We describe the architecture of the Patient Centered Outcomes Research Institute (PCORI) funded Scalable Collaborative Infrastructure for a Learning Healthcare System (SCILHS, http://www.SCILHS.org) clinical data research network, which leverages the $48 billion dollar federal investment in health information technology (IT) to enable a queryable semantic data model across 10 health systems covering more than 8 million patients, plugging universally into the point of care, generating evidence and discovery, and thereby enabling clinician and patient participation in research during the patient encounter. Central to the success of SCILHS is development of innovative ‘apps’ to improve PCOR research methods and capacitate point of care functions such as consent, enrollment, randomization, and outreach for patient-reported outcomes. SCILHS adapts and extends an existing national research network formed on an advanced IT infrastructure built with open source, free, modular components.
STUDIES made in the past nine years by William Firth Wells and Mildred Weeks Wells 14 in Philadelphia and its suburbs on the effect of ultraviolet irradiation of classrooms on the spread of measles, chickenpox, and mumps in school children, have suggested that such irradiation has reduced the spread of these diseases, particularly measles, in the classrooms studied. In an attempt to repeat their observations, similar experiments have been undertaken by the New York State Department of Health t in three rural centralized schools in upstate New York. Actual observations in these experiments did not begin until January, 1945, but the extensive measles epidemic which occurred in New York State in the winter of 1945-1946 makes this early preliminary epidemiological report possible. The decision to conduct the study in centralized rural schools was determined primarily by their having certain characteristics which constitute highly de-*Presented before the Epidemiology Section of the American Public Health Association at the Seventyfourth Annual Meeting in Cleveland, Ohio, November 14, 1946. t This study has been made by a team of the department, with the various aspects represented as follows: epidemioloaical, Drs. Perkins and Bahlke; statistical, Hilda F. Silverman; engineering, C. R. Cox; and bacteriological, F. W. Gilcreas, assisted by Hazel V. Roberts.
Women with breast cancer in rural areas are likely to exhaust their usual sources of psychosocial support while still facing challenges posed by breast cancer, but are unlikely to have access to professionally led support groups. In this community-based project, we assessed the feasibility and acceptability of providing support groups to women with breast cancer in a large rural area using videoconferencing and a workbook journal, and we assessed the intervention's potential to reduce distress and increase emotional expression and self-efficacy for coping with cancer. Twenty-seven women in the Intermountain Region of northeastern California participated in eight-session support groups led by an oncology social worker by going to nearby videoconferencing sites. Feasibility and acceptability were demonstrated. Older as well as younger women were comfortable using videoconferencing and said the groups were valuable because they promoted information sharing and emotional bonds with other women with breast cancer. They emphasized the importance of a professional facilitator and identified advantages of using videoconferencing for support groups. Pretest and posttest comparisons showed significant decreases in depression and posttraumatic stress disorder symptoms. The results suggest that the intervention has the potential to provide a valuable service that is not readily available in rural communities.
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