The Newest Place to Connect On-Line: The Participant Pool!
It was with some surprise that I happened across this website. It’s called ResearchMatch and it’s described as a “National (US) Research Study Recruitment Registry”. The press release that led me to the ResearchMatch website was one announcing that Rockefeller University was now joining the registry.
Here’s the press release: Rockefeller joins first national research study recruitment registry
“The Rockefeller University Center for Clinical and Translational Science is proud to be a founding collaborating institution of ResearchMatch,” says Barry S. Coller, vice president for medical affairs and codirector of Rockefeller’s CCTS. “ResearchMatch is an important initiative in speeding both the discovery of new knowledge and the translation of that knowledge into improved health. It incorporates a number of confidentiality and privacy protections and has been approved by a human subjects ethics committee.”
ResearchMatch, at first glance, appears to be almost as appealing as any other social networking site. The taglines and catch phrases include (wildly out of context) inspirational quotations by Carl Sagan and Jane Goodall alongside pictures of very happy, very interesting, diverse persons who we assume are potential research participants. People who, according to Barbara Alving, director of the National Center for Research Resources (a part of the National Institutes of Health) are contributing “to advancing new treatments.”
Participant pools have been around in clinical research for quite a while. Usually situated in academic centres, and quite often in psychology departments, they often include only students who are enrolled in first year clinical courses, such as pscychology or medicine. They’re typically students who are also learning how to conduct research themselves, and taking part in research is a necessary aspect of this learning. This is, in essence, just another very large participant pool, isn’t it? Well, yes, it is. However, a few things worry me about this site.
First, it’s very slick. Nothing wrong with that, but it makes you want to join just to see who you’ll meet! (It is, after all, called ResearchMatch!) There are options on the site to “share with friends!” Visitors to the site are encouraged to “Join today! It only takes a few minutes!” and “Create your profile now! It’s free and and everyone can join!” I found the kinds of motivational statements that are flashed across the website to inspire participation most interesting. One famous quote from Jane Goodall (“Every individual matters. Everyone has a role to play. Every individual makes a difference”) seems to be referring to participation in studies through ResearchMatch. This quotation, in fact, does not refer to research at all, according to The Jane Goodall Institute of Canada. Rather it refers to our individual obligation to protect the environment, ensure animal welfare and try to better understand of relationships between humanity, the animal world and the natural environment. Now, there isn’t anything wrong with taking a good inspirational quote out of context if it applies to the situation. And there isn’t anything wrong with using slick and attractive lifestyle advertising to get people’s attention. However, I’d recommend against doing any of that in the context of recruitment. Most ethics boards strongly and appropriately discourage “slick” recruitment processes. Transparency and clear information are a key part of any recruitment process, including a process to recruit into a participant pool.
My biggest concern with this service comes out of the following statement on the website: “You may either register yourself or someone else as their parent, guardian or caretaker.” This statement is repeated on the profile creation page, accompanied by a picture of a young handsome dad in front of his laptop in the backyard with his toddler son in his lap, apparently signing the boy up for participation in research studies. With 52 institutions taking part in this initiative, and countless trials and studies coming out of those institutions, it’s unclear who is overseeing it and who would ensure that the best interests of those who are not signing up for themselves would be protected. The website refers to the activities of ResearchMatch as being overseen by “an” Institutional Review Board but the provided link simply takes you to the US Office of Human Research Protection. Are they overseeing it? Again, it’s unclear. Awfully worrying is the fact that while it’s emphasized that if you sign up, you always “have a choice” to participate or not in research studies, there are no clearly stated safeguards in place for those who are signed up by others.
It’s clear that human participants are needed in order to advance research. Of course. I’m just not sure that what appears to be pretty slick lifestyle advertising without clarity of information is the best way to do it.
Research Ethics Blog 
NIH released a press release about this, which gives more background.
From that Press Release:
“One key difference is that ResearchMatch places the burden of connecting the right volunteers with the right study on the researchers”
And then:
After an individual has self-registered to become a volunteer, ResearchMatch’s security features ensure that personal information is protected until volunteers authorize the release of their contact information to a specific study that may be of interest to them.”
Not entirely clear, at least to me, how the site gets from point a to point b if researchers don’t have access to volunteer’s info….
Peter
One would expect Ethics Boards to stamp on this sort of recruitment. I am a member of the Gene Therapy Advisory Committee in the UK, and we have often come down hard on this sort of flim-flam.
Therapeutic misconception is also in play here. They are obviously highlighting the benefits and not even mentioning the risks involved with clinical trials. Let’s face it though, study recruitment on the web is barely beginning.
http://www.theclinicaltrialsguru.com