Recognizing a need for innovation, the government has made some of its raw data available on healthdata.gov., a central database where developers can get information for Web sites and apps. So far, the database includes everything from food safety recalls to fatality statistics, but the challenge remains the dearth of comparable information.
“Imagine buying a ticket on an Expedia-type travel site where the only metric available is on-time arrival but not the cost,” said Bob Kocher, a partner at the venture capital firm Venrock and a former White House health policy official. “It’s hard to aggregate something useful right now.”
Some information, such as the fees insurance plans negotiate with doctors and hospitals, are kept under wraps because the industry considers it proprietary information, experts said.
“If all the information is public, everyone will rush to the lowest reimbursement level,” said Liz Boehm, an analyst at Forrester Research. “Hospitals — in terms of costs — don’t want every insurer negotiating down to the rest.”
But as health-care entrepreneurs harness the power of social media, they are unlocking other information. And many are making money not through the traditional advertising model, but instead are getting revenue from drug companies, doctors and hospitals.
Here are some players who have jumped into the race to innovate:
Cyrus Massoumi, suffering from a sinus infection, had an eardrum rupture on a flight home to New York after a business trip.
At the time, he was a consultant at the McKinsey consulting firm and had a gold-plated health insurance plan. Massoumi searched for an ear, nose and throat doctor on his insurer’s Web site. Some were booked. Some had moved, died, stopped taking new patients. It took him days to find a doctor.
The incident inspired Massoumi to develop ZocDoc, a tool that connects patients with doctors. In more than a dozen cities, including Washington, users can type in their Zip code, health insurer and the type of doctor they are seeking and then hit find.
The ZocDoc site (and app) pulls up a list of nearby doctors and the time slots available. To book, just click. Each doctor’s profile, including the languages he or she speaks, are available along with reviews from other ZocDoc users.
The service is free to consumers, but doctors pay a subscription fee each month to participate, said Oliver Kharraz, the firms’s co-founder and a doctor.
The company buys commercial databases to solicit doctors who may want to participate, but even those databases are often not accurate, Kharraz said. A team scrubs the data and regularly verifies information such as what insurance a doctor accepts.
“It goes to show that what’s missing in health care is reliable information on doctors,” he said.
When three MIT engineers formed PatientsLikeMe, they made a decision not to rate doctors. In this community, the seriously ill rate their experience.
“It’s a social network,” said Jamie Heywood, one of the co-founders. “You tell us what conditions you have. We ask rigorous questions about those conditions the way you would at a clinical trial, and then we allow patients to compare those conditions.”
Patients can track each others symptoms, moods, quality of life and the dosage and side effects of the medications they take. The information is compiled in detailed charts and graphs that are updated each time a patient adds information. The company has even done a clinical-trial-type study based on the experiences of patients on its site who used lithium to treat amyotrophic lateral sclerosis (Lou Gehrig’s disease).
“The more you share, the easier it is to find other patients like you,” the site says.
Heywood created the company in 2004 with his brother Benjamin and longtime friend Jeff Cole. Five years earlier, another Heywood brother, Stephen, had been diagnosed with ALS. The family’s quest to help him inspired the Web site. Stephen’s profile is still on the site. He died in 2006.
The firm makes money in part by selling trend information to pharmaceutical companies, who invest billions of dollars a year in research.
“By selling this data and engaging our partners in conversations about patient needs,” Heywood said, “we’re helping them better understand the real-world medical value of their products so they can improve them.”
Peter Hudson and Wayne Guerra, co-founders of Healthagen, developed a free smartphone app called iTriage based on their work as emergency room doctors.
The technology aims to help people sort through all sorts of decisions when time is of the essence.
“Most people don’t experience something and say: ‘I have appendicitis,’ ” Hudson said. “They experience something and say: ‘I have lower abdominal pain.’ Then the next question is: ‘What is causing it?’ and then, ‘Should I be worried? Where should I go?’ ”
The app tries to offer answers by enabling people to look up information about their symptoms, find possible causes, determine the type of care they need (emergency room? urgent care? specialist?) and then find the closest provider. In some markets, users can check out waiting times or check-in ahead of arrival.
Aetna bought the company in September for an undisclosed sum, though it remains an independently run subsidiary that’s available to all consumers.
Health-care providers pay the company for the ability to share certain types of information with patients who use iTriage, such as waiting times.
Gideon Mantel, an Internet entrepreneur for two decades, says he sees value in building on top of what’s already available online.
Five months ago, his company launched Treato, a Web site that scans social media sites all over the Web for patient comments on medications. The company analyzes the comments to identify side effects, compare competing medications and learn about off-label uses of the drugs. It aggregates the information into charts and graphs.
For example, type “Lipitor” into the site and a bar chart pops up ranking the top issues posted about this cholesterol medication. Click on muscle pain, which tops the list, and the site directs you to snippets of the comments or the posts in their entirety from the originating site. Click on “compare drugs” and up comes a similar list of side effects reported on other medications, even fish oil.
The idea came about when Mantel’s daughter was preparing to have knee surgery. Anxious to learn more about the procedure, he went online. The medical discussions were too technical, he said. More insightful were comments made by patients and their loved ones.
Mantel’s company, First Life Research in Israel, aims to make its money by selling data to pharmaceutical companies.
“People will struggle with the business models,” Mantel said. “But in the end of the day, there will be a significant victory.”