Building Better Networks for Health Research

By Amy Davis, JD, MPH

Social media platforms such as Facebook, Twitter, YouTube, LinkedIn, and others have dramatically exposed new opportunities for conducting research and recruiting subjects. Although the application of these tools to the research enterprise has been cautious, they are used for a variety of purposes. Researchers are conducting observational studies of online behaviors and survey research; informing patient groups of relevant clinical trials; conducting community consultation in anticipation of emergency research (Stephens, et al.); locating subjects lost to follow up; and even designing studies through crowdsourcing public input. (Thompson) In addition, these tools are used by participants to learn about their diseases, to find emotional and practical support, to find clinical trials, and even to initiate their own studies. (Moreno, et al.) Social media websites have the potential to support the full spectrum of communication between researchers and the public more efficiently, cheaply, broadly, and deeply.
And yet these new communication tools have not made a significant impact on clinical trial participation. In fact, meeting enrollment timelines is on the decline to such an extent that one study estimates that 80% of trials fail to meet enrollment timelines, and 50% of them enroll one or no patients. (Zamosky) Moreover, only about three percent of cancer patients participate in clinical trials, and seniors represent only about one third of people volunteering for clinical trials, despite the fact that most studies involve drugs targeted at age-related diseases. (Katz, et al.)
As a cancer survivor and a beneficiary of clinical trials that relied on the participation of many thousands of research subjects, these are very disturbing statistics. Treatment will not advance without human subjects research. Failure to recruit subjects derails research studies, wastes resources, and dangerously slows the progress of drug development and health improvements.
When you consider that 86% of Americans have access to the internet; that most of those users (58%) are on Facebook; and that 52% use at least two social media sites (Pew Research), you would think that social media would be a boon for solving the enrollment problem. But, you would be wrong; at least so far. It turns out that a very small percentage of drug sponsors, for example, use social media for recruitment purposes. They use these tools for marketing their products but not for research. (Tufts Center for the Study of Drug Development)
So what’s the problem? Why have researchers not found social media to be an effective or attractive strategy for recruitment? Studies suggest that researchers are reluctant to use social media for recruitment or other research endeavors due to a variety of concerns. It is daunting to consider how to protect the integrity of research in an environment where there can be uncertainty about identity of respondents, potential for falsification of eligibility, ambiguity about data ownership, and challenges for protecting personal data.
Potential subjects, on the other hand, continue to fear being “treated like a guinea pig.” Worries persist that clinical trial participation is risky to one’s health, privacy and confidentiality, and social networking sites may not have the power to overcome or diminish (and indeed may exacerbate) these fears. (Research America) The data on who participates in clinical research bears this out. It is alarming that only a small percentage of Americans (16%) have participated, or have a family member who has participated, in a clinical trial. (Research America) More worrisome, is the statistic that 34% of Americans have not even heard of a clinical trial. (Thompson)
Given these barriers, it is surprising to learn that a large majority of Americans (72%) say that they would consider participating in research if their doctors recommended it, suggesting, perhaps, that patients are more trusting of information coming from this source than from the internet. However, only 22% of patients surveyed report that they have discussed participation in a clinical trial with their health care provider. (Research America) Physicians don’t seem to be talking to their patients about research. Similarly, patients who do participate in research don’t talk about it afterwards, despite reporting that their experience had been positive. Study participants don’t seem to recognize the importance of their contribution, or at least don’t want to bring attention to it. (CISCRP)
So to review: researchers are on the internet using social media; patients are on the internet using social media; researchers need more subjects; and patients are interested in participating research. However, the researchers and the patients are reluctant to find each other through this medium. Until technology and data collection systems improve to an extent where researchers feel more comfortable using social media platforms to seek out trial participants, maybe they should consider interacting with the public in an informal, yet informative manner. For example, Ken Getz, founder and chairman of Center for Information and Study on Clinical Research Participation (CISCRP) and director of sponsored programs, research associate professor (PHCM) CSDD, Tufts University School of Medicine, favors using social media for “engaging” more with patients rather than for recruitment. (Wechsler)
What would increased “engagement” look like? Perhaps one vision would be more researchers active on social media sites, simply “chatting” about their work; asking questions about the experience of others who also conduct research or who have participated in research. Then the general public could “friend” and “follow” the scientists, the patients, and the research coordinators, and discuss the research that is ongoing, or is needed. (Katz) And what if these discussions were occurring not only on patient-focused websites like PatientsLikeMe, Inspire, and ArmyofWomen, but on more mainstream sites such as Facebook, Twitter, and YouTube? Other possibilities include physicians providing more information to their patients about relevant studies — not so much for the purpose of recruitment but for education — and trial participants being encouraged to post, tweet, and blog about their experiences as research subjects. These kinds of conversations and collaborations do occur, and there are researchers and patients working on creating Facebook pages and Twitter hashtags that facilitate this communication. (Thompson) But perhaps if these conversations were more widespread, the percentages of people who know about clinical trials and who participate in them would increase.
The number of people who donate blood every year in the United States is over 9 million. (American Red Cross) The number of Americans who participate in clinical trials in a year is fewer than 3 million (IOM). Is there a way to tap into the evidently deep well of altruism that motivates blood donors for improving research participation? Perhaps mainstream social media has the power to do that.