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Could you control–and monetise–your own health data?

Axia Medicine is rethinking the market for patient information

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It’s a familiar startup pitch: ‘We help you take control of, and make money from, your own data’.

But when they’re talking about health data, and the founder in question has had senior roles on genomics projects for both Amazon and Microsoft, it’s worth paying attention.

Today we introduce you to Axia Medicine.

– Martin

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Axia Medicine wants you to control–and monetise–your own health data

In summary:

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As Benedict Evans explained a couple of years ago, a lot of the personal data we’re told is valuable isn’t actually worth anything once taken out of the context in which it was created.

It’s a fair point, but one area where it’s not true is health data. Information about your health is valuable to you, and it can be valuable to pharmaceutical companies, governments, and others looking to understand broader healthcare trends.

So if there’s one field in which owning and controlling your own data makes a lot of sense, it’s health. That’s where a startup called Axia Medicine comes in.

“In the personalised healthcare industry, patient data is the most valuable asset,” says founder Alessandro Riccombeni.

“Today, patients have almost no control or agency over their data. This data is lost in silos, it’s fragmented across multiple organisations, and everybody misses out.”

By ‘missing out’, he means patients missing out on opportunities to take part in research and clinical trials, researchers missing out by not necessarily having easy access to the data they need, while companies investing in serving niche areas of medicine can’t target the right patients easily.

As Riccombeni sees it, it’s a broken system.

And so Axia Medicine is developing a mobile app and data platform designed to be like ‘Dropbox for your health’, giving you a central storage area for all your health information, no matter which healthcare services you use over the years.

Axia Medicine’s current website

Rethinking our relationship with our own data

“We enable each citizen to take control of their data from the beginning,” says Riccombeni.

“When you generate a new type of data, whether it is a blood test or molecular assay, like genome sequencing or radiography, the data can be uploaded directly through our mobile app onto our repository.”

And more than just scans and test results, he says Axia Medicine’s platform is designed to handle your full genome, which can amount to hundreds of gigabytes of data.

Doing that opens the door to individuals controlling their own genetic data, rather than having it sequenced and taken away to be studied or sold by third parties.

“'I’m very happy that my sensitive documents are secure in Dropbox, and I decide who can see them. It should be the same for my genomic information,” says Riccombeni.

“I want to make decisions about how my biological information is shared. It should not be a hospital or a professor I never met to make the decision for me. “We want to move the value chain away from aggregators of data to the patient directly.”

Indeed, Riccombeni says he wants to position the patient as the key player in the healthcare industry. 

Companies like 23andMe collect genetic data from customers and then sell it for research purposes without customers necessarily knowing exactly where insights from their data are being used. Axia Medicine wants to allow individual patients to choose who gets access to their data on a case-by-case basis, and make money into the bargain.

Rather than grant any company unlimited access, Axia Medicine will let users give companies rolling consent over fixed periods of time, letting patients choose which files and data types they want to share with any specific organisation.

“It won't be an unlimited buffet,” Riccombeni says.

And he says he wants patients to be able to receive more than 90% of the revenue from their data.

“The more patients provide valuable information and engage with the community, the more they are visible and are chosen to participate in studies and trials. And the more service providers and studies cater to the needs of patients, the more they get access to data. It's a virtuous flywheel that really incentivises each player to do what's best for better patient outcomes.”

Alessandro Riccombeni

The story so far

Riccombeni has been in the health data world for 15 years, from working as an oncology researcher, through a PhD in computational infection biology, to a career in bioinformatics.

This led him to senior roles with Amazon and then Microsoft, working on their genomics initiatives. 

He says his work at Amazon, as head of precision and genomic medicine for AWS, contributed to the launch of Amazon Omics, which the company describes as “a purpose-built service to store, query, and analyse genomic and biological data at scale.”

As you can imagine, this gave him a good grounding for what he’s trying to achieve with Axia Medicine. 

“I kept asking myself the question, who in this market is going to help patients manage the data and unlock the opportunity of personalised healthcare? That it was not happening, so last August I went all in,” he explains of his decision for switch from big tech to startup founder.

The tech itself isn’t built yet, but the plan is to build it around the first patients’ data before scaling up from there. Riccombeni says he recruited a CTO who worked with him at Amazon and “was directly responsible for the creation of a population-scale cloud service for precision medicine.”

The plan now is to work with two partner organisations in the oncology space to onboard the startup’s first thousands of patients.

And there’s more!

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