Objective The study of posttraumatic growth (PTG) has burgeoned over the last decade, particularly in the area of oncology. The aims of the study were to: (1) describe PTG in patients with hepatobiliary carcinoma, (2) examine agreement between the patient and caregiver measures of patient PTG, and (3) test the associations between PTG and other better established psychological factors and clinically relevant outcomes. Methods Two hundred and two patients with hepatobiliary carcinoma completed a battery of standardized questionnaires that measured posttraumatic growth, depressive symptoms, optimism, expressed emotion, and quality of life. A subsample of family caregivers also completed ratings of patient PTG, using the Posttraumatic Growth Inventory (PTGI, as well as their own PTG. Results No significant increase in PTG was observed between diagnosis and 6-months follow-up with the exception of the Relating to Others subscale of the PTGI. PTG was not found to be associated with quality of life or depressive symptoms. At diagnosis, the agreement between the patients' PTG and family caregivers' rating of PTG was found to be high (ICC= 0.34-0.74, p=0.001-0.05). Posttraumatic growth was found to be significantly associated with optimism [r=0.20 p=0.02-.0.05] and traumatic life events reported in the past three years including recent losses [F(1,52)=6.0, p=0.02] and severe physical injury [F(1,52)=5.5, p=0.02]. Caregivers reported PTG as a result of their loved one's diagnosis of cancer. Conclusion Preliminary results suggest that PTG is relatively stable over the first 6-months after diagnosis and results in changes as a result of a diagnosis of cancer were reported, and possibly observed, by others. Family caregivers also experience PTG as a result of their loved one's diagnosis of advanced cancer.
In 2001, community health center (CHC) leaders in Oregon established an organization to facilitate the integration of health information technology, including a shared electronic health record (EHR), into safety net clinics. The Oregon Community Health Information Network (shortened to OCHIN as other states joined) became a CHC information technology hub, supporting a network-wide EHR with one master patient index, now linked across >40 safety net organizations serving >900,000 patients with nearly 8,000,000 distinct CHC visits. Recognizing the potential of OCHIN’s multi-clinic network and comprehensive EHR database for conducting safety net-based research, OCHIN leaders and local researchers formed the Safety Net West practice-based research network (PBRN). The Safety Net West “community-based laboratory,” based at OCHIN, is positioned to become an important resource for many studies including: evaluation of the real-time impact of health care reform on uninsured populations; development of new models of primary care delivery; dissemination and translation of interventions from other EHR-based systems (e.g., Kaiser Permanente) into the community health setting; and analyses of factors influencing disparities in health and health care access. We describe the founding of Safety Net West, its infrastructure development, current projects, and the future goals of this community-based PBRN with a common EHR.
Introduction We recently completed a strategic planning process to better understand the development of our five-year-old PBRN and to identify gaps between our original vision and current progress. While many of our experiences are not new to the PBRN community, our reflections may be valuable for those developing or re-shaping PBRNs in a changing health care environment. Lessons Learned We learned about the importance of: (1) Shared vision and commitment to a unique patient population; (2) Strong leadership, mentorship, and collaboration; (3) Creative approaches to engaging busy clinicians and bridging the worlds of academia and community practice; (4) Harnessing data from electronic health records and navigating processes related to data protection, sharing, and ownership. Challenges Ahead We must emphasize research that is timely, relevant, and integrated into practice. One model supporting this goal involves a broader partnership than was initially envisioned for our PBRN, one which includes clinicians, researchers, information architects and quality improvement experts partnering to develop an Innovation Center. This Center could facilitate development of relevant research questions while also addressing ‘quick-turnaround’ needs. Conclusions Gaps remain between our PBRN’s initial vision and current reality. Closing these gaps may require future creativity in partnership building and nontraditional funding sources.
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