We propose Cancer Trials CareLink, an Internet-based system to gather research-quality, self-reported quality of life, supportive care, and satisfaction outcomes directly from patients in their homes. Patient self-reported data are of paramount importance for comparing treatments in clinical trials and in daily cancer care. Internet-based data collection offers significant advantages for improving the quality, timeliness, and cost of data capture, compared with alternative methods. Cancer Trials CareLink will link patients directly to their cancer trials site through a dedicated, secure Internet channel enabling two-way, multi-media communication between patients and their providers. Patients will have broad access to needed content and functionality to help them in their daily cancer care. Using a patient-centric, care contextual portal environment for data gathering, patients will be motivated, empowered, and supported so they may more easily and willingly provide research-quality self-reports for clinical trials. Benefits will include improved satisfaction with trials participation, easier self reporting, improved compliance with trial protocols, and lower data collection costs. Our Phase I research will demonstrate feasibility by having a working prototype that patients can and will use to provide self-reported data from their homes to their clinicians/researchers at a local trial site.
Cancer Trials CareLink is needed by and will be of value to cancer trial sites including hospitals university research centers and cancer centers. These institutions are investing in more efficient means to collect and manage data and to maintain communication with their patient populations. Pharmaceutical companies and contract research organizations can use Cancer Trials CareLink to enhance clinical and outcomes data collection from patients in trials and to monitor drug safety during trials and over time.
Goldsmith, Denise; McDermott, David; Safran, Charles (2004) Improving cancer related symptom management with collaborative healthware. Medinfo 11:217-21 |