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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
information, (3) provision of knowledge and decision support to enhance the quality of patient care, and (4) support for efficient health care delivery (IOM, 2003). Given these advantages, NCI is requiring organizations participating in its Community Cancer Centers Program to be able to build information technology capability, including electronic patient records (Niederhuber, 2006). Indeed, although still a minority, hospitals and ambulatory practices are increasingly investing in EHRs; however, these investments typically are being made by larger facilities, creating what is referred to as the “adoption gap” between large and small organizations (Brailer and Terasawa, 2003).
Whereas EHRs function to serve the information needs of health care professionals, personal health records (PHRs) generally focus on the collection of information to help individual patients better manage their health care. Early forms of PHRs differed in size, format, and content and were paper-based, relying on manual collection of information from patients and clinicians. Patients’ or caregivers’ actual use of these PHRs varied depending on their intended use and perceived value. Although patient-reported levels of satisfaction with PHRs were consistently high (83–93 percent) in several studies involving patients with cancer and diabetes and women with children (Drury et al., 1996; Davis and Bridgford, 2001; Lecouturier et al., 2002; Hampshire et al., 2004), rates of actual use ranged from 37 to 97 percent (Drury et al., 1996, 2000; Davis and Bridgford, 2001; Williams et al., 2001; Lecouturier et al., 2002; Hampshire et al., 2004; Walton et al., 2006). Providers’ level of satisfaction with using information from PHRs also varied (Drury et al., 2000; Davis and Bridgford, 2001; Williams et al., 2001; Lecouturier et al., 2002, Hampshire et al., 2004), and the few studies examining improvements in clinical status as a result of the use of PHRs found no significant differences (Drury et al., 2000; Williams et al., 2001).
Electronic versions of PHRs are becoming increasingly available as a feature offered by national health plans. These PHRs generally contain medical and pharmacy claims information and medical information libraries, and have areas for patients to record laboratory results and various health status findings (e.g., blood pressure, weight, height for children) and to collect health risk appraisal information. The committee could find no studies of the effectiveness of electronic PHRs. Research is needed to learn more about their potential value in linking cancer patients to psychosocial health services; informing their medical care; and perhaps most important, supporting them in managing their illness.
Consistent with the wide variation in the care coordination mechanisms reviewed above, the AHRQ review of care coordination concluded that the effectiveness of care coordination mechanisms will most likely depend upon appropriately matching the type(s) of care coordination mechanism(s) used with the needs of patients, although “more conceptual, empirical, and