WeGo Health aims to cast patients as sophisticated life science industry collaborators

The Quantified Self movement has been about self-tracking and patients demanding their data from life science companies, and such empowered patients have contributed tremendously to highlighting the basic inequity in our healthcare system: that it is not patient centered.

Through terms such as “nothing about me without me” groups of active patients have sometimes poked the industry in the eye to get them to, at the very least, include the patient perspective. But now there is a movement afoot to leverage the expertise and sophistication of certain groups of patients and recast them not as antagonists of the industry but as collaborators.

One such entity that hopes to leverage patients with the largest megaphones — read those with significant social media presence — to helping life science companies in everything from product design to product promotion is WEGO Health. In September, founder and CEO Jack Barrette was a speaker at the annual conference of AdvaMed, the largest device industry trade association and  traditionally a venue that paid outsize attention only to industry players until recently. Barrette said in an interview at the conference that at the start of the panel he commented that it was great to be “finally here.”

While charting a different path, Barrette recognizes the contributions of the Quantified Self movement and other strong patient advocacy groups.

“They opened the door,” Barrette said of the Quantified Selfers who exemplified the “give me my damn data ” attitude in trying to exert greater control of the raw data collected from their bodies and stored on different medical devices such as insulin pumps and implanted defibrillators, among other things.

But the tide has turned somewhat.

“Now there are a lot of people that are saying I want to design the way you can commercialize and distribute and we can even support people to understand the data that you’re giving. This raw data doesn’t help most people,” Barrette said in a recent interview.

WEGO Health has more than 100,000 “patient leaders” in its network. They are defined as patients who have a strong social media presence with a large following and who could be construed as influencers within their particular disease area. These patient leaders are those that can engage with companies at the product design level and can provide qualitative feedback that can help to develop something that will resonate with the larger patient community.

WEGO Health can also develop content once the product is being commercialized and use the social channels of these patient key opinion leaders to promote the product to the patient community they lead. And finally, the company can also help in the area of what Barrette called “patient-supported outcomes” —  technology that has the potential to change quality of a patient’s life is provided enough support to gain ground among a broad patient community.

“So much beautiful technology is brought to life there but no one thinks of the community aspect of it,” he said.

Founded 11 years ago right before the Great Recession, the idea of leveraging patients as collaborators may have been a few years too early. Indeed after raising venture capital, Barrette, a former Yahoo executive, bought out his investors in a bid to keep the business afloat when the investors decided to bail during the downturn of the late 2000s.

But in 2018 as patient centered care has taken hold and emerged as a business priority that gamble seems to look reasonable. WEGO’s revenue is less than $10 million but is profitable, Barrette said though he declined to provide more detail. He expects revenue to increase 65 percent this year. The company has worked with hundreds of companies, nonprofits, governments and other entities, but two companies it can name publicly are pharma companies GSK (GlaxoSmithKline) and ViiV Healthcare. Most WEGO customers are pharma companies.

“[Industry is] finally understanding, ‘Oh my god the world has changed. I have to bring patients in.'” Barrette says of how company attitudes have shifted.

With GSK the company has run a campaign around lupus and developing a resource kit with the help of patients and then leveraging a patient leader to explain to lupus patients the benefits of having such a resource kit.

“Patient-centricity isn’t just a word. Outcomes isn’t just a word anymore. Value has got a definition that’s interpreted by the different stakeholders differently but we need to include the patient’s determination of value.”

Speaking of value, WEGO Health’s business model is based on the type of interaction companies want to have with patients. If a pharma company hires WEGO to help with a product design program, the Boston-based company would charge to build a patient leader advisory team, and to structure and facilitate the interactions with that team. Prices vary based on size of team and length of the program but the biggest factor for payment is based on the number and type of interactions with the patient leader team.

For promotions, the company charges to build ad units featuring the patient leader’s perspective — these are mostly video. WEGO also gets paid based on media fees tied to a click or a download of such promotional content.

Patient leaders who join WEGO Health for free can find value in two ways. By being part of a patient leaders team on a product design project, they get paid hourly for their insights or if they advice in design programs. They are also paid to produce any videos or other content, and paid to attend events that benefit the event sponsors.

Secondly, patient leaders get value by being connected with other patient leaders who may not be part of their following or may be leaders in a different disease category altogether.

Barrette offered an example of why these connections are meaningful.

[Someone might think,] ‘How do I create an instagram channel for RA (rheumatoid arthritis0?’ And we can say meet this person in breast cancer who did it and you’d not normally meet them,” he explained. “We keep track of 200 different therapeutic areas and it tends to be where [patient leaders] live. People tend to live in their silos and we tend to take a horizontal cut.”

Patient groups are of course not new in the world of healthcare. PatientsLikeMe is large entity for patients organized under various disease states and there’s groups like National Patient Council that also aims to bridge the gap between patients and industry.

Barrette doesn’t see them as competitors – where PatientsLikeMe is a large patient community, WEGO Health is a network of those patient leaders and so represents a more sophisticated sliver of the larger patient population, he believes.

“Our job is to aggregate all the people at the top and the leaders and moderators  of these communities and then connect them to companies,” he said.

And he maintains good relations with all patient advocacy groups and may even recruit patient leaders from within the WEGO Health network to join these patient councils.

Eleven years after founding his company, Barrette believes the time is ripe for an industry transformation.

“These are extraordinary patients who can get industry over the hump of ‘We can have patients a part of our team and not on the outside,'” he said. “You have physicians that are executives that are part of the team. We want to create that same perspective for the patient.”

 

Photo: manop1984, Getty Images