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Creating a Synthetic Interview for Patients Considering Cancer Clinical Trials
Valerie Monaco, PhD, MHCI1,2, (monacov@upmc.edu); Beth Simon, BSN, MSN1, Suzanne Pozzani1, Kenneth S. McCarty, MD, PhD1, Samuel Jacobs, MD1; 1University of Pittsburgh Cancer Institute, Pittsburgh, PA 2 Center for Biomedical Informatics, University of Pittsburgh, Pittsburgh, PA
Context: It is estimated that only 2-3% of all adult oncology patients participate in clinical trials. Two contributing factors to this low accrual rate are cancer patients' lack of awareness of trials and their fears and misconceptions about clinical trials. The provision of clinical trial educational materials has not always resulted in the expected outcomes (i.e., increased knowledge, changes in attitudes, willingness to participate). However, previous attempts at providing clinical trial information to patients have typically limited the amount of information presented, the number of times the information could be accessed, or the medium used for presenting the information.
Technology: The University of Pittsburgh Cancer Institute has partnered with MedRespond (Pittsburgh, PA, USA) to address the limitations inherent in past clinical trial information delivery approaches. MedRespond creates "synthetic interviews" (SI) to disseminate health-related information over the Internet. The SI utilizes Windows Server 2003 backed with a SQL Database that resides on top of the .NET Framework. In addition, the system presents video clips via a Streaming Media Server.
Design: The SI uses a patented video response search feature developed at Carnegie Mellon University. In response to users' conversation-like questions, the SI sorts through hundreds of pre-digitized video responses and plays the video clip that answers the question. Users thereby "talk" with the video image of an expert, asking questions in their own words, and getting answers in the form of video clips. As the expert talks, a printable transcript of the answer is displayed. The interface also contains links to specific questions, interview experts, and additional information.
Results: Two focus groups evaluated the clinical trials SI. Findings that emerged from the focus groups were (1) failure to appropriately match answers to questions resulted in dissatisfaction; (2) overstating information in the interview also resulted in a negative response; and (3) focus group members who were unfamiliar with clinical trials thought this approach to clinical trial education would be beneficial.
Conclusions: Creating a SI requires thoughtful consideration of (a) the capabilities and limitations of current technology; and (b) the end users’ informational needs. Changes to the SI interface and content have been made in response to the focus group findings. Our next step will be to evaluate the impact07/18/2006sed early stage breast cancer patients who are eligible for a clinical trial.