Medical Student Involvement in a Human Rights Program: Impact on Student Development and Career Vision.

Background: There is consensus among many medical school deans that exposure to human rights is a necessary component of physician training [78], however little is known about the impact of engagement in human rights programs on students' personal and professional development [1516171819202122232425262728]. Objective: This study aimed to examine medical students' experiences in the Mount Sinai Human Rights Program (MSHRP), their motivations for involvement, and the possible influence of engagement on their professional identities, personal growth, and career choices. Methods: Through semi-structured interviews, this qualitative study gathered the experiences of 15 fourth year and recently graduated medical students who participated in the comprehensive training, research, and direct service opportunities provided by the program. Responses were coded using a content analysis approach. Findings: The results of this research highlight the motivations behind students' involvement in a medical human rights program, as well as the challenges they experienced engaging with this work. The study captured students' perceptions of the role of the program on their personal growth, clinical skills, and career vision. Nearly all the students interviewed indicated they developed important, clinically applicable skills that enhanced their traditional medical education. Students indicated that their participation directly influenced their professional identities and future career directions by reinforcing previous interests in human rights and social justice work, impacting medical specialty and residency program selections and fostering commitment to working with immigrant populations. Conclusions: The results of this study indicate that longitudinal involvement with the MSHRP contributed to the acquisition of important clinical skills that were not otherwise attained in students' early medical education. Findings suggest that there is significant opportunity for clinical and leadership development outside the traditional preclinical and clinical setting, and that exposure to human rights education shapes students' professional identities and career paths. Finally, the findings highlight the essential role of human rights and social justice in medical education.

Publication of data collection forms from NHLBI funded sickle cell disease implementation consortium (SCDIC) registry.

BACKGROUND: Sickle cell disease (SCD) is an autosomal recessive blood disorder affecting approximately 100,000 Americans and 3.1 million people globally. The scarcity of relevant knowledge and experience with rare diseases creates a unique need for cooperation and infrastructure to overcome challenges in translating basic research advances into clinical advances. Despite registry initiatives in SCD, the unavailability of descriptions of the selection process and copies of final data collection tools, coupled with incomplete representation of the SCD population hampers further research progress. This manuscript describes the SCDIC (Sickle Cell Disease Implementation Consortium) Registry development and makes the SCDIC Registry baseline and first follow-up data collection forms available for other SCD research efforts. RESULTS: Study data on 2400 enrolled patients across eight sites was stored and managed using Research Electronic Data Capture (REDCap). Standardized data collection instruments, recruitment and enrollment were refined through consensus of consortium sites. Data points included measures taken from a variety of validated sources (PHENX, PROMIS and others). Surveys were directly administered by research staff and longitudinal follow-up was coordinated through the DCC. Appended registry forms track medical records, event-related patient invalidation, pregnancy, lab reporting, cardiopulmonary and renal functions. CONCLUSIONS: The SCDIC Registry strives to provide an accurate, updated characterization of the adult and adolescent SCD population as well as standardized, validated data collecting tools to guide evidence-based research and practice.