Patient Profiles and Attitudes in the UCSF/Stanford CRN

University Of California San Francisco, San Francisco CA

Investigators

Abstract

The UCSF/Stanford Collaborative Research Network (CRN) is comprised of over 400 primary care physicians in Northern and Central California. Since 1984, the CRN has successfully conducted and published studies developed by practice-based community physicians. With current funding from AHRQ, the CRN has made significant progress in assessing the feasibility of electronic collection and aggregation of practice-derived data to further enhance the research capabilities of the Network. The CRN's capability to conduct research on underserved and underrepresented minorities has been increased by the incorporation of the Community Health Network and Community Clinic Consortium (care providers to underserved populations within San Francisco). Other activities have focussed on incorporating research results into practice, and obtaining sustainable support for CRN infrastructure costs. This application requests funds for two purposes: 1) to administer the National Ambulatory Medical Care Survey (NAMCS) among a sample of physician and patient members of the CRN; and (2) to explore patient and physician attitudes towards the release of medical record information for research purposes. In the NAMCS study, a stratified random sample of 100 CRN physicians will complete the NAMCS physician survey, with 30 patients per physician participating in the patient NAMCS survey. Physicians will be able to gather the information either electronically using a hand-held device, or on paper. Our examination of patient and physician attitudes towards the release of medical record information for research purposes will begin with in-depth interviews of 42 patients in 7 practices to learn patient attitudes and perceptions regarding research participation generally, and release of medical record information specifically. These attitudes and concerns will be placed in the context of past experiences with research and release of medical record information for purposes other than research. The interview information then will be used to inform public debate on data privacy and confidentiality, as well as to inform our development and pilot testing of patient and physician surveys on this topic. The patient and physician surveys will be distributed for use and evaluation by other PBRNs.