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Trust, Transparency and Medical Data: An Interview with Talking Medicines’ Elizabeth Fairley

Ross Kelly

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Talking Medicines

DIGIT caught up with Talking Medicines co-founder, Elizabeth Fairley at Data Protection 2019 to discuss the challenges of processing sensitive medical data. 

Medical data has, in recent months, been a hot topic in the tech world. Recent high-profile acquisitions, such as Google’s Fitbit takeover, have brought concerns over medical data usage to the forefront of global conversation.

While concerns are justified and the need for a serious discussion on this issue is required moving forward, it must be noted that harnessing the power of medical data in a responsible manner could offer huge benefits for people around the world.

One such company aiming to use medical data for good is Talking Medicines. Co-founded in 2013, the Glasgow-based healthtech startup helps patients better-manage their medicines at home, with its Medsmart® app linking the barcode on 25,000 UK prescription drugs to information about the medicine and how to take it.

Working closely with pharmaceutical companies, the app offers detailed real-world insights into how medicines are taken.

Last week, Talking Medicines’ chief operating officer (COO) Elizabeth Fairley spoke to DIGIT about the challenges it has faced when processing and leveraging such sensitive data. Transparency, trust and communication are integral to the success of both Talking Medicines and a plethora of other businesses worldwide.

“This is an issue that is absolutely fundamental to our organisation,” she says. “Before we even wrote a line of code we talked to people about what was important to them, we talked to customers about what their worries were or where they felt the challenges lay.

“Obviously, we addressed the good things, the benefits, but we really wanted to dig into the questions and worries to understand what challenges we had to overcome before we started coding.”

The early developmental stages at the company were difficult but exciting, Fairley explains. Sailing into uncharted waters and dealing with medical data amidst an era of growing awareness of data protection and the pitfalls of poor governance was challenging.

Initially, Fairley et al. sought advice from regulatory bodies, such as the Information Commissioner’s Office (ICO), an organisation that no company wishes to find themselves in hot water with. From the get-go, building these relationships and maintaining a strong, data-focused founders team and board helped guide the company through those early stages.

“We took advice from the ICO, which was brilliant because they can really give you a good steer of how to keep yourself safe,” she says. “I think also having such a strong board, which was very data-focused, was equally important.

“To be honest, I think this was absolutely essential, as when you’re moving along there are many grey areas that you absolutely do not want to fall into.”

Helping Medsmart® users to understand how their data is being processed and used is a key focus at Talking Medicines, according to Fairley.

Through the app, users freely provide “specific, informed and unambiguous consent” and are able to withdraw consent at any time. Without the fundamental trust of one’s customers or users, the game is a bust, so the firm works hard to evolve and manoeuvre with continually changing needs.

“We’ve essentially got two sides,” Fairley explains. “We’ve got the consumers who are using Medsmart® or any other product that collects data around how people are taking medication or manage a condition. From our customer side, so that’s the pharmaceutical companies, they really want to understand how people in the real-world are taking medicines because that’s different from a clinical trial setting.

“This means that trust and transparency are absolutely vital and you have to make considerations for both ends. You have to respect that products are not for everybody and give them the ability to choose not to use this anymore while acknowledging that pharmaceutical companies are risk-averse and traditional in their approach.”

Earlier this year, Talking Medicines secured more than £600,000 in grant funding from Scottish Enterprise and will take part in FutureX’s 2020 Silicon Valley Scale programme. As the firm continues to scale, new regulatory challenges will likely be encountered, Fairley says.

Having been launched in a post-GDPR era, however, the company’s relatively small size and agility has, thus far, been a huge advantage when working in this area.

“We have been lucky as we came through GDPR, so it wasn’t as if we’d had the product and then thought ‘oh my goodness, now we have to put this in place’,” notes Fairley.

“It’s far harder for other companies that are much bigger who are now having to think about putting that team of DPOs in place, and focusing more on the data protection element.

“Our challenges are going to come when we scale. But right now we’re a small team and we are managing it well, and with the Founders being so involved in taking that responsibility and approval of everything we do, I can see that one challenge moving forward will be building our team with people who have the same values and strengths within compliance.”

Ross Kelly

Staff Writer

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