Akkure’s DNA donation start-up offers rewards for genome sequencing

3 Aug 2020

Prof Oran Rigby. Image: Akkure

Our Start-up of the Week is Akkure, a digital health firm that matches patients with the opportunity to deploy their own data to further scientific and pharmaceutical research.

Akkure founder Prof Oran Rigby has spent the last quarter of a century working in the field of medicine, specifically ICU and neurotrauma, spending much of his medical career in Sydney, Australia.

He spent 15 years with the Royal Flying Doctor Service of Australia and worked in the ICU at Sydney’s Royal Prince Alfred Hospital, where he became involved in the areas of automation and data science.

His work in those fields resulted in an honorary appointment to the faculty of robotics at the Queensland University of Technology, along with the award of a 2015 Churchill scholarship to explore telemedicine in remote civilian and military environments.

Over the last eight years, Rigby has helped set up six digital health companies. He moved back to Dublin two years ago and founded Akkure, a digital health start-up based at NovaUCD.

What does Akkure do?

Akkure was created when Rigby realised that numerous businesses are profiting off of patient data, without the explicit permission of those patients.

The start-up has developed a system that allows individuals to take more control of their data, keeping it private or anonymously sharing it in exchange for credits that can be redeemed for what the company calls “rewards”.

Rigby described these rewards as shared value, clinical trial equity and precision drugs. On the first point of shared financial value, he told Siliconrepublic.com, “Currently, sponsors award trial sites and investigators sums of money for recruiting patients. We would ensure that patients enjoy some of this dividend.”

Clinical trial equity, he said, reflects the concept that “in certain circumstances when a patient collective is large enough and has a compelling enough case for the development of new drugs, we would work to secure them part equity or ownership in the drug being developed”.

Rigby explained that this would look like when the US Cystic Fibrosis Foundation sold royalty rights for treatments developed through venture philanthropy to a pharmaceutical company in 2014.

Regarding precision drugs, Rigby said that Akkure’s initiative could help participants access new and more powerful drugs targeting their personal conditions.

“Akkure empowers patients and citizens to be rewarded for using their clinical data to create new medical therapies and cures. We do this by creating the digital infrastructure to match and credit patients with opportunities to deploy their own data, acting as medical data advocates, unlike others seeking to sell data to third parties.”

Contributing data

Akkure matches individuals with research institutions that are willing to cover the cost of genome sequencing, which provides users with a better understanding of their genome, ancestry and inherited traits. To participate, all customers have to do is purchase a DNA sequencing kit, “spit in the tube” and send it to a research institution.

Over the years, genome sequencing has been a controversial topic. This is in part due to the confusion surrounding whether this data is useful on an individual level for willing participants or if it could have negative consequences, such as unnecessarily increased medical and insurance costs, according to Wired.

In 2018, the Guardian outlined how companies such as 23andMe and AncestryDNA provide genome sequencing through saliva samples and, if customers consent, sell this genetic data on to pharmaceutical and biotech companies hoping to develop new drugs. Rigby said that Akkure’s goal is to allow all people to become “citizen scientists” by electively contributing their data to create new cures for a range of afflictions and diseases.

“Our initial focus is rare disease and cancer,” he said. “By engaging and rewarding people to participate in research through loaning their data, we allow for the development of a mass population ‘selfish altruism’, whereby individuals are personally rewarded whilst their collective actions ensure real benefits to society as a whole through the creation of new cures.”

The journey so far

Rigby said Akkure’s work has been “hectic” in recent months and the company has seen “rapid traction” in a number of spheres.

For example, Akkure (which is the trading name for Singularity Alpha) is involved in a project that was successful in the latest round of the Government’s Disruptive Technologies Innovation Fund (DTIF). Last December, €3.9m from the fund was awarded to the blockchain and AI-enabled stratified trial system project, which is led by FutureNeuro, the Science Foundation Ireland research centre for chronic and rare neurological diseases.

Working alongside Microsoft, Ergo and RCSI, this project to build an automated clinical trials platform is now in due diligence with “a major global ‘big four’ corporation” according to Rigby. The aim of this partnership is to deploy the group’s networked precision telemedicine solutions to private and public hospitals internationally.

“We have also completed a recent EU genomics €10m grant with our consortium colleagues at Iqvia, Trinity College Dublin, the Irish Platform for Patient Organisations, Science and Industry (IPPOSI), Ergo and Igenomix Fertility, which has opened a range of markets and networks for our precision medical solutions,” added Rigby.

Akkure has been successfully self-funded to date, through revenue, founders and major Government grants, but is considering attracting external investment if the right fit comes along.

“We would only consider external investment with aligned capital from the perspective of deep domain expertise and shared principles of data democratisation and charitable shared value,” said Rigby.

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Kelly Earley was a journalist with Silicon Republic