Oh that Facebook…Can social media be used for clinical trial recruitment?
Social Media is all a buzz right now and everyone from industry giants, mom and pop shops, non-profit community organizations, and even the U.S government are trying to figure out how to use it to their advantage. Some organizations find social media platforms wildly successful, while others can't quite hit their mark. Just days before Facebook opened on NASDAQ, General Motors Co. decided to stop their advertising on Facebook. Were their ads ineffective, or was GM not correctly seeing the potential power of the social network to build brand loyalty? Should we care?
For many organizations that are looking for quick short-term returns on their investment dollars in the pay-per-click advertising might be disappointed with the results. As the article points out, the value of the social media user is that they become an advocate of the brand. Many are wondering if this is a sign of things to come for the advertising in the Facebook social media world; since it remains to be seen whether this virtual user engagement correlates with a return on investment (ROI). Is it possible to accurately define or measure ROI in social media?
One of the great powers of social media is creating a community and buzz through social connectedness—a virtual word of mouth system. Your social reach is indicative of a classic Wayne's World 2 scene, "You know how these things start… one guy tells another guy something, then he tells two friends, and they tell two friends, and they tell their friends, and so on". If you witness a friend "like" a page or event, they are giving their social network a thumbs-up that they interested in a particular company, product, event, etc.—hey, and you might too. Conceivably your "friends" are more likely to share similar interests…or least be curious enough to check it out.
But how can this be applied to academic and clinical research realm—and should it? By creating a community around a specific disease or research area, you can create a group who has common interests and build loyalty within that group—that is if you can foster trust among your group members as a credible, reliable and useful resource. For instance, if you are a group member or follower of a specific group related to diabetes treatments and you see a fellow member of that group "likes" a diabetes clinical trial, then you might be more inclined to also check out that clinical trial.
The use of social media in clinical trial recruitment is a tricky area that still is trying to find guidance. In recent blog post by Rebar Interactive, brings this issue to light and raises A Social Media Question IRBs Must Ask about how to appropriately use the power of social media to raise awareness of clinical trial opportunities; all the while, being mindful of patient privacy. This can be counterproductive in a virtual environment and age where absolute privacy may be disintegrating, with each allow access button we click.
In his latest commentary, Andrew "Andy" Grove, former Chief Executive Officer of Intel Corporation and patient advocate at the University of California, San Francisco, envisions an eTrial system similar to Amazon.com.
….Amazon.com is a good example. A large database of customers and products form the kernel of its operation. A customer's characteristics (like buying history and preferences) are observed and stored. Customers can be grouped and the buying behavior of any individual or group can be compared with corresponding behavior of others. Amazon can also track how a group or an individual responds to an outside action (such as advertising).
We might conceptualize an "e-trial" system along similar lines. Drug safety would continue to be ensured by the U.S. Food and Drug Administration. While safety-focused Phase I trials would continue under their jurisdiction, establishing efficacy would no longer be under their purview. Once safety is proven, patients could access the medicine in question through qualified physicians. Patients' responses to a drug would be stored in a database, along with their medical histories. Patient identity would be protected by biometric identifiers, and the database would be open to qualified medical researchers as a "commons." The response of any patient or group of patients to a drug or treatment would be tracked and compared to those of others in the database who were treated in a different manner or not at all. These comparisons would provide insights into the factors that determine real-life efficacy: how individuals or subgroups respond to the drug. This would liberate drugs from the tyranny of the averages that characterize trial information today. The technology would facilitate such comparisons at incredible speeds and could quickly highlight negative results. As the patient population in the database grows and time passes, analysis of the data would also provide the information needed to conduct postmarketing studies and comparative effectiveness research.
Today's e-commerce systems started small and took nearly 20 years to develop. Adapting this kind of capability to medical information would be a monumental undertaking. Initiating and overseeing it would be an appropriate task for the professional societies. There are encouraging signs, including a call in 2004 by the American Medical Association for public registries of drugs, as well as a proposal for trials that incorporate feed-forward mechanisms. (…) Another proposal would allow patients to choose between medicines whose efficacy has been determined in different manners. There is also a suggestion to use control of pricing to encourage drug developers to move forward in a "progressive" trial design.
Recently, a researcher told me that he'd be interested in learning more about using social media and networking sites to recruit participants for research studies. Here is an example that the Mayo Clinic shared this week.
Through patient-run websites dedicated to heart conditions and women's heart health, a team of cardiologists is reaching out to survivors of spontaneous coronary artery dissection, also known as SCAD, a poorly understood heart condition that affects just a few thousand Americans every year.
The study landed 18 participants in less than a week, six more than could participate in this pilot of 12 patients. The remaining volunteers are eligible to participate in a new, larger study based on the initial study's success.
How Can We Make Biomedical Studies More Inclusive?
… provide multisensory, flexible options for recruitment, research instruments (such as questionnaires), measurements, and responses from participants, with reasonable accommodations that invite and facilitate participation by persons with disabilities; and when you do not know how to include someone with a disability, consult someone who does (the potential research participant, another person with that disability who is knowledgeable about the range of methods people use for living fully with it, or a professional who works with persons who have that disability).
… (i) plan multiple options for people to learn about, respond to, and arrive at opportunities to participate in research; (ii) provide multiple means to communicate the information in research instruments and instructions for participants; and (iii) provide multiple means of responding to research instruments and self-management interventions.
I wonder what our PRS team thinks about these ideas. And, do we know of other successful approaches, web-based technologies or great examples we could share? Ann Williams and Shirley Moore are looking for ideas to develop comprehensive guidelines.