Patients - and drug companies - turning to Inspire's online medical community

This isn't Brian Loew's first run at internet success.

During the thick of the dot-com mania 20 years ago, Loew and some friends built an online publishing company called Worldweb.net. It had 150 employees and $15 million in revenue but, like many start-ups from the era, it never posted a profit.

Worldweb.net created website software in the internet's early days for Elle, Car and Driver, the ill-fated George magazine and other publications.

"I was going to be rich beyond my wildest dreams," Loew said, recounting what his bankers had told him at the time.

Ten days away from the company's initial public offering, the go-go, dot-com age imploded and Loew's path to riches vaporized. The company, which bankers predicted could eventually be worth $1 billion, was sold off for a small fraction of that.

"Investors got their money back, but nobody got rich," Loew said.

The 46-year-old entrepreneur appears to be on to something with a better future this time around. His nine-year-old medical-website business, known as Inspire, has 1.1 million members, 33 employees, nearly $10 million in revenue and will turn its first profit this year.

Inspire essentially is a giant, online discussion community where people can use real or assumed names to share experiences, information and advice about their various medical conditions.

"Join many others who understand what you're going through and are making important decisions about their health," says the greeting on Inspire's website.

Loew and his company are attached to the surge of patient assertiveness, with more people questioning their health care and taking more of the responsibility out of the hands of professionals.

"Patientcentricity really matters," said Loew, who owns a big chunk of the company, along with investors.

Membership is free and increasing by 1,000 per day. Seventy-eight percent of members are women.

"Women are the chief medical officers of the home," Loew said. "Many of our female members represent a member of the family - husbands, fathers, fathers-in-law, siblings, children. So sometimes a woman would join and say, 'I'm a parent of a 'preemie,' a child of someone with a medical condition, a sister of someone else.' "

The company has a team of community moderators to make sure members get along on chats.

Revenue comes from advertising and from companies looking for hard-to-find patients to participate in clinical drug trials or market research.

Many of the research contracts come from niche firms hired by pharmaceutical giants to carry out drug trials or marketing studies on everything from psoriasis (one of the most common ailments among members) to cancer. The contracts can pay anywhere from $50,000 to $750,000, Loew said. It usually amounts to about $1,000 per patient for market research and up to $10,000 for clinical trials.

Inspire's clients include the top 10 pharmaceutical companies in the world, as well as most of the top 25.

"It matters to these companies what patients think and want and how they make decisions," Loew said.

Inspire doesn't advertise to promote itself. It gets exposure from many of its nonprofit-organization partners, such as the American Lung Association, the National Psoriasis Foundation and The Arthritis Foundation. Some members come from posting specific medical terms on Google search, which brings them to Inspire.

While revenue is split evenly between advertising and research projects, Loew said that there is more upside in research.

One quarter of Inspire's members, or about 250,000 people, are afflicted with rare diseases. They use online search to find people facing similar challenges. The pool includes people who suffer from relatively rare maladies such as Wilson's disease, pulmonary fibrosis and pancreatic neuroendocrine tumor or PNET, which killed Apple co-founder Steve Jobs. A large concentration of PNET sufferers are on Inspire.

The site also has 40,000 members in the community of Ehlers-Danlos syndrome, which is a disorder of the tissue surrounding joints.

"What that means is that if you are a researcher trying to study these things, you have trouble finding patients," Loew said. "And we have the patients. The researcher comes to us and we invite the member to participate."

Getting people to open up to researchers is handled delicately.

Loew said the key is honesty and transparency when approaching members about participating in studies: "Particularly when someone is sick, it's important that they think they are in control. A lot of people are being asked these questions at their most vulnerable moment."

Loew said Inspire emails members, notifying them of a study, describing what it is and informing them how to participate if they would like. "And if they don't respond, we ask more people," he said. "No means no."

If the patient wants to connect with the researcher, Inspire helps them meet and then steps out of the way.

The clients can get pretty specific about what they need. One pharmaceutical company came to Inspire for help in locating hemophilia Type B patients. The search had been going on for two years. Inspire found the patients in two weeks from its membership.

Loew has always had a science bent. He grew up in an upper-middle-class family in Fairfax County, Virginia. His mother taught elementary school and his father still teaches biomedical engineering at George Washington University.

Loew received his first computer at age 10. He attended the prestigious Thomas Jefferson High School for Science and Technology, then double-majored in physics and economics at GWU.

After graduating in 1993, he wrote computer code at the World Bank, then worked for Nature, the British science journal. He and some friends started Worldweb.net in 1993. The entire arc of the company, including the sell-off in 2000, left him depressed.

"We were so close to going public, and then the world changed," he said, looking back.

He was hired by The Washington Post to help with technology strategy.

The idea for Inspire was born at a 2005 event sponsored by the pharmaceutical industry, in which Loew's wife, an organic chemist, was employed. Several people at the event were in the research-and-development end of the drug business.

"These R&D companies with gigantic budgets described their biggest problem as recruiting patients for clinical trials," he said. "Privacy in America makes it appropriately illegal to buy lists of patients."

A light bulb went off, he said: "What if you create a social network for patients and caregivers and allow them to raise their hands if they want to participate in clinical trials?"

Loew wrote a business plan to build a website with communities of patients organized by issues: prostate cancer; lung cancer; psoriasis; infertility; preemies.

"The idea was to create a safe, supportive community for patients to gather. If you were diagnosed with something serious," he said, "we knew a community could help with those things. Patients seek other patients to get support and compare notes."

Inspire now inhabits a 6,000-square-foot office in Arlington. Loew expects it to turn its first profit this year.

And Worldweb. net? It lives on. Some former employees bought the company back. To this day, it writes the secure, daily briefing for the Joint Chiefs of Staff.