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Social Networking Sites Embrace Clinical Trials

Patient recruitment is online and interactive.

By Deb Borfitz & Allison Proffitt

May 19, 2009 | More and more 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. It’s a recycled idea, one that was abandoned by Veritas Medicine. But earlier approaches failed in part because “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.

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

New social networking sites hold more promise, but can they successfully attract study volunteers, given limited awareness of trials or familiarity in social networking? As Getz puts it, “Is the value in their reach or in the data they are collecting on community members?”

Inspire was created four years ago to accelerate recruitment via social networking. “You can’t create a community just about clinical trials,” says CEO Brian Loew.  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, which Inspire has done in partnership with dozens of non-profit health associations. Trial recruitment began last year and Inspire already has four contracts in place, two with a major pharma for trials in osteoporosis, arthritis, and lung cancer. Loew says the early indications are good, adding that for one of the cancer studies, Inspire already has a community with ten times the number of members who meet the initial inclusion criteria.

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

Patients Like You
PatientsLikeMe focuses on five chronic-illness categories, including amyotrophic lateral sclerosis (ALS), and takes a different recruitment approach that is also winning support. 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. The pilot consisted of a monthly email sent to MS patients, encouraging them to visit the institutional review board- (IRB-) approved website ( for prescreening to determine eligibility. A Novartis spokesperson called the experience “very positive.”
Heywood is particularly intrigued by industry’s idea “to use our platform to create a micro-community for patients participating in clinical trials.” The idea would be to capture real-world data between site visits, providing useful information on safety, dosage, and perceived efficacy prior to regulatory submission. “This could ultimately lead to more accurate labeling and safer treatments for patients,” says Heywood.

PatientsLikeMe offers its sponsor partners a clinical trial awareness package, which might include aggregated data about patients in the community they’re targeting. “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 in a report last year). The experiment used validated outcome scales to quantify the patient experience on lithium while monitoring side effects and blood levels, allowing the company to amass what Heywood calls “the largest population of ALS patients that has ever been assembled for a study of this kind from which to analyze data.”

Click it Forward
Click It Forward, started by Acurian, uses established social networks to spread the word about trials. Facebook and MySpace users sign up for the application and as a user’s friends sign up, Acurian will donate money to one of 20 medical causes chosen by the user.
“It’s a two-fold mission,” says Scott Conner, Acurian’s VP of marketing, of the database that is currently 50 million strong. The first goal of Click It Forward is to “grow more acute indications… and build channels to people who have diseases or know someone who has a disease.” Conner’s second goal for the program is more expansive. “We want to increase public awareness of clinical trials.”

The free application is available through Users register and install the application on their Facebook or MySpace account. They then invite their friends and contacts to add the application as well. The application also integrates with Google Earth so that users can see a dynamic, visual map of their own Click It Forward network. Users gain points based on how many friends subsequently install Click It Forward. The money that Acurian donates to the user’s chosen cause is based on ten tiers of accumulated points.

The contribution angle is meant to, “encourage people to make it viral,” Conner explains. Acurian has committed to giving up to $50,000 per year to causes chosen by Click It Forward members. Members choose from over 20 common diseases or indications including breast cancer, fibromyalgia, migraines, pain, depression, and diabetes. Acurian will identify “appropriate, nationally recognized non-profits” at the end of the year to receive the money allocated to each cause. Members also have the option to choose secondary causes about which they are interested in receiving more information.

Acurian hopes to target two different demographics with Facebook and MySpace. “Facebook is an older audience,” Conner says, usually presenting with more chronic indications. MySpace, on the other hand, caters to much younger users. “They are the future of clinical trials,” Conner says, and he hopes that Click It Forward will work to, “condition them to the importance of clinical trials.”
Acurian manages their database of 50 million individuals who have expressed interest in clinical trials, listed their health problems, and given detailed contact information. The company works with trial sponsors in a “soup to nuts” fashion to run recruitment campaigns, screen patients, and track the back end of the process.

An Expanding Field
Online marketer Alliance Health launched its first social networking site, DiabeticConnect, last June to promote clinical trials. So far, 5% of its 17,000 registered members have opted to be notified of relevant trial opportunities, says CEO Stead Burwell. Alliance Health also drives traffic to trial screeners via email, newsletters, and online advertisements. 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, Reddit, Diggit, Craig’s List, YouTube, Facebook, and MySpace, plus multiple European sites.

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

Meanwhile, more than 1,000 clinical researchers and health care professionals are collaborating on the VisionTree Optimal Care (VTOC) Network. This site 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.” 

This article also appeared in the May-June 2009 issue of Bio-IT World Magazine.
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