The Design of a Data Management System for a Multicenter Palliative Care Cohort Study
Cohort Studies; Data Management; Medical Record Linkage; Multicenter Study; Palliative Care
Context. Prospective cohort studies of individuals with serious illness and their family members, such as children receiving palliative care and their parents, pose challenges regarding data management. Objective. To describe the design and lessons learned regarding the data management system for the Pediatric Palliative Care Research Network's SHAred Data and REsearch (SHARE) project, a multicenter prospective cohort study of children receiving pediatric palliative care (PPC) and their parents, and to describe important attributes of this system, with specific considerations for the design of future studies. Methods. The SHARE study consists of 643 PPC patients and up to two of their parents who enrolled from April 2017 to December 2020 at 7 children's hospitals across the United States. Data regarding demographics, patient symptoms, goals of care, and other characteristics were collected directly from parents or patients at 6 timepoints over a 24-month follow-up period and stored electronically in a centralized location. Using medical record numbers, primary collected data was linked to administrative hospitalization data containing diagnostic and procedure codes and other data elements. Important attributes of the data infrastructure include linkage of primary and administrative data; centralized availability of multilingual questionnaires; electronic data collection and storage system; time-stamping of instrument completion; and a separate but connected study administrative database used to track enrollment. Conclusions. Investigators planning future multicenter prospective cohort studies can consider attributes of the data infrastructure we describe when designing their data management system.
Nye RT; Hill DL; Carroll KW; Boyden JY; Katcoff H; Griffis H; Campos D; Hall M; Wolfe J; Feudtner C
Journal of Pain and Symptom Management
2022
<a href="http://doi.org/10.1016/j.jpainsymman.2022.03.006" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.03.006</a>
Strengthening primary care with better transfer of information
Humans; Patient-Centered Care; Communication; Physicians; Continuity of Patient Care; Primary Health Care/organization & administration; Medical Records Systems; Access to Information; Medical Record Linkage; Computerized
2008
Reid RJ; Wagner EH
Canadian Medical Association Journal
2008
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1503/cmaj.081483" target="_blank" rel="noreferrer">10.1503/cmaj.081483</a>
Information exchange among physicians caring for the same patient in the community
Female; Humans; Male; Follow-Up Studies; Prospective Studies; Middle Aged; Cooperative Behavior; Communication; Physicians; Ontario; Continuity of Patient Care; Hospitals; Community; University; Access to Information; Medical Record Linkage; Office Visits
BACKGROUND: The exchange of information is an integral component of continuity of health care and may limit or prevent costly duplication of tests and treatments. This study determined the probability that patient information from previous visits with other physicians was available for a current physician visit. METHODS: We conducted a multicentre prospective cohort study including patients discharged from the medical or surgical services of 11 community and academic hospitals in Ontario. Patients included in the study saw at least 2 different physicians during the 6 months after discharge. The primary outcome was whether information from a previous visit with another physician was available at the current visit. We determined the availability of previous information using surveys of or interviews with the physicians seen during current visits. RESULTS: A total of 3250 patients, with a total of 39 469 previous-current visit combinations, met the inclusion criteria. Overall, information about the previous visit was available 22.0% of the time. Information was more likely to be available if the current doctor was a family physician (odds ratio [OR] 1.75, 95% confidence interval [CI] 1.54-1.98) or a physician who had treated the patient before the hospital admission (OR 1.33, 95% CI 1.21-1.46). Conversely, information was less likely to be available if the previous doctor was a family physician (OR 0.38, 95% CI 0.32-0.44) or a physician who had treated the patient before the admission (OR 0.72, 95% CI 0.60-0.86). The strongest predictor of information exchange was the current physician having previously received information about the patient from the previous physician (OR 7.72, 95% CI 6.92-8.63). INTERPRETATION: Health care information is often not shared among multiple physicians treating the same patient. This situation would be improved if information from family physicians and patients' regular physicians was more systematically available to other physicians.
2008
van Walraven C; Taljaard M; Bell CM; Etchells E; Zarnke KB; Stiell IG; Forster AJ
Canadian Medical Association Journal
2008
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1503/cmaj.080430" target="_blank" rel="noreferrer">10.1503/cmaj.080430</a>