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

DESIGN AND DEVELOPMENT
Based on the focus groups, we decided to develop a website that would both offer opportunity to participate and would educate on subject rights and responsibilities. We also wanted to give visitors a brief overview of the various types research being conducted on campus. We planned tol design a simple bookmark (somehow visually tied to the website) to place in departmental offices and to disseminate at orientation events such as Purdue's Boiler Goldrush. This bookmark would offer brief information on subject rights and essentially market the website.

We decided that the video should communicate a story or a context that would essentially 'give students the experience' and thus begin to raise the questions in their minds - and so we looked for a candidate study on which to base the video, the scenes, the story, and the dialog. We found a peanut and energy balance study through the department of Foods and Nutrition (Dr. Richard Mattes and his graduate student Carole Traoret). After developing a story line based on the study with objectives for each scene:

  • recruitment,
  • informed consent,
  • participation, and
  • debriefing,

we submitted our request for quote to Purdue's film studio. We were extremely fortunate to be assigned a recent film school graduate Jason Doty to be our Director/Producer/Photographer. At that point we conducted yet another focus group - with participants in the peanut study this time - to give Jason access to authentic human subject thoughts and experiences. From that focus group and our story outline with the educational objectives, Jason developed a really dynamic and entertaining script! We decided this was necessary, because participants will not be required to view the educational video. They will simply be presented with the opportunity and they will have to choose to view it.

Filming actually took place in July of 2003. We used a combination of student actors from Purdue's Theater Department and the real researchers. The filming took 3 days and had indoor and outdoor locations all over campus. Jason was assisted by a one-man crew from Purdue's film studio, Steve Sloan, the lead actors Alex Floyd and Jillian Shaw, and myself. We conferred frequently during the filming - Jason developed the script, storyboard, and detailed film schedule, planned and executed the actual filming, and ensured the entertaining and creative aspects of the video while I consulted with him and Alex and Jillian on ways and opportunities to enhance the piece's educational objectives throughout. It was grueling but immensely fun. After the subject matter experts viewed the first cut, we made a few changes, and did a bit of refilming - but this was kept to a minimum because of the thorough problem definition process we had undergone.

To work with the film, media, content, and web experts on our team, I mocked up a prototypical website (on my Purdue Career Account - with bogus materials) and bookmark that suggest how we might stage and promote the video and our other educational materials.A designer/public relations person and a programmer from Purdue's Office of Research Communications put up the final and official versions of the website and bookmark. The site underwent formative evaluation with the various focus group members and will eventually by accessed under under the domain name researchandme.purdue.edu. We plan to place links on high traffic student sites such as Purdue's SSINFO. To enhance accessibility for users with slow bandwidth and/or users with visual and hearing disabilities, ORA has placed an alternative text version of the instruction on the website with a few video stills incorporated. I have found that actual scripts and transcriptions, with video stills incorporated, are frequently placed on the web. In fact people used to viewing film media even appreciate having a few camera instructions in the script to aid them in visualizing the scenes in their minds.

For our objective to put a positive spin on human subject research at Purdue, I contacted Purdue's News Service and went through their archives to find professional photographs and links to articles on current human subject research to feature on the website.

Looking back on this experience I feel that one very important thing is missing - and that is offering students links to some of the background and history of human subject research. Why do we have the Belmont Report and Institutional Review Boards today? I can understand not wanting to focus only on abuses, but we do need to give at least some thoughtful consideration to the Belmont Report and events leading up to it. Having provided a site that will educate prospective participants about their rights, offer them opportunities to participate, and give them a view of all the varied and exciting human subject research going on at Purdue, also including a page on the history of how Belmont came to be will only provide our visitors with a more complete view of the topic. They will walk away with increased awareness, and this also is one of our objectives.

In case you arrived here through the back door ...