Company Supports Patient Data Sharing Via Blockchain

After a year in development, a tech startup has released a platform using blockchain to help patients share personal health records. The company, which was founded by former IMS Health exec Robert Chu, plans to sell their information to pharmaceutical companies without involving a third-party data broker.

Embleema, which built its software on the Ethereum smart-contract platform, is focused on delivering what it calls “real world evidence” to drug researchers.

Its blockchain-based app, which is known as PatientTruth, allows patients to pull provider CCDs and Fitbit data together in a single location. The idea here is that blockchain will permit patients to manage data sharing permissions far more securely and effectively than with other approaches.

When patients agree to share their data, they get crypto-tokens. Embleema, for its part, generates income by selling an anonymized version of that data to clinical researchers.

The company contends that its data offers significant advantages over traditional data sources include that it offers in individual rather than aggregate data. Having access to individual data allows drugmakers to monitor a given patient over time, which helps to improve research and drug development, it says.

On the whole, Embleema seems to have a smart business model and seems to address some well-defined needs. Bringing together health data users and sellers directly probably offers some advantages. And it will probably be very profitable to give drugmakers access to real-time patient data structured as individual records.

That being said, I’m not sure how the company will get, much less maintain, patients’ interest. Other than people in this industry, few of my acquaintances or family members have the slightest idea of how to upload their health records. In fact, some of them would be quite intimidated by the prospect.

Also, it’s is a little weird that patients who share their data with Embleema are paid in tokens rather than actual publicly-negotiable money. I know I’d find cash incentives to be a lot more motivating than tokens. My guess is that either way, patients aren’t going to get much of the income generated by their data, and I have little doubt that competitors will point this out.

Of course, clinical researchers always face some form of obstacle in getting the data they need. No matter what approach they take, the data they choose seems to have some significant limitations.

I can’t tell whether Embleema has solved this problem completely, and if so, whether its solution is scalable and if it’s really any better than companies like IMS Health, but it does seem to be focused on a sector with deep pockets and a bottomless need for patient data. In fact, I’m sure its competitors will show up soon.

About the author

Anne Zieger

Anne Zieger

Anne Zieger is a healthcare journalist who has written about the industry for 30 years. Her work has appeared in all of the leading healthcare industry publications, and she's served as editor in chief of several healthcare B2B sites.

2 Comments

  • “it’s is a little weird that patients who share their data with Embleema are paid in tokens rather than actual publicly-negotiable money. I know I’d find cash incentives to be a lot more motivating than tokens.”

    I think you’re right about this for many patients. A token doesn’t feel the same as cash for most patients. However, the reality is that since they build on Etherum, then those tokens are as good as cash. You could go to something like Coinbase and convert those tokens to cash. It’s not a super easy process right now, but it will get there. However, the fact that you didn’t know this is a perception that companies like this are going to have to overcome when it comes to helping patients understand what they’re getting in a token. If they’d done their own token, then that’s a bet on whether their token will have value later or not. It might, but it might not.

    A token without a marketplace isn’t worth anything. Etherum has a marketplace though. We know right now that 1 etherum is worth $462.11. Of course, since it’s a marketplace, this goes up and down (sometimes wildly right now). And they can give you .00001 ethereum.

    Your question about how much value they’ll share with patients is a good one. Hard to predict how that will play out, but it’s a fair prediction that many patients will do a bunch of work and not receive that much in return. The problem is that something is better than nothing (which is what they get now when their data is shared).

  • http://www.PatientDirected.io another project that is focused on empowering the consumer and allowing them to share and monetize their data with a host of stakeholders and solving data interoperability. It is based on a newer and faster blockchain called EOS, and the patient accounts are settled in USD.

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