Why healthcare needs 'patient leaders' to make new solutions work

While leading the health practice at Yahoo, Jack Barrette made a discovery that changed the course of his career.

In the early 2000s, Mr. Barrette — former president of a consumer health strategy consultancy and former health and medicine lead at an online marketing firm — was tasked with building Yahoo's health presence. As part of his effort to expand the company's healthcare reach, he jumped headfirst into Yahoo Groups, a platform where users convened to discuss issues ranging from music to politics to sports. He wanted to understand what made the search engine's users tick.

There, Mr. Barrette discovered thousands of online discussion boards dedicated to healthcare, where passionate users would steer discussions on medical conditions, provide health advice and offer support to one another. "I found a relatively small, but passionate, group of consumers who were helping thousands of others by leading health groups and answering questions," Mr. Barrette said during an interview with Becker's Hospital Review.

Mr. Barrette dubbed these users "patient leaders," and in 2007 he founded WEGO Health, a company centered on the idea healthcare organizations need these advocates to inform improvements to the care delivery process.

"A patient leader is someone who uses their health journey to educate others and raise awareness," explained Mr. Barrette, who now serves as CEO of WEGO Health. "We've been successful in recruiting more than 100,000 patient leaders to WEGO Health by demonstrating our commitment to building their visibility, getting them in front of the industry and ensuring they receive compensation for their time and expertise."

Today, WEGO Health connects its network of patient leaders with hospitals, health startups and drugmakers to ensure these organizations incorporate the patient perspective into the design, development and promotion of their products and services.

Mr. Barrette spoke with Becker's Hospital Review about why this patient-driven innovation is essential for organizations seeking success in today's healthcare landscape.

Editor's note: This interview has been edited for length and clarity.

Question: What surprised you most about working in the healthcare industry?

Jack Barrette: The disconnect between the industry's goal to improve the patient experience and its failure to make greater strides. Health systems, in particular, have genuine incentives — financial and otherwise — to become truly patient-centered organizations. Getting there requires a commitment to human-centered design, yet most health systems continue to innovate for patients, instead of with patients. The key is to include patients throughout the development lifecycle — it's not enough to get their input at the beginning and then at the end.

Q: What are some challenges you've seen for hospitals looking to engage patients in their healthcare?

JB: A big challenge is doctors and care providers have too little time to connect with their patients, and that is only amplified once the patient walks out the door. Hospitals have struggled to put systems and tools in place that can bridge the engagement gap between visits. Patient portals help only marginally, if at all. We believe health systems could better collaborate with patient leaders to help on this front, especially with significant challenges in the industry related to self-management, medication adherence and behavior change.

Q: WEGO Health's work revolves around the idea of "patient-driven innovation." How do you define patient-driven innovation, and how can the concept help hospitals today?

JB: Patient-driven innovation is what happens when you bring patients to the table as peers, as co-creators and fellow collaborators. There's plenty of evidence to support the fact that hospitals uncover new solutions to improve the patient experience when patients are actively involved in a human-centered design process. At WEGO Health, we connect healthcare companies to our network of patient leaders, most of whom are hyper-connected through online patient communities and social media networks.

Q: What opportunities do you see for hospitals to include patients in the development of new programs and technologies?

JB: At WEGO Health, we see an opportunity for hospitals to involve patients in every phase of the process, from patient journey mapping and personal development to design sprints, user testing and content development. One of our hospital clients recently discovered unmet needs for its epilepsy patients by bringing a patient expert with epilepsy into the design thinking process very early on. The patient is now a member of the advisory board and is as integral to the design process as the clinicians, researchers and health IT team.

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