In a recent post on patient recruitment and social media, I discussed the limited upside and undiscussed risk of using social media for patient recruitment.
In particular, the post cited a recent white paper finding, which reported that “fewer than 20% of e-patients were most comfortable receiving clinical trials messages via Facebook wall or Twitter profile.” Though patients are often successfully recruited with ads on social media platforms, a small minority of e-patients are comfortable receiving clinical trials information via their social media feeds.
After posting the article on Google+ (find my profile here), Simon Goodacre posed this question in response:
Do you think that patients will become more receptive with time? I’m thinking of the days when people didn’t look to social media for news, career opportunities etc. I wonder if clinical trials will eventually become acceptable social conversation too.
Though impossible to answer with certainty, this question certainly deserves discussion by those of us in clinical research who have an interest in social media. My thoughts follow, but I hope you will chime in (pretty please) with a comment below.
Loss Aversion and the Status Quo Bias
Two psychologists, Daniel Kahneman and Amos Tversky (1979), published a paper first demonstrating what was dubbed “loss aversion.” Put simply, losses loom larger than gains during the decision making process. In other words, people strongly prefer to avoid losses than to acquire gains.
This theory has been tested in multiple ways over the years, and because loss aversion permeates all aspects of our lives, it can be used to understand decision making in areas as diverse as romantic attachment to investing.
In the healthcare arena, for example, one study tested the effectiveness of breast self-examination pamphlets when the language was framed in terms of loss as opposed to gains. The study found that 57% of women who received a loss-frame pamphlet reported an increase in self-examination, as opposed to 38% of those given a gain-frame pamphlet. Studies have also tested the impact of loss aversion on physician decision-making, with some interesting results.
A consequence of loss aversion is that people have a strong tendency to stick with the status quo because the potential loss of a change looms larger than the potential gain. Samuelson and Zeckhauser (1988) demonstrated this effect and dubbed it “status quo bias.”
A common truism is that people fear change, except that, well, it’s not true. People fear loss. You’d be hard-pressed to find anyone that fears winning the Powerball, though such an event would undoubtedly be a huge change for most people.
For individuals to consider a shift away from the status quo, the potential gains must greatly outweigh the potential losses. In some cases, only the threat of loss due to inaction is ultimately capable of spurring change.
Decision Theory and Social Media
Loss aversion and status quo bias provide a helpful lens for understanding social media adoption. Presumably users will be receptive to getting information via social media once they perceive the potential gains to greatly outweigh potential losses.
As Simon pointed out in his question to me, people increasingly turn to social media for news and career opportunities, which is a relatively recent phenomenon. I’d argue that this shift is occurring because social media has demonstrated the potential for substantial gain and minimal loss when used in these areas.
Social Media for News and Career Information
In the case of news, I’ve learned of countless stories on social media before they hit the mainstream media. The most famous example is perhaps the death of Osama bin Laden, a story I watched break on Twitter before the official announcement came. But what’s more valuable are the multiple “micro” news items that I get daily via my social media profiles, which I’ve curated according to my interests. Had I just stuck to my status quo, traditional search and Internet browsing, I would not be receiving much of this valuable information.
Similarly, the use of social media for exploration of career opportunities represents a huge improvement over the status quo. I have yet to meet a person that relishes using search engines or traditional job sites to seek employment. The best career opportunities often come through personal networks, and social media has made the ability to cultivate these networks even easier.
Meanwhile, the potential loss of using social media for news and career exploration is minimal. The two most common concerns I hear about social media use generally relate to fear of wasting time or fear of looking like an idiot. But neither of these concerns are particular to the consumption of news or career information via social media specifically, but rather social media (or life, for that matter) generally. For those already using social media, the consumption of news and career information via social media has much upside and little downside.
The Social Media Adoption Tipping Point
We live in an information society, and any tool that allows for efficient consumption of that information is very valuable. Social media has proven especially conducive to the consumption of news and career information, allowing users to leverage that information to their benefit.
People who don’t use social media to consume news and explore career opportunities, in many ways, are at a disadvantage when compared to their social media loving peers. The potential loss of not using social media to consume information on news and careers is greater than the potential loss of using it. As this dynamic has become more visible to the mainstream, the use of social media for these purposes has become more mainstream as well.
Social Media Adoption for Clinical Trials Information Seeking
In order for e-patients to be comfortable receiving clinical trials information via social media, the potential gains will have to greatly outweigh the losses, reaching a tipping point as has occurred with news and career information.
Potential Gains for Prospective Patients
For e-patients, traditional search and Internet browsing remain the status quo of online health information seeking. For those seeking clinical trials information, in particular, clinicaltrials.gov is the most comprehensive and unbiased source of information, though other websites have great information as well.
Many patients will not be aware of the existence of these trials-related websites, but they don’t necessarily need to be. A simple web search will uncover them. As an example, I just searched for “clinical trials” in Google and pages on clinicaltrials.gov occupied the top three spots of the Google search results. Google’s positioning of the site, as well as the .gov TLD, signals to prospective patients that clinicaltrials.gov is an authoritative source for clinical trials information.
Now compare the status quo to a study-specific social media profile. By and large, social media profiles about clinical trials do not provide near the value of search engines for consumption of trial information. This lack of value is partially the product of the inherent challenges of using social media for clinical trials, but it’s also because the industry has done a horrible job of providing value to prospective patients. Thus, patients typically have little to gain from using social media to consume clinical trials information.
One exception is health social networking sites like Patients Like Me. By discussing their health issues with others, patients gain information that search engines cannot provide. Though these sites may contain information about clinical trials, it’s important to note that the value proposition of these sites has nothing to do with clinical trials. The value for patients is in better understanding their health issues and feeling empowered to make educated health care choices, of which clinical trials participation is one.
Until patient recruitment professionals can offer a compelling value proposition far superior to that offered by the status quo, most e-patients will remain uninterested in receiving clinical trials information via social media.
Potential Loss for Prospective Patients
Just hours after news of Amy Winehouse’s death hit the media, scammers took to Facebook. Some claimed to have recent video of Winehouse smoking crack and others claimed to have “shocking” footage of Winehouse mere moments before her death. These scammers are not lacking in creative ability or a willingness to exploit.
Social sites are doing a better job of monitoring advertiser quality, but scammers continue to find their way into social media feeds. This example is one of many in a long line of scams that take place on social media sites on a daily basis.
Though nowhere on the Internet is completely safe from scams, search engines like Google have made it much more difficult for the dregs of Internet society to prey on unsuspecting victims. For example, Google has been warning users about potentially unsafe sites since 2006. Most recently, Matt Cutts of Google announced that the search engine was even helping users detect viruses on their computer.
Meanwhile, a significant portion of patients have concerns about health privacy. A 2009 HIMSS survey found that though consumers are “increasingly embracing innovations that enhance self-care, …38% are very concerned about the privacy and security of personal health information.”
Common health privacy concerns, coupled with the prevalence of scams on social media sites, have created an environment in which many e-patients are reluctant to receive clinical trials information via social media. The potential for loss is much too salient.
The Patient Recruitment Tipping Point for Social Media
In conclusion, the clinical research industry needs to demonstrate compelling gain and minimal loss for patients receiving clinical trials information via social media. Without this progress, e-patients will continue to view the status quo, traditional search and Internet browsing, as a preferred method of receiving clinical trials information.
I can’t say whether e-patients will ever fully embrace social media as a tool to receive clinical trials information, but if they do, it will be because the industry has given them a reason to do so. To move forward, clinical research professionals must consider ways to provide value that the status quo does not, while protecting patients from potential loss.
Now it’s your turn to chime in. Will patients get more comfortable with receiving clinical trials information via social media? What needs to take place for that to happen? Please put your thoughts below.
Carmen Gonzalez says
After having surveyed over 80 sites last year about their use of social media for patient recruitment, I can tell you the value proposition depends on therapeutic area and on the degree of alignment between the patient and the clinical site. For sites that have an economic incentive to use social media for recruitment and sufficent staff resources to pursue it, it makes sense to explore the medium. When their target population is actively engaged on social media, then clinician and patient have created that perfect union online. This is not the case for most sites, as they draw most of their patients from their databases (ideally) and use traditional methods for recruitment (media and outreach). Moreover, in some diseases or conditions, the patient profile reflects a group that is not looking for health information through social media channels (e.g. privacy trumps social engagement for women regarding uterine fibroids). Only where there is a coming together of interests between clinicians and patients will social media find a digital home for patient recruitment.
Thanks for taking the time to share insights from your survey! I completely agree that there are a lot of variables to consider with social media. This post was painted with a very broad brush to try and understand where a “tipping point” might occur, but in practice, social media’s potential will vary on a case-by-case basis. The factors you mention are very important.
Eduardo Carcausto says
Social media can t replace teh investigator-patient relation which develops during the first medical consultation; it works only for persons who have more undestanding of their own health, and are seeking for other alternatives. A pop-up. or link inside a social media web like Facebook, is seen more amicable