Technology is allowing people to connect and cultivate relationships in very exciting ways. Billions of people are using social networks to stay in touch with their friends, family and colleagues. But what type of relationship will social media & clinical research have?
Mainstream social media websites and clinical Research Professionals have started to get acquainted with each other. Some Research Professionals have climbed on board and created pages to promote their sites and currently enrolling studies. Research Volunteers are able to follow the sites updates, engage via instant message and email etc. This constant “real-time” type of communication should be extremely helpful with study recruitment & following up with study volunteers (recruitment & retention). But so far, it really isn’t.
One of the major challenges could be that many Research Volunteers don’t want to co-mingle their personal lives with their clinical research participation. With these social networks creeping into nearly every part of our lives, along with changing privacy policies, people are hesitant to engage researchers. No one wants to broadcast the fact that they joined a research volunteer “Group” and want to receive updates for a specific (and possibly stigmatizing) medical condition. Especially not to their friends, family and colleagues.
Another challenge faced by Research Professionals is that although the FDA has provided some guidance regarding the use of social media, specific guidelines on it’s use in clinical research have been limited.
“Static” websites designed to promote research opportunities have been around for over a decade. Many websites allow Research Volunteers to submit a questionnaire with their contact information, which is then forwarded to Research Professionals by the website’s administrator (usually charging a fee). But after the message is sent, the site may or may not follow up with the referral. Research Volunteers may change phone numbers, move or change email addresses. Many different scenarios may lead to the dreaded “Lost To Follow Up” status. Further, in the event that a Research Volunteer doesn’t qualify for a particular study, research site’s may not have dedicated staff who have the time to keep complete and accurate volunteer waiting lists.
TrialSphere.com aims to remedy these specific recruitment & retention challenges which can stand in the way of medical innovation and progress. Exciting new treatments can be lost because of the cost associated with clinical trial recruitment & retention. Research Volunteers may register on Trialsphere using only a valid email address which is not visible to other users. Any personally identifiable information must be intentionally provided by users to Research Professionals. TrialSphere is designed as a platform to discuss general research-related topics, ask questions, learn, connect and keep in touch. Logging into Trialsphere each day offers Research Professionals the ability to establish and cultivate relationships with Research Volunteers. Through familiar tools such as instant messaging, email, forums, comments, likes, follows & groups, researchers can now engage in a way which hasn’t yet been available to them. Research Professionals can also maintain their own TrialSphere blog and discuss topics which are important to them. Research Volunteers will always have free access to TrialSphere. If you are a Research Professional, try it out for free. We won’t charge you a dime until you’ve connected with 5 Research Volunteers.
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