New Evidation CEO to double down on patient data empowerment

Earlier this year, San Francisco-based real-world data company Evidation’s president and COO, Leslie Olay Wilberforce, stepped into the company’s CEO role in a planned transition. She’s the first non-founder to lead the company, but she’s hardly a newcomer, having worked at Evidation since 2015, managing some of the company’s most impactful partnerships. pharmaphorum sat down with Wilberforce to discuss her plans for the company now that she’s in the proverbial big chair.

It’s no secret that across vast swaths of the tech industry, the individuals who think of themselves as customers are actually the product – or rather, their data, collected and sold to the highest bidder, is. There’s something distasteful about this model in any iteration, but it’s particularly suspect when it comes to something as precious and intimate as health data.

Evidation’s calling card is its flat rejection of that ethos, going back to its founding 13 years ago. The company secures health data from millions of individuals and provides it to all kinds of researchers and stakeholders, but they do it with full consent and transparency, maintaining user control over their data.

“Individuals control their data, individuals own their data,” Wilberforce said. “We've always had this really strong stance on building trust with people first, and that relationship with people is going to matter in the long term.”

It’s not just a moral choice for the company – it’s also a practical one. Treating patients as partners builds lasting customer relationships, which increases the value of the data.

“Because we own the connection with the individual, not the connection to the system, we can go back and ask people more questions, gather more data, match people with research that feels personalised or tailored to where they are in their healthcare journey,” Wilberforce explained. “That, as I look forward in the company, builds on those same DNA elements – deeply label people longitudinally at scale, return value back to them in a trusted way – but it's looking forward where I'm really excited to have more focus.”

Ten years ago, the company’s approach to gathering patient data with transparency and openness was much less accepted, with more companies “just hoovering data and selling it behind the scenes,” Wilberforce noted.

“I do hope that we influenced the market somewhat there because we were just very unwavering about what our approach would be,” she said.

Building consumer value with AI

People sign up for Evidation for all kinds of reasons – including altruistic motivations and cash rewards, but also value-adds built into the experience, helping people manage conditions better by tracking data and even delivering insights based on that data.

“We have always compensated motivated people for sharing their data for research use cases […] and that's certainly one form of value,” Wilberforce said. “One of the things that we've built upon that is more intrinsic value, which is ‘How can you get insights back from this different data that you've decided to share with us?’ ‘How can you understand through some of our smart AI-driven prompting the right next action to do around your health at a given time?’ That's been through line that we've built upon over time.”

One of Wilberforce’s goals as CEO is to keep building up AI capabilities, especially on the consumer-facing side.

“We’ve done a lot of work historically in AI and ML to enable user experiences, to enable smarter data collection, to enable matching people with clinical trials that may be relevant for them. That's certainly part of where, as I think of this year and going forward, we're putting more emphasis.”

For example, Evidation recently rolled out a new programme called “Migraine Smart”.

“If you think about the path to diagnosis or someone having a little better management of their migraines, it's really winding,” Wilberforce explained. “You go to your doctor and you're like, ‘I'm getting terrible headaches.’ They send you home and say, ‘For the next three months, write down in a journal by hand what is happening’.”

With Migraine Smart, the app uses machine learning to detect signals in participants’ health data that could be the onset of a migraine, then offers additional prompts to help them track symptoms reliably in real time.

“The really interesting thing is, at the end of the day, we've used that AI model to probably catch someone earlier than when their migraine is coming on,” she said. “And the second thing is, we do the data collection in a lightweight way for the user, and then we roll out an information sheet that they can take to that physician visit.”

Evidation hopes that researchers looking at migraines will be interested in partnering with them for this unique data set and the opportunities to reach the population for clinical trial recruitment. But they built the program proactively.

“We're doing a lot of that early work without clients coming to ask us for it. We're doing it because we think we can find really interesting insights there and we can return value to members by participating,” she said.

Partnering with pharma

Evidation has always considered pharma to be an important partner.

“We've worked with pharma for the whole history of the company. It's really a key focus area and segment area for us,” Wilberforce said. “I think that one of the reasons that's been a mainstay of what we do is that pharma has some clear needs that we feel like we can partner with them to solve. Often, that's like, ‘Hey, how do I, in a research context, how do I really understand quality of life endpoints around the therapeutic that I have? How do I really understand how a digital therapeutic companion might affect outcomes in someone?’”

Evidation can also help pharma companies understand patient behaviours and medication choices. And, as mentioned before, they’re strongly positioned to improve clinical trial recruitment.

“Most trials fail because they don't recruit people,” Wilberforce said. “Having a really precision-based way to catch people and recruit them that can tighten the funnel into pharma is also something we can help with because we have this population as a core asset of the company.”

One way Wilberforce wants to change is to better highlight the work they’re already doing that might be of value to potential partners, including pharma partners.

“We’ve been too humble on the cohorts of people and their data that we are already connected to,” she said. “We found that, gosh, that continues to be so differentiated. We were already – organically because we It felt like it was the right thing to do for research – tracking 20, 30, 40 different tracks of people around different therapeutic areas over time. You'll see that start to be more top of message and how we talk about the company and how we talk about what we do.”

Wading into weight management

Of course, it’s incumbent on a company like Evidation to respond to trends in the market, and the rise of GLP-1 medications has shone a huge spotlight on weight management. It’s an area where Wilberforce sees a lot of potential.

“The thing that's been really interesting about weight management is so much of that data doesn't exist in traditional real-world data,” she explained, noting that traditional EHR and claims data might not capture people getting GLP-1s from telehealth providers like Ro, not to mention other parts of the therapeutic journey.

“[With Evidation’s approach] you get everything that's happening in between episodic clinical interactions. Like, who's on what other digital programs? Who's making what choices around therapies? Then, when you have the wearable data, you see fascinating things, like is someone about to drop off of a GLP-1? What does weight bounce back look like when someone comes off? It's a big topic of ‘maybe people aren't going to be on a GLP-1 forever.’ What do you do adjunctive to help weight management, weight maintenance after that period of time?”

Whatever is in store for Evidation, Wilberforce is pleased to see that the market has proven out the company’s approach to real world data over the past decade.

“We made two really big bets as a company early on,” she said. “One is the direct connection with people would matter over time instead of betting on a system or provider. But two was, some of the system data would become more portable and able to be controlled by people over time. It feels great 10 years later to be like, ‘Hey, both of those actually played out and feel really relevant to where we think we can add value right now’.”