EDUCATIONAL WEBSITE, VIDEO, AND BOOKMARK FOR PURDUE'S HUMAN SUBJECTS

ANALYIS
Human subject research has had a checkered history that has lead to the development of several codes of ethics and federal regulation. Even today there is risk involved in participating in human subject research. As part of the NIH grant mentioned in the IRB Newsletter section above, I helped develop some web, print, and video-based educational materials for students, staff, and community members who may volunteer as research subjects for Purdue studies.

We wanted to identify our target audience - so essentially, I helped set up a temporary form-mail website to recruit people for focus groups. We then crafted an email and sent it out through Purdue's Direct Student Email service to 35,000 students, inviting them to respond either through the email or the website if they had ever been a human research subject. We also put up posters around campus and advertised in Purdue's student newspaper, The Exponent. We got around 400 responses, most of them through the web form. Unfortunately I wasn't given access to a database to dump the form-mail responses into, so I did the next best thing - I dumped all the messages over on the unix server, and wrote a shell script to 'cat' them all together and 'sed' out the mail and routing info using regular expressions. Without all that extraneous content and with a little formatting, the data was much easier to look over and analyze - some 30 pages of it, two emails to a page. I put up a FAQ on the website as well to answer students' questions. We ended up recruiting people from this group to participate in face to face focus groups - so that we could get a better idea of who our target audience was, what the content of the educational materials should be, and how to best deliver it.

What we learned from the two focus groups was that people wanted guidance on what questions to ask to minimize unwanted or unwelcome surprises during participation. We were also concerned that students were perhaps too trusting (other research institutions have been in the news recently because of conflict-of-interest cases). As for timing and method of delivery of this information, focus group participants thought educational brochures in the departmental offices would be very convenient. But optimally, participants wanted a website that would offer both the instructional materials AND information on available research studies to participate in. Currently no such website existed on campus, although individual departments and researchers are starting to recruit on the web. By facilitating human subject recruitment, Purdue's Office of Research Administration could provide training and information on subject rights closer to the time this knowlede is needed and assure that this training will be seen as students browse for participation opportunities. The focus groups also thought that video-based instruction would be more helpful in communicating the actual experience than just reading words on a consent form.

From the focus group and from talking to researchers on campus, we developed two over-arching educational goals:

• To empower students to be informed consumers of research studies through the educational video and other website materials.
  
  
• To put a positive spin on research studies by showing the value of what human subject volunteers contribute and by showing the "depth and breadth" of research that goes on at the University.