Robert Shelton was a successful real estate developer who became wealthy creating buildings such as the Palm Beach Convention Center. But his world was rocked when his son was diagnosed with a rare genetic disorder. He then faced a quandary. He needed to find treatment for his son, but doing so would cost his family its privacy.
That dilemma ultimately spurred a business, Private Access, which is coming out of stealth today at the Health 2.0 conference in San Francisco. The company allows people with health conditions to describe their problems anonymously. It also posts news of clinical trials of new treatments. It thus allows medical researchers and potential research subjects to find each other.
The Aliso Viejo, Calif.-based business combines matters related to health, social networking, and search. The motto: “privacy and access in perfect balance.” It tries to reconcile the need for “data liquidity” with the need for data privacy.
How, for instance, does a sick patient find treatment options without revealing his or her condition to family members, who might “worry too much.” The patient may also need help with insurance intricacies but may not want to give the insurance agency a reason to deny coverage.
“The right answer on the release of information is different from moment to moment,” Shelton said.
Private Access has created a web site where people can describe their health matters and maintain precise control over who has access to the records. You can set parameters for what people see and how you want to be contacted.
There are four parts to the business. Recruit Source is a way for medical researchers to recruit patients for experimental trials. Trials Finder is a tool that lets patients search for possible treatments in ongoing or future trials. Records Agent lets people place orders for their health documents. And Privacy Layer is the platform that runs underneath the other applications.
Private Access will charge for the first three services but will give away Privacy Layer for free. Shelton said Recruit Source will cost $200 and take about 12 minutes to set up. That’s much less cost and time than alternative methods, which include searches that span six to 12 months that can cost $1,800 per subject recruited. The medical industry needs something like seven million people per year for trials.
Private Access also has a partnership with Genetic Alliance, a collection of 650 different disease advocacy groups, which will market Trials Finder to their members. With Records Agent, Shelton hopes to cut the costs of obtaining records by a factor of ten.
Shelton became interested in the idea as far back as 1998, when he filed a patent on the invention of a search engine for confidential information. The first patent was granted in 2006. The company’s suite of products will be ready for general availability in February.
The company has raised $2 million in friends and family money and has nine employees. Shelton’s second in charge is Marc Kirshbaum, who has a background in fraud and identity protection. He formerly worked at Experian. Shelton said his company will seek funding soon. He is concerned about the tough economic environment, but believes the company is solving a big enough problem that it will catch a good amount of investor interest.