For patient advocate Ben Heywood, personal experience trumps political rhetoric when it comes to this week's health care repeal vote.
"Those who don't encounter the health care system through the eyes of significant need of a patient don't really know how broken it is." he said.
Ben witnessed this significant need firsthand when his brother Stephen was diagnosed with ALS, or Lou Gehrig's disease, in 1998.
"My family got a lot of insight into the the system," he said. "We realized how little info there is about what happens to a patient like you--what are the outcomes that are best, what are the best treatments--that information doesn't exist or is incredibly siloed within the system."
Determined to surface the information necessary for patients to make smarter decisions, Ben combined his background in the medical devices industry and his MIT engineering degree and co-founded the social networking site, PatientsLikeMe.com in 2004.
The site, a community of patients, doctors and health care organizations, blends elements of social networks, medical expertise, and accessible data to equip patients with the tools and information necessary to better manage their disease.
"PatientsLikeMe is an opportunity for patients to share their treatments and symptoms in a structured way. They can learn from each other about how to improve their care. If you understand your own illness, you can demand great care."
And while PatientsLikeMe is a powerful tool for its 82,000 active users, the site goes beyond patient empowerment to work with big players in the health care industry to improve treatment and drive research.
"PatientsLikeMe helps the industry as a whole learn from what happens in the real world," Ben said. The site aggregates anonymized data and works with non-profits, academic researchers and pharmaceutical companies to fulfill the unmet needs of patients.
For Ben, their work with pharmaceutical companies has yielded measurable change within the industry.
"The big pharma companies are realizing that ultimately patients are becoming the drivers of health care decisions. The best ones are really trying to understand how to not think about selling pills but how to sell better outcomes."
With their emphasis on data sharing, PatientsLikeMe could play a role in what Ben sees as one of the biggest hurdles to providing patient-oriented care across the country.
"The bill we passed last year was a good start," he said. "A key feature for our success is the ability for information to flow so we can learn from the collective. Millions of people have experienced things and we don't have a way of learning from those. That's an impediment and that's what we're addressing."
While his brother Stephen died of ALS in 2006, Ben claims the data behind Stephen's battle with the disease remains relevant.
"His experience with his illness still lives on. His disease progression and all of that data will be there for everyone to learn from going forward."