Social Networking Sites Have Myriad Trial-Related Uses

By Deb Borfitz

March 2, 2009 | A growing number of online social networking sites are assembling groups around particular disease types as a way of simulating interest in clinical trials and the data they’re collecting on members, according to Matthew Holt, founder and author of The Health Care Blog and co-founder of an annual Health 2.0 conference. “Some sites are talking about [crafting] business plans to help recruit clinical trial participants.”

It’s a recycled idea, disbanded by Harris Interactive a year or two ago. A patient-to-trial matchmaking service was also tried and discontinued by Veritas Medicine. These earlier approaches failed for a number of reasons, including the fact that “many steps in the recruitment and retention process relied upon other players outside the control of the matchmaker companies,” says Kenneth Getz, chairman of the Center for Information and Study on Clinical Research Participation.

Many patients were also disappointed to find a “highly limited listing” of clinical trial options and were “uncomfortable divulging personal information to for-profit companies,” says Getz. Moreover, low consumer awareness of clinical trials made it difficult to broadly reach sufficient numbers of study volunteers. “Ultimately, the per-patient cost of online matchmaking couldn't justify the investment."

Brian Loew
New social networking sites, “riding the wave of user-initiated online interaction,” hold more promise, says Getz. But it remains to be seen if they can successfully attract study volunteers across a variety of clinical research studies, given that awareness and trust in trials is still low and social networking sites have yet to develop the ideal business model. “Is the value in their reach or in the data they are collecting on community members?” Study sponsors and clinical research organizations will “determine whether the return-on-investment is there” over the next couple of years, he adds.

Inspire, created four years ago specifically to accelerate recruitment via social networking, is confidently giving it a shot. Inspire’s approach is to let social networking serve as “a mechanism for attachment,” says CEO Brian Loew. “You can’t create a community just about clinical trials.” Inspire can deliver “high quality patients,” screened based on a protocol’s inclusion and exclusion criteria, because it has a pre-existing relationship with members who have volunteered to be trial participants.

The first step was to build online communities around a particular disease or condition, which Inspire has done in partnership with more than three dozen non-profit health associations, says Loew. The trial recruitment service didn’t get added until last year and Inspire already has four contracts in place, two of which are with a top-five company. The contracts are for an osteoporosis and arthritis trial as well as two lung cancer studies.

“The trials are underway right now and the early indications are good,” says Loew. “For one of the [lung cancer] studies, we already have a community with ten times the number of members who meet the initial inclusion criteria.”

To the delight of trial sponsors, Inspire also offers a “quality assurance” service whereby trial participants are surveyed about their satisfaction with the investigative site, says Loew. Responses get reported, in aggregate, to companies.

Legally speaking, the fact that Inspire owns and operates the communities assuages industry’s liability concerns regarding conversations about off-label use of their products and adverse events, says Loew.

PatientsLikeMe—focused on five chronic-illness categories, including amyotrophic lateral sclerosis (ALS)—takes a different recruitment approach that is also winning industry fans. This no-advertising venue efficiently targets “those who are both eligible for and interested in information about clinical trials,” says president and co-founder Ben Heywood.

The U.S. Medical Outsourcing Group at Novartis partnered with PatientsLikeMe for a pilot multiple sclerosis (MS) clinical trial awareness program launched last May to enhance recruitment efforts for the FTY720 FREEDOMS II trial, according to a company spokesperson. The pilot consisted of a monthly awareness email sent to MS patient members, with the aim of having them visit the institutional review board- (IRB-) approved website ( and be prescreened to determine potential eligibility. The pilot also included a FTY trial awareness webpage on the PatientsLikeMe site that included IRB-approved copy and links to, eligibility screener, and The experience was “very positive,” the spokesperson adds. “Increased enrollment in the FTY study was not a primary driver for the pilot program, but rather a pleasant and well-received result.”

Study Enhancement

Most intriguing to PatientsLikeMe is “the suggestion by industry to use our platform to create a micro-community for patients participating in clinical trials,” says Heywood. “The goal would be to capture real-world data that supplements information between site visits. Additional safety, tolerability, and perceived efficacy data can help inform marketing and research teams in preparation for regulatory submission. This could ultimately lead to more accurate labeling and safer treatments for patients.”

PatientsLikeMe offers its trial-sponsoring partners a clinical trial awareness package, which might include aggregated data about patients in the community they’re targeting, says Heywood. “We are also in discussions with pharma about collaborating to supplement trial data they collect with patient outcome information.” PatientsLikeMe can also tell its partners about how their approved treatments are being used in the real world.

Interestingly, PatientsLikeMe initiated the first “patient-driven, real-world natural experiment” to learn if lithium arrests the progression of ALS as suggested by a February 2008 article in PNAS (Proceedings of the National Academy of Sciences). The experiment used validated outcome scales to quantify the patient experience on lithium while monitoring side effects and blood levels, says Heywood, allowing the company to amass “the largest population of ALS patients that has ever been assembled for a study of this kind from which to analyze data.”

Patients often can’t or don’t want to wait the years it takes for evidence to emerge from a formal clinical trial. In “merely months,” and for “very little money,” the study on PatientsLikeMe produced enough information to analyze, says Heywood. These types of experiments can provide “credible direction as to when a clinical trial should be conducted. As a result, patients will have a direct voice into what types of research deserve attention and significant investment.”

An Expanding Field

Online marketer Alliance Health launched its first social networking site, DiabeticConnect, last June to promote clinical trials and to date 5% of its more than 17,000 registered members have opted to be notified of trial opportunities relevant to them, says CEO Stead Burwell. On behalf of a half dozen specialized recruitment agencies, Alliance Health also drives traffic to trial screeners via email, newsletters, and online advertisements. But the trial matching service is three times more effective than other types of interactive channels in terms of successful screens, he adds. This year, Alliance Health plans to launch a new networking site every four weeks, including ones for sleep disorders, obesity, chronic pain, and heart disease.

Inclinix has learned firsthand that social networking sites can be highly effective and affordable recruitment venues, says Chief Marketing Officer Chris Sleat. “Many sponsors fear bloggers will turn against their trial, but they’ll blog positive about [a company] as long as [it is] open and honest.”

Among the sites favored by Inclinix are Twitter (a collection of blogs), Reddit, Diggit, Craig’s List, YouTube, Facebook, and MySpace, plus multiple European sites. Some of the others fall short when it comes to driving traffic to their content and then giving visitors a reason to return, says Sleat.

For well over a year now, patient recruitment firm MediciGlobal also has been successfully using social networking sites like Facebook, MySpace, and Twitter, according to president and CEO Liz Moench.

Meanwhile, more than 1,000 clinical trials researchers and health care professionals are collaborating around specific studies on the VisionTree Optimal Care (VTOC) Network. The no-ad site, launched late last year, allows physicians to “interact, refer, and discuss current issues and clinical trials” at no charge, says Adam Hawkins, director of technology. It integrates with Twitter and YouTube to share blog posts, files, and links between members. “We are working with partners who have a large patient population to allow for outreach and recruitment into clinical trials through the VTOC Network. You will see some of these in coming months.”


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