Patients work together to amass health data

Aggregate info reported back to members

The CureTogether website allows participants to log in anonymously to answer questions about diseases or conditions they may have and the various treatments they have used, along with the effectiveness of those treatments.

The 2-year-old site, based in Mountain View, CA, aggregates that data for reports published on its website. For example, the company recently ranked the effectiveness of various treatments used by 260 CareTogether participants who suffer from allergies. Written reports are supplemented by easy-to-understand infographics.

Co-Founder Daniel Reda, BSc, says the goal was to create an alternative to the traditional health website templates he'd seen on the Web.

"In our experience, you'll typically find a WebMD type of site where there's information provided by experts, or you'll find online communities where patients come together at a condition level to share stories about their experiences," Reda says.

He says typical online health communities provide a lot of anecdotal information, but little in the way of numbers.

"We wanted a site where you could find out how many people said they'd tried a given treatment, and what percentage of them had a positive experience," Reda says.

International reach

The site started with three conditions, all in the area of women's health, and has grown to include information about more than 600 different conditions, Reda says. More than 15,000 members in 112 countries have contributed more than 1.4 million data points (snippets of information gleaned in surveys).

Reda says organizers of the site consulted ethicists when they first began, who urged transparency about how the data would be used and minimizing the collection of personally identifiable information.

"A key part was deciding not to show individual member data, to only show aggregate information," Reda says. "Our site has been from the beginning about sensitive conditions — we started off with women's health conditions that many women sometimes don't even feel comfortable talking to their doctors about."

A person signs up by providing an e-mail address, which doesn't go any further than CureTogether's database, Reda says. The company sends e-mails about updates on any conditions the person specifies, and participants have the ability to opt out of that use.

CureTogether has worked with pharmaceutical companies and individual investigators to send IRB-approved recruitment messages to members, but doesn't release their e-mail addresses. Beyond the e-mail address, the company collects almost no demographic information. Patients can opt to submit their gender, country and Zip code.

"There is no way to view an individual member's information," Reda says. "We are always mindful of protecting patient privacy."

Self experiments

When an outside investigator collaborates with CureTogether, the project is reviewed by the researcher's IRB and all messages distributed must contain IRB-approved language. While Reda expects those collaborations to continue, he also sees potential for growth in the field of self-experimentation.

Currently, members can use tools to help track their symptoms over time. Eventually, Reda says, the company wants to help people set up their own experiments to test the effectiveness of interventions.

"For example, a patient might suspect that a certain vitamin might be having a certain affect on (his or her) headaches," he says. "We would help do the experiment properly, in terms of having a baseline of a few days of not trying the vitamin, and then (once the person starts taking it) we could help chart any symptoms.

"We can provide them with the tools where we can do the complex math that would give them a sense of how statistically significant something is," Reda says. "So that they would know whether it's a real effect or whether it could be just explained by chance."

He says there is potential for expanding this service to allow different people who want to undertake similar experiments to work together, even offering to randomize to different treatments by computer if they wish.

Reda acknowledges that this starts to raise questions about safety and risk that traditionally have been overseen by IRBs. He says CureTogether is part of a group known as The Quantified Self (QS), which gathers people interested in self-data collection and experimentation.

In a recent post on the QS blog, Reda raised the question of how to handle ethical review of self-experiments that invite others to join. He argued that the QS community should either assemble its own ethical review board or figure out a way to help like-minded people pursue their experiments without "advertising" studies in ways that too closely resemble research recruitment.

"It would be truly tragic if the nascent QS movement, and its promise for social benefit, became overburdened with regulatory oversight for failure of its pioneers to take appropriate safety precautions," Reda wrote.

For more information about CureTogether, visit the company's website at www.curetogether.com.