Facebook and clinical research may sound like strange bedfellows, but researchers from academic settings and the pharmaceutical industry have started to jump onto the social media bandwagon. Many researchers say social media can educate patients about the value of clinical research and encourage them to participate in studies.
The success of clinical research hinges, in large part, on the ability to recruit patients. Yet, targeting the right patients and retaining their participation is one of the greatest challenges researchers face. "The percentage of people getting involved in clinical trials is pretty low, and that's a huge problem for us in this country," said Naz Sykes, executive director of the Dr. Susan Love Research Foundation.
According to a pharmaceutical industry analysis conducted by research firm Cutting Edge Information, an estimated 80% of trials fail to meet enrollment timelines, with as many as 50% of research trial sites enrolling one or no patients. Not only do failed recruitment efforts hamper basic research and delay medications making their way to market, the pharmaceutical industry estimates that it loses as much as $8 million in revenue for each day a drug is delayed.
To prevent such losses and attract more patients to clinical trials, researchers increasingly are turning to social media.
Putting Social Media to Use
Although a wide range of researchers use social media tools, each group puts its own spin on how it employs the technology.
Inspire.com is one of many online communities where patients with a wide range of illnesses can connect, share information about treatments, discuss reactions to medication and offer support.
It's also a forum through which patients learn about clinical trials. The company works with pharmaceutical clients to help recruit patients who have agreed to be contacted for clinical research opportunities.
"It's very controlled outreach to those patients who opted in to receive the information and to connect them directly to trial sites," said Amir Lewkowicz, co-founder and vice president of partnerships for Inspire.
The company, which was launched about seven years ago, has seen the pharmaceutical industry evolve from an initial reluctance to connect with patients via social networking websites to an eagerness to embrace the new tools.
"When we first started, not a lot of people knew what we were talking about, so it was about educating [the pharmaceutical companies] about this," Lewkowicz said. Although it's been slow going, he noted that all the big drug companies use social media to some extent at this point.
Quintiles -- a large contract research organization that conducts clinical trials globally on behalf of pharmaceutical companies -- has two large online patient communities at the center of its recruitment strategy. MediGuard.org provides no-cost medication safety monitoring to more than 2.5 million registered users, and ClinicalResearch.com provides social networking opportunities and information about clinical trials to about 165,000 patients.
Quintiles uses both sites to recruit participants for clinical trials.
"When people sign up, they can opt in for information about research opportunities," explained Jodi Snare, senior director of digital strategy with Quintiles. "One of the great things about social networks is they allow you to really target a population by interest and geography" she said.
The Dr. Susan Love Foundation -- which works to eradicate breast cancer through research, education and advocacy -- takes a slightly different approach to patient recruitment.
One of the Foundation's main programs -- Army of Women -- uses social media to connect women who have had breast cancer, as well as those who have never been diagnosed, with breast cancer researchers. "We are recruiting for basic research studies looking into cause and prevention or quality of life issues for breast cancer survivors," Sykes said. The organization does not recruit for clinical trials aimed at testing new drugs.
Women are encouraged to register online to receive email updates announcing new research studies in the area of breast cancer. With an ultimate goal of recruiting one million women interested in being a part of breast cancer research studies, the Foundation has signed up 360,000 members for its online community since the program began in 2008.
Rather than carefully matching members with a research project based on geography or clinical characteristics, the Foundation encourages members to forward the study to someone they know who might be appropriate for it, even if they themselves are not. The Foundation also openly encourages its members to post the study on Facebook, tweet about it or write about it on a blog.
"We want to make sure every study becomes viral," Sykes said.
The effort seems to be paying off. So far, 61 researchers have successfully recruited for their studies by connecting with Army of Women.
Another way researchers are recruiting for clinical trials is through direct outreach on social media channels.
Anas Younes -- a professor at the University of Texas MD Anderson Cancer Center's Department of Lymphoma/Myeloma -- learned about Twitter approximately three years ago and quickly realized its potential to reach people with whom he'd otherwise never have the opportunity to connect. Soon after starting a Twitter account, he became the first oncologist to create a patient community on Facebook.
"We used to get referrals from oncologists, but we weren't able to reach directly to patients," he said.
Today, he tweets about cancer, posts information about lymphoma/myeloma on Facebook, connects through YouTube and contributes to MD Anderson's Cancerwise blog.
His purpose is twofold, he said. "One is self-serving in that patients come directly to you [for trials] and the second is creating awareness of clinical trials."
Maintaining Relationships for the Long Haul
One of the best ways to minimize the challenge of finding participants for clinical research is to avoid starting from scratch at the beginning of every study.
Social media -- which is all about establishing and maintaining relationships -- has helped researchers not only connect to possible study participants, but also create the infrastructure for lasting relationships.
According to Snare, creating online forums where patients can access information and connect with each other serves a few purposes: First, people who applied but didn't qualify for a trial aren't left feeling abandoned. Second, study sponsors avoid the costly and time-consuming process of finding and screening potential trial participants.
"When we follow the patient experience through screening, if they don't qualify they're just turned away," Snare said. "Would we be able to interest them in a study later on? Maybe, maybe not, but now we catch them," she said.
Lewkowicz said early on he was surprised to see that once a trial is completed, pharmaceutical companies lose their relationship with patients entirely. "Everyone realizes now it's a long-term thing, but [they] didn't have mechanisms before to [maintain relationships]," he said.
Education is another way of keeping patients engaged and leaving the door open for possible participation in research down the road.
"What we're trying to do is get women educated about science and research before they get breast cancer and get them involved in the research process," Sykes said."Unfortunately, some of these women will go on to get breast cancer. If we can educate them about the research process, then when they do get diagnosed, they are more likely to seek out clinical trials," she said.
Results by the Numbers
It's cool to be on Facebook and Twitter, but does it work?
Hard numbers showing social media's effect on patient recruitment efforts are hard to come by. However, the anecdotal evidence is powerful.
According to Sykes, one researcher reported attracting one to two patients per week using traditional recruitment methods. After partnering with the Dr. Susan Love Research Foundation's Army of Women, the study recruited 1,200 participants per month.
"It has shown that it fast-tracks the research and saves researchers tremendous amounts of money," Sykes said.
Inspire worked on what Lewkowicz described as a "hard-to-recruit" trial for late-stage lung cancer with only five sites throughout the U.S.
"They gave us a year to recruit and needed only 10 or 11 people," he said. "We found them about 14 or 15 people within three months."
More To Come
There's no doubt that the use of social medial to educate and recruit patients for clinical research will grow, with efforts to improve the old way of doing things constantly underway.
"So much is invested in recruitment campaigns, yet protocols are so complex and it's so difficult to qualify for studies that it's a waste of money and a bad experience for patients and investigators industrywide," Snare said of the current system. With the use of social media, she said, "I think we can fix this."