By Allison Proffitt

May 31, 2018 | If you really want to meet patients where they are, send a team of their peers. That’s the approach of Clara Health, a company built as the “google of clinical trials”. Clara Health has mobilized its Breakthrough Crew, an ever-expanding team of over 100 patients, advocates, and caregivers that share their firsthand experiences with disease and clinical trials within their communities.

The effort was recently named the grand prize winner of the second annual Patient Engagement Awards at the Summit for Clinical Ops Executives—SCOPE—in January.

Lilly Stairs is Head of Patient Advocacy at Clara Health. She entered the Breakthrough Crew and presented the program to the judges during a live presentation and question session at SCOPE. The judges selected The Breakthrough Crew as the grand prize winner from five finalists.

“We’re working to put the power in the hands of the patient and make it easier for patients to connect to trials, and empower them with the knowledge that clinical trials are an option” Stairs told Clinical Informatics News after the event. 

Stairs, herself, is a patient. “I have a few different autoimmune diseases,” she says. She was Clara Health’s third hire after the company started in 2016, and is passionate about giving platform to the patient voice.

The Breakthrough Crew is a collection of similarly-minded patients and advocates who are “dedicated to raising awareness about the power of breakthrough research in clinical trials,” Stairs explains.

“Patients tend to be more trusting and more willing to hear from fellow patients,” she says. “There are so many amazing patient advocate influencers who are making a powerful impact. They are being listened to, almost as much as a medical professional online. Patients are turning to fellow patients.”

It’s a phenomenon that many have recognized. Patient networks like PatientsLikeMe and MyHealthTeams have blossomed. Many are pointing their members to clinical trial opportunities, but that usually isn’t the focus.

For Clara Health’s Breakthrough Crew, alerting patients to the opportunities of clinical trials is the focus.

“Our Ambassadors are bridging the gap between myth and reality,” Stairs wrote in the Clara Health entry. “And they’re doing this both ON and OFF line, because it’s important that we are reaching all patients, no matter what their tech literacy is.”

Boots On The Ground

The online and offline nature of the advocacy is especially important to Stairs and resonated well with the judging committee. Many of the Breakthrough Crew advocates have built significant digital audiences on their own, but their outreach efforts are not limited to Twitter chats and YouTube presentations.

“Through the program they go out to local events such as health fairs and support group meetings to educate fellow patients on clinical trials,” Stairs explained. “They are reaching audiences that a lot of us couldn’t reach, and couldn’t reach as effectively as they can. They know their community best.”

Stairs works with the Breakthrough Crew ambassadors to help them identify the hubs in their communities. Stairs says she could certainly make a list of relevant events in an area for outreach, but that isn’t nearly as effective as working with local patients. “These patients live in their communities and they know it best and are able to uncover the right events,” she said. Her job is to ask the right questions and serve as a sounding board for brainstorming.   

“For some people it’s local support groups; for some people it’s a health fair,” Stairs explains. “One ambassador conducted fundraiser for the National Psoriasis Foundation, and as part of her work for that she talked to people about clinical trials.”

For the Ambassadors themselves, the Breakthrough Crew has become a tight knit community, one that offers support and purpose. “An ambassador recently told me that she can no longer work due to her chronic illness and is so thankful for the Breakthrough Crew, because it has helped her find purpose again,” Stairs wrote in her entry form.

Payoff In People

All this hard work is paying off: 15% of new users on Clara have come from the Breakthrough Crew, Stairs says.

The Breakthrough Crew’s goal is to make patients aware of clinical trial options. Clara Health’s role, then, is to offer concierge-level assistance to get patients into trials. All of the trials on ClinicalTrials.gov are listed on Clara Health’s site in an easy-to-search format, but Stairs says the Clara Health staff is very hands-on with patient support.

“We will hand-pick trials for the patient. We’ll go ahead and call trial sites on their behalf. We’ll coordinate with their insurance. We’ll coordinate the travel. We do everything at every step to help prevent patients from falling off the funnel,” Stairs explains.

All of this is free to patients and caregivers. Clara Health is funded by partnerships with biotech and pharma companies, but patients don’t get a specific list of trials, nor are they steered toward something. “We list all trials; we believe patients should have access to all trials,” Stairs says.

“One of the reasons we have this issue with clinical trial recruitment is it’s so fragmented. We need to make this a more accessible platform, a more democratic process.”