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Biobanking for better healthcare.

ABSTRACT: Translational cancer research is highly dependent of large series of cases including high quality samples and their associated data. Comprehensive Cancer Centers should be involved in networks to enable large-scale multi-center research projects between the centers [Ringborg, U., de Valeriola, D., van Harten, W., Llombart-Bosch, A., Lombardo, C., Nilsson, K., Philip, T., Pierotti, M.A., Riegman, P., Saghatchian, M., Storme, G., Tursz, T., Verellen, D, 2008. Improvement of European translational cancer research. Collaboration between comprehensive cancer centers. Tumori 94, 143-146.]. Combating cancer knows many frontiers. Research is needed for prevention as well as better care for those who have acquired the disease. This implies that human samples for cancer research need to be sourced from distinct forms of biobanking. An easier access to these samples for the scientific community is considered as the main bottleneck for research for health, and biobanks are the most adequate site to try to resolve this issue [Ozols, R.F., Herbst, R.S., Colson, Y.L., Gralow, J., Bonner, J., Curran Jr., W.J., Eisenberg, B.L., Ganz, P.A., Kramer, B.S., Kris, M.G., Markman, M., Mayer, R.J., Raghavan, D., Reaman, G.H., Sawaya, R., Schilsky, R.L., Schuchter, L.M., Sweetenham, J.W., Vahdat, L.T., Winn, R.J., and the American Society of Clinical Oncology, 2007. Clinical cancer advances 2006: major research advances in cancer treatment, prevention, and screening: a report from the American Society of Clinical Oncology. J. Clin. Oncol. 25, 146-162.]. However, biobanks should not be considered a static activity. On the contrary, biobanking is a young discipline [Morente, M.M., Fernandez, P.L., de Alava, E. Biobanking: old activity or young discipline? Semin. Diagn. Pathol., in press.], which need continuously evolve according to the permanent development of new techniques and new scientific goals. To accomplish current requirements of the scientific community biobanks need to face some essential challenges including an appropriate design, harmonized and more suitable procedures, and sustainability, all of them in the framework of their ethic, legal and social dimensions. This review therefore presents an overview on these issues, based on the works and discussions of the Marble Arch International Working Group on Biobanking for Biomedical Research, integrated by experts in biobanking from five continents.

SUBMITTER: Riegman PH

PROVIDER: S-EPMC5527804 | biostudies-other | 2008 Oct

REPOSITORIES: biostudies-other

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Project description:Objective: To identify processes to engage stakeholders in healthcare Simulation Modeling (SM), and the impacts of this engagement on model design, model implementation, and stakeholder participants. To investigate how engagement process may lead to specific impacts. Data Sources: English-language articles on health SM engaging stakeholders in the MEDLINE, EMBASE, Scopus, Web of Science and Business Source Complete databases published from inception to February 2020. Study Design: A systematic review of the literature based on a priori protocol and reported according to PRISMA guidelines. Extraction Methods: Eligible articles were SM studies with a health outcome which engaged stakeholders in model design. Data were extracted using a data extraction form adapted to be specific for stakeholder engagement in SM studies. Data were analyzed using summary statistics, deductive and inductive content analysis, and narrative synthesis. Principal Findings: Thirty-two articles met inclusion criteria. Processes used to engage stakeholders in healthcare SM are heterogenous and often based on intuition rather than clear methodological frameworks. These processes most commonly involve stakeholders across multiple SM stages via discussion/dialogue, interviews, workshops and meetings. Key reported impacts of stakeholder engagement included improved model quality/accuracy, implementation, and stakeholder decision-making. However, for all but four studies, these reports represented author perceptions rather than formal evaluations incorporating stakeholder perspectives. Possible process enablers of impact included the use of models as "boundary objects" and structured facilitation via storytelling to promote effective communication and mutual understanding between stakeholders and modelers. Conclusions: There is a large gap in the current literature of formal evaluation of SM stakeholder engagement, and a lack of consensus about the processes required for effective SM stakeholder engagement. The adoption and clear reporting of structured engagement and process evaluation methodologies/frameworks are required to advance the field and produce evidence of impact.

Project description:ObjectiveThe recent refugee crisis has resulted in the largest burden of displacement in history, with the US being the top resettlement country since 1975. Texas welcomed the second most US-bound refugees in 2016, with a large percentage arriving in San Antonio. Yet, the composition of the San Antonio refugees has not been described and their healthcare needs remain ill-defined. Through this study, we aim at elucidating their demographics and healthcare profiles, with the goal of devising recommendations to help guide refugee program development and guide other refugee resettlement programs.MethodsData from 731 charts belonging to 448 patients at the San Antonio Refugee Health Clinic (SARHC) were extracted and analyzed. Data included age, gender, country of origin, first language, interpretation need, health insurance status, medical history, vital signs, diagnoses, and prescribed medications.ResultsWomen constituted the majority of patients (n = 267; 56.4%), and the median age of all patients was 39 (Q1:26, Q3:52). Nepali-speaking Bhutanese patients were the most represented group (n = 107, 43.1%), followed by Iraqi (n = 35, 14.1%), Burmese (n = 30, 12.1%), and Iranian (n = 19, 7.7%) refugees. Of those who responded, 200 (86.6%) did not have any form of health insurance. Additionally, 262 (50.9%) had a body-mass index (BMI) in the overweight or obese range. Further, 61.4% (n = 337) had blood pressures in the hypertensive range, while 9.3% (n = 51) had an elevated blood pressure. On average, each patient had 1.9 complaints, with abdominal pain, headaches, and cough being the predominant complaints. Allergic rhinitis, viral upper respiratory infections, and elevated blood pressure were the most common diagnoses. However, the list of common diagnoses differed per country of origin.ConclusionThe SARHC demographics were different from those of other Texas refugees. The rate of the uninsured and the burden of non-communicable diseases were high. Furthermore, each refugee subgroup had a different set of common problems. These findings reveal important considerations for refugee healthcare providers and the unique approach that may be required for different communities.

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Biobanking for better healthcare.

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