December 3, 2010
Posted by Elizabeth Han
Research studies matter. Participants matter.
“Personally, you’re fortunate if you can reach 50 percent of your enrollment targets in a study involving children,” Alexander said. “Recently Spectrum looked at Stanford, and 50 percent enrollment was a successful study.” –(Stanford Daily)
That quote is painfully true. A recent conversation at the hospital got me thinking that it would be so nice to have a social network for research participant recruitment here in Canada.
You’ve probably seen ResearchMatch.org in the US, which is a beautiful initiative by the NIH that matches IRB-approved studies with volunteers based on information they provide in a profile. There should really be a site like this in all countries of the world, with every university/research institution participating. But there isn’t. And it’s so frustrating!
Recruitment is no trivial task.
As a researcher at Canada’s largest children’s rehabilitation hospital, Holland Bloorview, I have to say that recruitment of participants is probably the hardest part of what I do. We write proposals, plan intricate methodologies, and drum up massive hype, but at the end of the day, evidence is what drives this work. Evidence connects assistive technologies to kids who need them. And that’s not possible without research participants.
Getting them isn’t easy. Especially if your study is looking for young kids or patient groups that may have difficulty seeking you out and saying, “Hey! I want to be in this study!” Especially if your institution’s process stays vastly internal. These methods are common and fraught with frustration:
- Email staff distribution lists (e.g., physicians, PTs and OTs, scientists): difficult if you can’t get approved to use multiple lists.
- Post on hospital intranet: very few people seem to read these bulletins
- Post physical posters around campus/hospital: very easy to overlook.
- Visit schools, summer camps, after-school programs, swimming lessons, etc: time-consuming to set up, require travel, intrusive.
- Recruit from previous participants in other studies: what are the odds you’ll be able to find one?
It’s a minefield of difficulties. And let’s not forget that everything you use has to get by your local IRB (or REB, here in Canada). Creative recruitment methods /= ethical recruitment methods!
In the end, despite everything you try, successful recruitment probably comes down to word-of-mouth.
It’s a question of: Who do you know? More importantly, who do they know? Relationships create accountability…which in this case may mean a call-back
If it sounds like I’m quoting Jesse Eisenberg in The Social Network, I guess that’s the point.
At its heart, the problem of participant recruitment is a social networking problem.
But you need a very special network. If you built it, they will come.
What am I not talking about?
- Extant networks like Facebook and Craigslist: This wasn’t what these networks was built for. Some researchers have taken out ads on Facebook, but it just seems sketchy to me. Craigslist Volunteers is spam-infested and just not the right place for something that may involve sensitive health information.
- CureTogether and PatientsLikeMe: These are terrific communities, but their research participation focuses on mining data from the user base for their own studies, not connecting those users to outside studies.
- Institution-specific “communities”: First of all, community is a generous word. A simple HTML page or bulletin board doesn’t cut it. Especially if its buried under a mountain of other links. I recently was appalled to find that my department had merely one study (expired, of course) on its so-called listing.
That said, ResearchMatch is a great standard.
Seeing ResearchMatch makes me happy because it is special. It is secure, IRB-approved, and ambitious in scope. The FAQ says that it is not just for clinical trials. Currently, over 500 researchers and 11 000 volunteers have signed up. There are 220 active studies and 54 research institutions.
I would love to see more researchers and volunteers. I would also love to see more social networking features (but perhaps these are limited by the fact that profiles must remain anonymous). I would love to see this in other countries.
We have to make it as simple and easy as possible to participate. I am absolutely convinced that people want to participate, but they often don’t know how.
I actually had a parent of a young participant come up to me and ask me point-blank to make this social website happen in Toronto.
And how about this quote that I saw on a blog:
“I am going to have my entire family sign up to be part of ResearchMatch. Imagine if everyone did the same.”