Clinical research requires collection of data from both the clinical and patient perspectives, but patient reported data are not collected routinely in clinical practice. We propose a network of researchers to develop a web-site that serves as both a repository of key patient-reported questionnaires (e.g., symptoms and quality of life) and a mechanism to administer them to patients. The network will focus on outpatient oncology, an area in which quality of life measures are already widely used for research.
The specific aims of the proposed network are to: 1) Determine what aspects of patient reported health would be most useful for evaluating the effectiveness and quality of outpatient oncology practice, 2) Explore desirable features for a web-based system to administer standardized questionnaires to patients, 3) Explore potential technical, cultural, ethical, and legal barriers to the use of such a system, and 4) Develop a prototype web-site for use by outpatient oncology providers to collect patient reported data in the clinical setting. Network participants represent disciplines including behavioral science, clinical oncology, clinical trials, clinical epidemiology, decision sciences, outcomes and effectiveness research, quality of life assessment, information technology, social work, patient advocacy, medical ethics, law, and electronic medical records. The perspectives of patients and practicing clinicians will be included. The project gains leverage from infrastructure provided by the International Society for Quality of Life Research. Activities of the network will include literature reviews, discussion of issues related to website design and use, development and review of a prototype website, with two face-to-face meetings of network members and outside experts. The main products will be a prototype web-site to collect standardized patient reported data, and recommendations for its use. These data will be linkable to other data including electronic medical records, clinical trial databases, and administrative data. The overall impact will be to enhance the comprehensiveness of data available for clinical research.
