The laundry list of side effects at the end of TV drug ads, and the giant instruction sheets you get at the pharmacy, can often be befuddling. Informulary, a site launched this week in beta, is designed to fix that, and to provide an easy resource for evidence-based facts about popular medicines.
The site was founded by a team of independent researchers at Dartmouth College, who crunch data from clinical trials the Food and Drug Administration uses to approve drugs. Then they spell out the risks and benefits — in clear, plain language — on a single sheet called a DrugFactsBox like this one:
Their product is different from a lot of the drug information sites on the web for two important reasons: It's totally independent, so it's not funded by pharmaceutical companies like, for example, WebMD is. And it's presented in a meticulous but digestible format that reflects the available data behind drugs in a way that's easy to understand.
People better absorb information presented in this way
"Direct-to-consumer pharmaceutical advertising is supposed to educate consumers about benefits and harms of drugs," said one of the site's founders, Dartmouth University physician-researcher Lisa Schwartz. "But we started to realize that while ads make big general statements about drugs, and they provide some data about side effects, drug companies are not required to explain how well drugs work."
A decade ago, she and co-founder Steven Woloshin (another Dartmouth professor) gathered data on how poorly the status quo was working for consumers. They found that few direct-to-consumer drug ads gave hard data on drugs' benefits — opting for vague statements that too often exaggerated them. Side effects were usually presented in an overwhelming list that people found difficult to understand.
So the pair started to experiment with an alternative. They were inspired by the simple nutrition fact box found on packaged foods and wanted to create something as easy to use for medicine. They tested their idea with consumers and found it genuinely helped people. In one study, published in the Annals of Internal Medicine, a national sample of study participants who looked at drug fact boxes overwhelmingly understood the risks and benefits of the medicines they were considering compared with control groups.
Private money is stepping in where the FDA is lagging
In 2009, an FDA advisory committee on risk communications voted unanimously that the FDA require a drug fact box for new products. Congress made a similar suggestion, asking the FDA to create concise and standardized summaries of the risks and benefits of drugs in the Affordable Care Act in 2011.
But the FDA didn't follow their advice, instead saying they'd need another three to five years to make a decision about how to proceed. Most recently, in 2015, the FDA announced it won't move ahead with drug fact boxes, but issued new guidance for better risk communication in direct-to-consumer drug ads. Independent researchers have questioned whether they'll actually be any clearer for patients.
Meanwhile, in 2012, the Robert Wood Johnson Foundation stepped in with grants — along with Consumer Reports and Dartmouth-Hitchcock — to help Woloshin and Schwartz create a sustainable model for their DrugFactsBox. And that was the beginning of the Informulary. Right now it's free to everybody in its beta format, but pricing will eventually change.
"We’re not trying to be anti-drug, anti-pharma, or pro-pharma," said Woloshin. "We want to make sure people have the information they need to make informed decisions."