Taking a better path: Fair trade data ‘is better data … there’s no question about it’

By Melissa Fassbender

- Last updated on GMT

(Image: Getty/wutwhanfoto)
(Image: Getty/wutwhanfoto)

Related tags Data collection Patient recruitment Clinical trials

Hu-manity.co acquires Betterpath in a deal that will see both patients and pharma gain access to some 80% of health care’s “dark data” – information that comes with explicit consent under fair trade practices, which is not only a good ethical posture, but good business, says CEO.

Speaking to the decision to acquire Betterpath Health, Hu-manity.co CEO Rich Etwaru said, “It doesn’t make sense to try and be everything to everyone, but instead to focus on where we have brought our capabilities to the market, which is the track and trace of consent of the existing data that flows in the supply chain,”​ such as from electronic health records (EHR).

Betterpath’s technology has been tested with 2,000 different individuals over the past five years and enables patients to extract that 80% of data in health care that is “stuck” on paper or unstructured areas – the so-called “dark data,” Etwaru explained.

This technology allows Hu-manity.co to operate as an investigation review board (IRB) approved observational research cohort. It also sees the addition of two patents to its intellectual property (IP) portfolio.

Together with Hu-manity.co, the companies will now add consent to this new data set. “It's one thing to unleash the data, it’s another thing to make sure it's being respected with fair trade practices,”​ he told us.

Hu-manity.co’s customers are two-fold, the individual consumer and the final data buyer, pharma, both of which are asking for consent not only for existing data, but for new data sets.

For patients using Hu-manity.co’s #My31 app, the added utility allows users to download all of their health data – not only from their electronic medical record (EMR) – for easy transfer to other health care providers and for self-review.

For pharma, this could accelerate the enrollment of clinical trial participants, who have historically, in some ways, been treated like the friend you call when you want something, Etwaru said.

As part of this, the company is having discussions with patient registries and contract research organizations (CROs) about how to be a better friend to the patient – establishing a relationship built on clear consent that can be managed and changed over time.

“We’re trading on trust, we’re trading on transparency,” ​said Etwaru. “We just can’t treat patients as people that we want to call every time we want something … We have to build a longitudinal relationship over time.”

Consent as a service and fair trade data

Hu-manity.co is part of a group of technology companies rallying around what is being called the fair trade data movement, all motivated to “clean up some of the problems left by the last generation of technology companies around data,”​ said Etwaru.

In a couple of weeks, the Institute of Electrical and Electronics Engineers (IEEE) is expected to announce the launch of a fair trade data initiative. Health care data will be one part of this, said Etwaru, and will specifically address consent, which today is most often operated as a permanent “on/off switch.”

“We’ve never really captured granularity of consent. We always thought about it as a permanent thing,” ​he explained. Though changing this today, Hu-manity.co can capture consent at various levels, allowing both consumers and corporations “to look at it over time, investigate it over time, and change it over time.”

The other aspect of this is opt-in/opt-out options – which most of the time aren’t actually an option, but instead, a situation in which the consumer automatically ‘agrees’ to something.

“This is where the market forces are starting to get ahead of the policy and regulations," ​Etwaru explained, noting that the pharma industry is not wanting to “live forever” with this scenario.

“We want to get above board … We want to have an explicit relationship with a large number of customers at scale,”​ he said, speaking to the demand from pharma, which in large part was what drove the deal with Betterhealth.

“We know that there is a better way … that you can actually do well while doing good,”​ said Etwaru. “Having explicitly consented data is not only a good ethical posture, it’s good business.”

This explicitly consented relationship at scale is something the industry has not been offered before, though. So, part of this movement also is about being on the right side of history, while improving the data that is sold today.

“Explicitly consented data is better data, there’s no question about it,”​ Etwaru added. “You have the human being at the beginning of the supply chain. It’s almost as if I was studying your shadow before.”

Trust, track, and trade

Hu-manity.co has different business models for different market maturities. In the US, Etwaru calls it trust, track, and trade.

“The consumer engages in an app [#My31] and essentially says, ‘I want to claim an ownership interest in my data and set consent about how I would like it to be respected,’”​ he explained.

The company then as “an agent of the consumer” ​can approach pharma, showing them individuals who have explicitly laid down how they would like their data to be respected

In many ways, Etwaru said the company is a consent broker, not a data broker. “Everybody has been doing the best that they can, but the world has changed, and consent is now table stakes in the big data business,”​ he added.

Hu-manity.co’s offering spans the supply chain, providing consent from the data source or owner, the data collector, such as the EHR, as well as data curators, like patient registries. It also extends to the data brokers who sell the data and for the data buyer – the health care industry.

“We have an offering for the supply chain that enables all those involved to do better while accelerating research,”​ Etwaru added. On top of this, the company’ standards make sure this is done in a consistent way so that other companies can move away from being data brokers and start being consent brokers, he explained – and so the supply chain isn’t left with “18 different versions of consent to get confused about.”

Building something together

To have this conversation around fair trade data would not have made sense five years ago, Etwaru said, because pharma had not yet clarified the hypothesis that consented data is not only doing well, but doing good at the same time. ​Though this hypothesis has now been clarified, he explained.

Etwaru said the industry at large is asking every incumbent in the supply chain: “Please sell me fair trade data​,” not wanting to be in a position that would put their brand or compliance at risk.

“Every company wants to be smarter,”​ he added. Still, the increasing maturity and use of artificial intelligence (AI) and big data is pushing the industry closer to an ethical boundary that if crossed, could be hard to come back from, especially given the public’s lack of trust.

But this is a demand-driven industry, Etwaru said, and the inception of Hu-manity.co and its acquisition of Betterpath were both driven by pharma.

He said, “It shows that some of these companies are willing to put their own individual agendas aside to build something together that is better for the entire category.”​ 

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