As Digital Health evolves, there will be more data that can be collected about you and your health—and the collective value of that data is of increasing interest—not just to medical researchers, but to anyone with an interest in health.
This question is aimed at you. The health data I’m talking about covers a variety of sources and settings. For example, there could be data collected about you when you have:
a) Visited a doctor’s office or been admitted to hospital
b) Filled your prescription at the pharmacy
c) Claimed on your health insurance
d) Used a health or fitness app
e) Searched for health information online
f) Used a sensor of some kind to monitor your physical activity/sleep etc.
g) Had a direct-to-consumer genetic test
By using these products and services, you’re likely agreeing to terms and conditions where your health data could be aggregated with data from other users, shared with 3rd parties, and used to improve services, marketing or medical research.
There is immense value to be gained when your data is shared, especially when it comes medical research. At a basic level, the reward for sharing your data may be knowing that you’re helping to contribute to scientific efforts to better understand a particular disease or to help in the journey of developing a new treatment. Just look at the recent announcements of ResearchKit by Apple, where your iPhone can be used to collect data about you to feed into medical research, or Open Humans, where you make your data a public resource. Even before these came along, you had data sharing platforms such as DataDonors.
As Digital Health evolves, there will be more data that can be collected about you and your health, and the collective value of that data is of increasing interest, not just to medical researchers, but to anyone with an interest in health. “Is Big Data the next wonder drug?” was the name of a session at the recent SXSW event. In some respects, “Big Data” is already with us, we already have corporations such as Symphony Health which have health data on 274 million patients in the United States.
Your health data is an asset
When I speak to people, and ask them how much they think their health data is worth, the look I get is usually one of confusion. They normally reply with statements such as, "Who would be interested in my blood pressure readings?", or "Who would be interested in how much I walk every day?" Whilst we view our cars and homes as personal assets, we don’t really view our health data as a personal asset. Yet many entities do view our health data as such.
An article by Dr Beth Seidenberg, concludes with:
But if we truly want to enable the breakthroughs and behavior changes that will transform our health, we must be willing to share our most personal asset: the data about our lifestyle, state of health, and disease.
Seidenberg works at a Venture Capital firm in Silicon Valley. Consider for one moment, that the prevailing business model in Silicon Valley is to monetize the data, i.e. data about you. Seidenberg even reminds us about the hugely lucrative commercial opportunities within Digital Health by referring to your health data as your most personal asset!
Maybe you think your data won’t be safe if you share it? Or maybe you don’t want to share your data because it might be used against you one day? Both are valid concerns.
An article by Ben Heubl and Nick Saalfeld, implores us to get off the privacy train and share our health data, because it will make us all healthier. The article is skewed, because it’s primarily highlighting the benefits of sharing your health data (for free). In fact, one sentence states, “Privacy freaks might want to stop reading about now.” If you have legitimate concerns about sharing your health data, does this tone of voice help or hinder? I’m not convinced that shaming you into sharing your health data is the right thing. Not only is it patronizing but it’s not conducive to allowing you to make an informed choice.
Now, perhaps a more equitable value exchange would actually lead to more people sharing their health data. There is a really fascinating OECD paper from 2013, exploring the economics of personal data, which mentions:
Users may be willing to share even more personal data if they feel they have more control over how it is used and received a clear economic or social benefit for sharing.
So how much is your health data worth to you? What’s fascinating is that a recent survey of British people found that 49% would only sell their personal data for £1 million or more. In fact, 82% of respondents would want at least £1,000 for their data. Obviously, the survey was about all types of personal data, not just health, but it makes you think about the increasing awareness about the value of data.
I came across an article by Andrew Conry Murray, entitled, “Who should sell your data? You Should!” Murray states, “I propose the creation of an online marketplace that allows us to sell the rights to our Web activity to the highest bidders.” He even mentions how adding your feed from your activity tracker would allow you to charge a premium to the buyer.
If selling your health data helped you to pay your medical bills, rent or mortgage, surely you’d jump at the chance? All you need is somewhere to sell that data, right? [Note: By selling your data, I mean selling the right for others to access and use your data].
We already have data marketplaces, which would allow users to sell their data, including one being designed specifically for health data. So what’s happening with them? Why are they not well-known, like eBay? Here are a few examples I've come across, and I managed to reach out to some of them to get an update.
Handshake (UK) – Their last blog is from 2013, and it doesn’t appear they ever launched.
datacoup (US) – “We have ~25k total connected accounts, tons of data, and lots of merchants lining up to purchase data. Our next big step is focusing on a strategic partnership that will vary the compensation going back to users.” - Matt Hogan, CEO & Co-Founder
healthbank (Switzerland) – “We are building the first citizen-owned health data transaction platform, which will provide monetary and other rewards to users who expressly consent to share their data for research. healthbank believes data-sharing users are entitled to compensation for the value of their health data. Providing incentives for citizens to share health data will help platforms compile large enough data sets to augment hugely expensive and often incomplete clinical trials, thereby potentially lowering the cost of resulting therapies.” - Jody Ranck, VP Strategy and Business Development
Our Data Mutual (UK) – “At this point, Our Data Mutual is an idea with a website. Behind the scenes we are working on partnerships with organisations that will enable us to realise our vision and will bring large numbers of members to the organisation. As it stands today, consumers/citizens are not in the main aware that their data is an asset. It is an invisible thing hard to grasp for the average person on the street. The costs of launching a mass consumer proposition are therefore prohibitive no matter how self-evident those of us in the know hold this value to be.
We think the key to establishing the market for personal data management lies in the need to fix the world of Terms and Conditions—this system is broken. When Apple can see that we spent less than 1 second reviewing 37 pages of terms and conditions, how can they hold us bound to their contents? Their own analytics tell them we have not read them. A policy shift to demanding a consumer-centric model for terms and conditions management would force innovation in this sector and would drive consumer awareness of the value of our data.
So this is where our focus will be—establishing the right market conditions for our organisation is a pre-requisite for consumers to become ready to start viewing their data as an asset.” – Alex Craven, Founder
A personal data ecosystem for health
The odds are stacked against these startups, not simply because they are going against the status quo, but also because it’s uncharted territory. I applaud them for taking the risk. The trading of assets is typically regulated, so where is the regulation about trading your personal data? Even if new laws are passed, one of the biggest challenges I see is consumer apathy.
Currently, you might be using a free app to capture how much you’re running or how you’re feeling today, and it’s likely you’ve waived rights to that data when you downloaded the app. Now, if offered a choice, would you pay £50/$75 to download the same app, except that the data being captured in the app would belong to you and you would have complete control over how it’s used? Some of us might be upset or even angry at current business models, but are we willing to stomach the alternatives? We hear more statements that patients should own their own health data. So if you own your data, then what? What does owning your data allow you to do?
When it comes to selling your health data, there are numerous dangers. Safeguarding the rights of the vulnerable come to mind, whether it’s someone with dementia living in a care home, or a child. Who makes the decision to sell their data, and who gets the value? Not everyone’s data will be equally valuable.
I can see serious implications for medical research, should researchers not be able to pay the amounts that people might be demanding for their data. If the data from someone with multiple chronic diseases might be worth substantially more than someone in good health, would healthy people “hack” the system to falsify their health data to extract more value? This is a plausible scenario, given that the recent news that fake patient data could have been uploaded through a SAP medical app.
However, could selling your health data lead to a more fair and just society? If everyone is able to sell their health data, would that be a method of providing every citizen with a universal basic income? Given how many people worry about paying for social care in old age, could selling your data help you cope with the costs of being looked after? What would “patient empowerment” look like if “health data unions” could leverage the collective value of the combined data to hold the healthcare system to account? Maybe you’d decide to only sell your data to organisations that you trust and which share your values?
In today’s world, where your health data is in the hands of a few, it’s hard to imagine a different future, where the value exchange is rebalanced. Perhaps blockchain technology is going to be the route to putting the value of health data in the hands of the people? It’s already powered the cryptocurrency, Bitcoin, and it would be foolish to ignore this emerging arena. Take the recent concept of Fitcoin, where you get paid based upon the intensity of your workout.
We’re used to seeing the value our investments in the stock market rise and fall. In the future, could we also be watching the value of our health data rise and fall too? Will your health data rise in value as you age or when you’ve been diagnosed with a new disease? If our health data is treated as an asset that we are free to sell, will the proceeds of that sale be subject to income tax, or even a new personal data tax?
It’s encouraging to see new voices that are challenging conventional thinking, attitudes and policies around our health data. In the USA, there’s an “Unpatient Health Data Ownership Manifesto” that has been published. In their manifesto, one point really stood out to me, “Individuals will be able to store, donate, share or even sell limited access and limited rights to their personal data resources.”
In the world of Digital Health, the long-term vision is that data on the state of your health will be streamed 24/7 to interested parties. The race to get hold of your health data is now underway, and it’s global in scope. I still believe that the leading healthcare organisation in 2025 will be the one which has obtained the most accurate, complete and representative data about our health.
Our health data is currently scattered in multiple locations, and each piece of data tells one part of our story. In fact, it’s the organization that is able to link all those different pieces of information about your health into a single story, which could unlock the many mysteries not just in your health, but in healthcare, too. Now, what if you were at the centre of that organisation, and your health data followed you around? Is a “Lifetime Health Diary” one possible future? Could that single view of your health be the currency that shapes healthcare to your needs?
It’s easy to dismiss radical ideas as nonsense, but remember that Britain’s NHS, which so many are now fighting to keep, was once a radical idea too. Whilst we may not end up with a system where you can own, control and sell your health data, I’d encourage you to think of the entire spectrum of your health data as an asset, and whether you’re truly satisfied with the status quo.
Maybe the immediate question for you is whether you view your health data as a public good or a private good? In a wonderful post by Michael Fitzhugh, which examines sharing of personal genome data, different consent levels are mentioned. Is the starting point related to how much control you have over how your health data is used?
It could well be that the most trusted organisation will get the most data. As more entities develop strategies to get hold of these anticipated real-time streams of your health data, how much is your health data worth to you?
The nuviun blog is intended to contribute to discussion and stimulate debate on important issues in global digital health. The views are solely those of the author.