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Making the e-connection: New means to recruit for research
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Have you ever asked, “Why, in 2013, are our main tools for recruiting for clinical studies fliers and ads in local newspapers?” Finding volunteers has often been quite challenging — are there other ways? There are, and this month, I’ll explore two instances and their potential impact.
In 2003, Katherine Leon, aged 38 years, had recently given birth to a healthy boy, her second child. Six weeks later, she experienced crushing chest pain. After a visit to her physician and two to the emergency department, an angiogram prompted emergent CABG. She was found to have spontaneous coronary artery dissection (SCAD).
“To go from a mom of two to being a patient was a really big shock. I didn’t smoke. I didn’t eat fatty foods. I exercised. Why in the world would my body just fail?” she said in an interview with The Wall Street Journal.
Edward C. Chao
The same year, she and another SCAD patient, Laura Haywood-Cory, started a discussion board (cleverly named “All the SCAD Ladies, Put Your Hands Up!”) on www.inspire.com, and attended a workshop run by Mayo Clinic cardiologist Sharonne Hayes, MD.
Leon and Haywood-Cory discussed Dr. Hayes leading a study, which, among other aims, is attempting to determine whether a gene mutation can increase the risk for SCAD. In turn, Dr. Hayes and her team asked Leon to use her network to recruit additional patients, forming a highly successful partnership.
Websites for patients, like inspire.com, help potential study participants find clinical trials. PatientsLikeMe (www.patientslikeme.com) has even partnered with ClinicalTrials.gov to facilitate subjects’ search for studies for which they may be interested and eligible.
This online outreach is also going the other direction, as potential study volunteers and investigators can communicate with each other, beyond the traditional recruitment flyer.
This graph shows the evolution of enrollment in Hayes’ research study after her collaboration with Haywood-Cory.
Source: Image courtesty of Brian Loew, Inspire.com.
ResearchMatch (www.researchmatch.org) is an online registry that seeks to bring together potential study volunteers with researchers who are recruiting these individuals; it was formed by a consortium of academic institutions across the nation, and sponsored by the NIH. Currently, only investigators from a Clinical and Translational Science Awards (CTSA) Consortium site can participate; expansion beyond CTSA institutions is anticipated.
A volunteer said, “ResearchMatch has given me the opportunity to easily be involved in research. I don’t have to go looking for studies. Most recently, I enrolled in an interesting study that required completing an online survey. By being involved in research, I feel part of the solution.”
As I write, there are now 43,334 volunteers, 351 studies and 1,775 researchers participating in ResearchMatch (from 84 institutions across the United States — including mine — through the UCSD Clinical and Translational Research Institute). The study does not have to be a clinical trial, but can be any type of IRB-approved study, such as a survey.
Interested researchers register at ResearchMatch; you must show evidence of having an IRB-approved study. The site’s institutional liaison reviews and approves the researcher’s request for access to ResearchMatch. You then formulate an initial, brief recruitment message that must be approved by your IRB. This message contains no information identifying you or any contact information. You can enter your criteria in ResearchMatch’s Search Builder, which will provide a list of potential matches (also without any identifying information).
The site will contact these individuals, and they have the option of replying “yes,” “no” or not responding. Should the prospective participant choose the positive response, ResearchMatch releases contact information — an email address. I have been a participating researcher on this site and have received several dozen matches, several of whom have gone on to enroll in my studies. I can attest that ResearchMatch is user-friendly, a decided plus for someone — namely, yours truly — who isn’t very computer-savvy.
Future applications of technology hold tremendous promise for continuing to transform research on human subjects in ways yet unknown. These applications can potentially significantly shift discoveries and, in turn, produce novel diagnostic tests, treatments and, ultimately, improve patient outcomes.
For more information:
- Edward C. Chao, DO, is assistant clinical professor of medicine at University of California, San Diego, and staff physician at VA Medical Center, San Diego.
- Winslow R. When patients band together. Wall Street Journal. Aug 30, 2011. Available at: http://online.wsj.com/article/SB10001424053111903352704576538754057145360.html. Accessed Sept. 28, 2013.
- Disclosure: The author has no relevant financial disclosures.