PharmExec Blog

Patient Recruitment via Social Media: Lessons Learned

By Marylyn Donahue.

All-told the Mayo Clinic’s recent pilot study on clinical trial patient recruitment using social media and online networks not only helped researchers assemble large and demographically diverse patient groups more quickly, but also less expensively than they could through other means.

“This study is a prime example of patient-initiated research that could be used by other health care professionals and institutions,” conclude the authors of the Mayo report.

But can the Mayo Clinic’s pilot study really be used “by other health care professionals and institutions”? Was the success of their social media recruitment so easily translatable? Or was their pilot study the result of a perfect storm—a series of factors coming together to make it just the right opportunity for social media recruitment, and anything but commonplace?

What made it a Perfect Storm?
In an article in Digital Strategy & Patient Recruitment for Clinical Trials, Rahlyn Gossen examines key patient recruitment factors that resulted in the Mayo’s pilot study’s success and a perfect social media fit. A former clinical research coordinator who now has her own firm, Rebar Interactive, Gossen lists these six factors:

  • Research focusing on a rare disease
  • Concentrated and organized patient population
  • Patient-initiated research and ownership for success
  • Favorable demographics for patient recruitment via social media
  • Widespread positive brand awareness (Mayo Clinic)
  • Lack of geographic constraints

“In some cases, clinical research professionals can mimic the factors contributing to Mayo’s success,” says Gossen. “But in most cases, the possibility for successful social media recruitment will largely be the result of static factors like therapeutic indication, patient population, study design, and geography.”

“Before undertaking a social media campaign for patient recruitment, it’s imperative that clinical research professionals identify pertinent variables and determine whether those variables are well-aligned with a social media recruitment campaign,” says Gossen.

It is also imperative that whomever is behind the effort is equipped with the social media skills enjoyed by the Mayo Clinic (you only have to go to their website for a glimpse of their media expertise and sense of design). They must also be motivated by more than just a desire to sell a social media service.

“The reality is that, in many cases, patient recruitment via social media will be an uphill battle,” says Gossen. “But all is not lost. You can still recruit patients who frequent social media sites with advertising on those sites, thereby eliminating the challenges of patient recruitment on social media websites.”

Gossen told Applied Clinical Trials that it is important to distinguish between social media and advertising on social media platforms. “Social media is by nature a dialogue and requires a very different strategy and skill set than online advertising, which is more of a one-way broadcasting medium. An example of this distinction in practice is the difference between, say, putting up a Facebook page and conversing with those who are commenting versus putting up ads on Facebook. This distinction, I’ve noticed, is unclear regarding terminology.”

A tactical advertisement on Facebook, however, can be targeted among the site’s hundreds of millions of users. Its offerings for advertisers also can be highly targeted to specific geographic areas. And with such a large population, Facebook can reach a high percentage of potential patients across all levels of income and education. Traditional media can’t even touch those results.

Nevertheless, the uphill battle in social media recruitment was confirmed last spring by a survey conducted by Blue Chip Patient Recruitment. The study found:  Of 179 adults who were queried through postings in online health communities, 84 percent have never participated in a trial. Twenty-two percent would enroll if a drug offered a cure and 21 percent if they could help find a cure.

Online or offline, safety also presented an issue to the survey participants:

  • 41 percent reported that trial safety is a primary concern
  • 36 percent cited the credibility of the trial information found online
  • 88 percent would prefer receiving clinical trial info online from a doctor

And when asked where they would first go to learn more about a trial:

  • 46 percent pointed to doctors
  • 24 percent said search engines
  • 70 percent were comfortable receiving clinical trial messages from a healthcare association rep—the example offered was the American Diabetes Association
  • 53 percent were comfortable hearing from an online support group
  • 36 percent cited a live online chat
  • 32 percent cited a website message board

For those invested heavily in the favorite social media sites:

  • Fewer than 20 percent were most comfortable receiving clinical trial messages by way of a Facebook wall or a Twitter profile. Meanwhile,
  • Only 30 percent were aware of key clinical trial websites, and
  • Only 18 percent were specifically alert to

In the end, using social media for patient recruitment is perhaps not so much an uphill battle as an exercise in strategy, discernment, and selection. It can work, it can even be an ideal method (as seen in the Mayo Clinic pilot study), but the particular conditions of the study must fit the social media opportunity, and not the other way around.

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  1. Posted February 14, 2012 at 4:31 am | Permalink

    thanks for sharing your six factors – I think the first three are about 80% of the battle: (Research focusing on a rare disease; Concentrated and organized patient population; Patient-initiated research and ownership for success). One of the most interesting demonstrations of the power of social media in patient recruitment occurred in the field of MS research these past 3 years, with the discovery of the CCSVI syndrome as it relates to MS progression – a situation that definitely passed the six factor test, with thousands of people traveling abroad even for treatment for the condition.

  2. Posted February 14, 2012 at 1:49 pm | Permalink

    I disagree with these comments. The Love/Avon Army of Women now has almost 370,000 women from around the country willing to consider participating in research. Seventy per cent have never had breast cancer and 30% are survivors. We have recruited for 58 studies and many are successfully closed within days to weeks. While the majority have not been treatment studies, many involve interventions such as core biopsies, particular diets or exercise programs, and involved questionnaires.
    There is obviously a strong role for patient/advocate initiated research for treatment but also a strong role in research into the cause and prevention of disease.

  3. Posted February 15, 2012 at 11:36 am | Permalink

    It’s worth noting that Quintiles (the world’s largest biopharmaceutical services company) has been using social media and its own patient communities for clinical trial recruitment for a number of years. We are leveraging all available social media channels and digital properties to connect with patients. We’ve developed a comprehensive digital strategy and have even formed a Digital Patient Unit to employ these tools in the recruitment of patients for clinical, observational and adherence studies.

    Quintiles’ is a free medication monitoring service with more than 2.5 million registered users. Our website (165,000 users) is an information resource to increase awareness, understanding and participation in clinical research including a global database of all current clinical trials.

    When people register on these sites, they’re given the opportunity to opt in to receive information about clinical trial participation and serving as a rich source of patient recruitment.

    A new paper from Elisa Cascade, Andrew Burgess, and Mark Nixon entitled, “Drivers of Patient Interest in Clinical Trial Referral” finds that condition, side effects, treatment satisfaction, previous clinical trial experience, and country of origin are all significantly related to patient interest in study referral. However, age, treatment satisfaction and condition are the best predictors of interest.

    See that article here:

  4. Posted February 16, 2012 at 11:53 pm | Permalink

    Hi, I’m the author of the article identifying the 6 key factors. Thank you for your comments. I want to emphasize that the article I wrote was entirely from the perspective of protocol-specific patient recruitment. And I think that some of the challenges associated with protocol-specific social media recruitment can be overcome with a greater focus on research site and disease specific social media presence. But that focus will require a change in perspective by the industry and more long-term engagement with patients.

    I believe that social media presents great opportunity for clinical trial education and awareness. However, to realize that opportunity, we will have to be willing to let go of previous practices that were created for other forms of media. Mayo knows this and has already adapted. They are experts in social media, which is why they where able to identify this opportunity and implement it to perfection.

    Susan, I’m very interested in learning more. I perused the website, and from what I gather, patients are recruited via an email blast to the database. Please correct me if I’ve misunderstood. I do not consider email marketing to be social media, though it is a form of digital marketing with plenty of value in patient recruitment. Are there more social components that I missed when browsing your website?

    Thanks for sharing your comments. I really enjoy hearing different perspectives on this issue, particularly since it’s a quickly evolving area.

  5. Posted February 24, 2012 at 6:26 pm | Permalink

    Wow … what is it they say? “Haters gonna hate”?

    The Mayo study is proof of the success of social media in generating patient-initiated research. Why is that so hard to believe?

    The compilation of anecdotal data off the WomenHeart online support community on Inspire is what convinced researchers to run a pilot study. The success of that pilot generated a virtual registry of patients from around the world (300 inquiries to date) and a DNA biobank. We continue to foster recruitment through social media such as the WomenHeart community; however, media coverage is also prompting inquiries into the research. (There is no “email blast to the database.”)

    It really isn’t that complicated. Give empowered patients and dedicated clinicians/researchers some credit.

    Katherine Leon

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