. It tends to be patients & startups that get most excited at my ideas. That's understandable, as we are talking about big changes in how we collect health data, store it and sell it. These changes are not going to happen overnight, but I'm pleased to see that changes are happening faster than I anticipated. 

I read an article today in MIT Technology Review about a New York based startup, DataCoup. According to the article, "DataCoup are running a beta trial where people get $8 a month in return for access to a combination of their social media accounts, such as Facebook and Twitter, and the feed of transactions from a credit or debit card." Looking at DataCoup's website, it claims to be the 1st personal data marketplace. 

Interesting, the article, also says "The company also might offer people the option of sharing data from lifelogging devices such as the FitBit or parts of their Web search history." When I tweeted earlier today, DataCoup confirmed that incorporating health data is in their plans. 

The dawn of a new industry?


This news is extremely exciting for me, and gives me hope that 2014 is likely to be a turning point in raising awareness of how valuable our health data is. If you suffer from multiple diseases, and take multiple medications, your data may be more valuable to 3rd parties than someone who is healthy and not on any medications. Many entities currently profit from using your health data. Time for patients to share in that profit?

There is also a London startup called Handshake that is also a personal data marketplace. Their website states, "Handshake is an app and a website that allows you to negotiate a price for your personal data directly with the companies that want to buy it.". They appear to be in a closed beta at the moment. 

Then you have the concept of patient data co-operatives. Our Health Data Co-Operative is in the US, and has recently been recognised by the White House as playing a role in promoting "Data to Knowledge to Action". The founder, Patrick Grant, states, "Our Health Data Cooperative is built on the premise that Patients should benefit economically from access by third parties to their health information."

Over to Europe, and I recently came across HealthBank. A patient data co-operative based in Switzerland, but aiming to build a global secure depository for patient data. Their website talks of patients having "a HealthBank account,  to store, access, manage and share their health data. And users can earn financial and other returns on their health data, similar to receiving returns from a bank account."

You've heard of Bitcoin, the cryptocurrency that's hit the news? What if you could trade your health data for Healthcoins that could be used to pay for your healthcare or for healthy food? There is a guy in the Netherlands, Andre Boorsma, who has put forward the concept of Healthcoins. I'm curious - would this concept be tried in Emerging Markets first? 

What's the catch?

Exciting stuff, and we are entering a new era in the creation & use of personal health data. However, there are important hurdles to overcome. The first one is trust. The companies listed above have to build trust with the individuals who would be sharing data. Building trust takes time, unless you partner with an existing brand that is already trusted. Would you be more willing to use the services of DataCoup, Handshake, OurHDC, or HealthBank if they were associated with Amazon or Samsung? 

The second hurdle relates to privacy, security & governance. Do we have the technology in place to genuinely keep our personal data private & secure in these emerging platforms? Do we have the legislation (both country level & internationally) to fairly govern the sharing, management and trading of these data? There is also the thorny issue of obtaining informed consent. The vulnerable, such as a person with Dementia who may be given a Fitbit to wear, but someone else profits from their activity data being traded? 

Another issue is going to be accuracy, especially with health data that can be generated using wearable technology. Users are manipulating fitness trackers, as reported here. If you're a researcher buying access to aggregated data on Fitbit users, how accurate are the data? How representative will these data be of the general population? 

If we can trade our health data for economic returns, will this commoditization of our health data attract the attention of cybercriminals? 

What about Open Data? Some people argue that these new sources of health data should be donated into a commons, free for researchers to use for the benefit of humanity. 

What does this mean for you? 

Health data brokers - you need to be thinking about these trends, and how you adapt your company's strategy. If you don't, your future revenue streams are likely to suffer (or disappear!)

Healthcare providers & insurers - Are you ready for a world in which patients can choose who they want to share their health data with? 

Patients - Would you feel comfortable trading your health data for economic rewards? 

Pharmaceutical companies - How will this impact how you source data for clinical trials & observational studies? 

Startups - Immense opportunities (and pitfalls) ahead. If personal data marketplaces and patient data co-operatives take off, it could create a brand new industry. 

Policymakers & regulators - The world is definitely moving towards a personal data ecosystem where individuals can own, control and profit from their own data. Legislation needs to consider the rights of everyone involved with such a system. Will their be a special tax for those people who decide to sell their health data? 

[Disclosure: I have no commercial ties with any of the companies mentioned above]

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