scholarly journals The Implementation Science for Genomic Health Translation (INSIGHT) Study in Epilepsy: Protocol for a Learning Health Care System

10.2196/25576 ◽  
2021 ◽  
Vol 10 (3) ◽  
pp. e25576
Author(s):  
Elena Valeryevna Feofanova ◽  
Guo-Qiang Zhang ◽  
Samden Lhatoo ◽  
Ginger A Metcalf ◽  
Eric Boerwinkle ◽  
...  
Keyword(s):  
Patient Care ◽  
Implementation Science ◽  
Health Informatics ◽  
Domain Knowledge ◽  
Genomic Medicine ◽  
Science Research ◽  
Health Science ◽  
Science Center ◽  
Clinical Genomics ◽  
Genomic Knowledge

Background Genomic medicine is poised to improve care for common complex diseases such as epilepsy, but additional clinical informatics and implementation science research is needed for it to become a part of the standard of care. Epilepsy is an exemplary complex neurological disorder for which DNA diagnostics have shown to be advantageous for patient care. Objective We designed the Implementation Science for Genomic Health Translation (INSIGHT) study to leverage the fact that both the clinic and testing laboratory control the development and customization of their respective electronic health records and clinical reporting platforms. Through INSIGHT, we can rapidly prototype and benchmark novel approaches to incorporating clinical genomics into patient care. Of particular interest are clinical decision support tools that take advantage of domain knowledge from clinical genomics and can be rapidly adjusted based on feedback from clinicians. Methods Building on previously developed evidence and infrastructure components, our model includes the following: establishment of an intervention-ready genomic knowledge base for patient care, creation of a health informatics platform and linking it to a clinical genomics reporting system, and scaling and evaluation of INSIGHT following established implementation science principles. Results INSIGHT was approved by the Institutional Review Board at the University of Texas Health Science Center at Houston on May 15, 2020, and is designed as a 2-year proof-of-concept study beginning in December 2021. By design, 120 patients from the Texas Comprehensive Epilepsy Program are to be enrolled to test the INSIGHT workflow. Initial results are expected in the first half of 2023. Conclusions INSIGHT’s domain-specific, practical but generalizable approach may help catalyze a pathway to accelerate translation of genomic knowledge into impactful interventions in patient care. International Registered Report Identifier (IRRID) PRR1-10.2196/25576

scholarly journals The Implementation Science for Genomic Health Translation (INSIGHT) Study in Epilepsy: Protocol for a Learning Health Care System (Preprint)

2020 ◽  
Author(s):  
Elena Valeryevna Feofanova ◽  
Guo-Qiang Zhang ◽  
Samden Lhatoo ◽  
Ginger A Metcalf ◽  
Eric Boerwinkle ◽  
...  
Keyword(s):  
Patient Care ◽  
Implementation Science ◽  
Health Informatics ◽  
Domain Knowledge ◽  
Genomic Medicine ◽  
Science Research ◽  
Health Science ◽  
Science Center ◽  
Clinical Genomics ◽  
Genomic Knowledge

BACKGROUND Genomic medicine is poised to improve care for common complex diseases such as epilepsy, but additional clinical informatics and implementation science research is needed for it to become a part of the standard of care. Epilepsy is an exemplary complex neurological disorder for which DNA diagnostics have shown to be advantageous for patient care. OBJECTIVE We designed the Implementation Science for Genomic Health Translation (INSIGHT) study to leverage the fact that both the clinic and testing laboratory control the development and customization of their respective electronic health records and clinical reporting platforms. Through INSIGHT, we can rapidly prototype and benchmark novel approaches to incorporating clinical genomics into patient care. Of particular interest are clinical decision support tools that take advantage of domain knowledge from clinical genomics and can be rapidly adjusted based on feedback from clinicians. METHODS Building on previously developed evidence and infrastructure components, our model includes the following: establishment of an intervention-ready genomic knowledge base for patient care, creation of a health informatics platform and linking it to a clinical genomics reporting system, and scaling and evaluation of INSIGHT following established implementation science principles. RESULTS INSIGHT was approved by the Institutional Review Board at the University of Texas Health Science Center at Houston on May 15, 2020, and is designed as a 2-year proof-of-concept study beginning in December 2021. By design, 120 patients from the Texas Comprehensive Epilepsy Program are to be enrolled to test the INSIGHT workflow. Initial results are expected in the first half of 2023. CONCLUSIONS INSIGHT’s domain-specific, practical but generalizable approach may help catalyze a pathway to accelerate translation of genomic knowledge into impactful interventions in patient care. INTERNATIONAL REGISTERED REPORT PRR1-10.2196/25576

Factors affecting influenza vaccine uptake among health care workers in the Medical and Health Sciences Center of Debrecen University, Hungary

2012 ◽  
Vol 153 (13) ◽  
pp. 505-513 ◽  
Author(s):  
Piroska Orosi ◽  
Ágnes Borbély ◽  
Judit Szidor ◽  
János Sándor
Keyword(s):  
Health Care ◽  
Influenza Vaccination ◽  
Health Care Workers ◽  
Vaccination Rate ◽  
Internal Communication ◽  
Health Science ◽  
Vaccine Uptake ◽  
Science Center ◽  
Family Doctors ◽  
Care Workers

Influenza vaccination is the most effective way of influenza prevention. The vaccination rate is low worldwide. In Hungary, the vaccine is free of charge to health care workers and, therefore, the low vaccination rate is unaccountable. Aims: In this study, the authors wanted to explore those factors which influence the refusal of vaccination. Methods: The Health Science Center of Debrecen University has about 4000 employees. The authors adjusted a questionnaire with 45 questions and sent it to 525 randomly selected health care workers, 294 of whom responded (response rate, 56%). The Epiinfo software was used for statistical evaluation. Results: The respondents strongly agreed that the vaccine is free and easy to obtain at the workplace. Official recommendations of the occupational health, the Medical Association of Hungary and advice of the family doctors failed to influence the decision. However, a significant impact of communication with family members, friends and colleagues on the decision was documented. Conclusions: The results indicate that the most important tool in decision making of influenza vaccination is the internal communication, but this effect is not a permanent one. International data show highly variable vaccination rates (between 2.1% and 82%). A better vaccination rate (98% or above) may be achieved with a mandatory influenza vaccination program among health care workers. Orv. Hetil., 2012, 153, 505–513.

Pulmonary Hypertension Roundtable: COPD, IPF, and Pulmonary Hypertension: A Clinician's Dilemma

2013 ◽  
Vol 12 (3) ◽  
pp. 145-151
Keyword(s):  
Pulmonary Hypertension ◽  
Rhode Island ◽  
Medical Center ◽  
Puget Sound ◽  
Health Science ◽  
Pulmonary Vascular Disease ◽  
University Hospitals ◽  
Science Center ◽  
University Of Texas ◽  
Transplant Program

On October 9, 2013, a group of experts met by telephone to discuss PH in the setting of COPD and IPF. The group consisting of guest editor of this issue Jeffrey Edelman, MD, Head, Lung Transplant Program VA Puget Sound Health System, University of Washington; Deborah J. Levine, MD, Director, Pulmonary Hypertension Center, University of Texas Health Science Center at San Antonio; James Klinger, MD, Director, Rhode Island Hospital Pulmonary Hypertension Center; and Robert Schilz, DO, PhD, Director of Pulmonary Vascular Disease and Lung Transplantation, University Hospitals, Case Medical Center; provided perspective and insight into how clinicians can approach these patients most effectively.

scholarly journals PATH-19. MOLECULAR, HISTOLOGIC AND CLINICAL CHARACTERISTICS OF OLIGODENDROGLIOMAS: A MULTI-INSTITUTIONAL RETROSPECTIVE STUDY

2020 ◽  
Vol 22 (Supplement_2) ◽  
pp. ii168-ii168
Author(s):  
Antonio Dono ◽  
Kristin Alfaro-Munoz ◽  
Yuanqing Yan ◽  
Carlos Lopez-Garcia ◽  
Zaid Soomro ◽  
...  
Keyword(s):  
Health Science ◽  
Cancer Center ◽  
Subtotal Resection ◽  
Adjuvant Radiation ◽  
Science Center ◽  
Who Grade ◽  
Pik3ca Mutations ◽  
Increased Risk ◽  
Significant Difference ◽  
Grade 3

Abstract In the 2016 WHO classification of CNS tumors, oligodendrogliomas are molecularly defined by IDH1 or IDH2 mutations and 1p/19q co-deletion. Some reports suggest that PI3K pathway alterations may confer increased risk of progression and poor prognosis in oligodendroglioma. However, factors that influence prognosis in molecularly defined oligodendroglioma (mOGD) have not been thoroughly studied. Also, the benefits of adjuvant radiation and temozolomide in mOGDs remain to be determined. 107 mOGDs diagnosed between 2008-2018 at the University of Texas Health Science Center at Houston (n= 39) and MD Anderson Cancer Center (n= 68) were included. A retrospective review of the demographic, clinical, histologic, molecular, and outcomes were performed. Median age at diagnosis was 37 years and 61 (57%) patients were male. There were 64 (60%) WHO Grade 2 and 43 (40%) WHO Grade 3 tumors. Ninety-five (88.8%) tumors were IDH1-mutant and 12 (11.2%) were IDH2-mutant. Eighty-two (77%) patients were stratified as high-risk: older than 40-years and/or subtotal resection (RTOG 9802). Gross-total resection was achieved in 47 (45%) patients. Treatment strategies included observation (n= 15), temozolomide (n= 11), radiation (n= 13), radiation with temozolomide (n= 62) and other (n= 6). Our results show a benefit of temozolomide vs. observation in progression-free survival (PFS). However, no benefit in PFS or overall survival (OS) was observed when comparing radiation vs. radiation with temozolomide. PIK3CA mutations were detected in 15 (14%) cases, and patients with PIK3CA-mutant mOGDs showed worse OS (10.7-years vs 15.1-years, p= 0.009). Patients with WHO Grade 3 tumors had shorter PFS but no significant difference in OS was observed compared to grade 2. Our findings suggest that mOGDs harboring PIK3CA mutations have worse OS. Except for an advantage in PFS in temozolomide treated patients, adjuvant treatment with radiation or the combination of both, showed no significant advantage in terms of OS.

scholarly journals Reporting ethical approval in health and social science articles: an audit of adherence to GDPR and national legislation

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Kjell Asplund ◽  
Kerstin Hulter Åsberg
Keyword(s):  
Social Sciences ◽  
Social Science ◽  
Social Science Research ◽  
Personal Data ◽  
Science Research ◽  
Health Sciences ◽  
Health Science ◽  
Ethical Review ◽  
General Data Protection Regulation ◽  
Ethical Approval

Abstract Background Previous studies have indicated that failure to report ethical approval is common in health science articles. In social sciences, the occurrence is unknown. The Swedish Ethics Review Act requests that sensitive personal data, in accordance with the EU General Data Protection Regulation (GDPR), should undergo independent ethical review, irrespective of academic discipline. We have explored the adherence to this regulation. Methods Using the Web of Science databases, we reviewed 600 consecutive articles from three domains (health sciences with and without somatic focus and social sciences) based on identifiable personal data published in 2020. Results Information on ethical review was lacking in 12 of 200 health science articles with somatic focus (6%), 21 of 200 health science articles with non-somatic focus (11%), and in 54 of 200 social science articles (27%; p < 0.001 vs. both groups of health science articles). Failure to report on ethical approval was more common in (a) observational than in interventional studies (p < 0.01), (b) articles with only 1–2 authors (p < 0.001) and (c) health science articles from universities without a medical school (p < 0.001). There was no significant association between journal impact factor and failure to report ethical approval. Conclusions We conclude that reporting of research ethics approval is reasonably good, but not strict, in health science articles. Failure to report ethical approval is about three times more frequent in social sciences compared to health sciences. Improved adherence seems needed particularly in observational studies, in articles with few authors and in social science research.

Clinical genomics in the 21st century: The fine balance between ethics and science

2021 ◽  
pp. 147775092110366
Author(s):  
Terence YS Liew ◽  
Chun Y Khoo
Keyword(s):  
Clinical Practice ◽  
Informed Consent ◽  
21St Century ◽  
Preventive Medicine ◽  
Genomic Medicine ◽  
Traditional Practices ◽  
Current Clinical Practice ◽  
Common Goal ◽  
Clinical Genomics ◽  
Ethical Concerns

The 21st century has been revolutionary for the field of clinical genomics, with major advancements and breakthroughs over the years. It is now considered an instrumental tool in clinical and preventive medicine and has been used on a day-to-day basis to complement current clinical practice. However, with advancements in genomics comes greater bioethical concerns, which becomes increasingly complex with more cutting-edge technology. Some of the major ethical concerns include obtaining informed consent, possibility for genetic enhancements and eugenics, genomic equity and potential discrimination and cloning. It is imperative that we appreciate the benefits of genomic medicine in complementing traditional practices, identify and address the ethical concerns with relation to the practice of genomic medicine, and to ensure a common goal of improving human lives. With these in mind, the practice of genomics can have maximum impact in the collective health of the population, with greater benefit to all.

scholarly journals Indispensability of Clinical Bioinformatics for Effective Implementation of Genomic Medicine in Pathology Laboratories

ACI Open ◽  
2020 ◽  
Vol 04 (02) ◽  
pp. e167-e172
Author(s):  
Srikar Chamala ◽  
Siddardha Majety ◽  
Shesh Nath Mishra ◽  
Kimberly J. Newsom ◽  
Shaileshbhai Revabhai Gothi ◽  
...  
Keyword(s):  
Patient Care ◽  
Clinical Laboratory ◽  
Clinical Care ◽  
Genomic Medicine ◽  
Clinical Pathology ◽  
Genetic Mutation ◽  
Genomic Research ◽  
Pathology Laboratory ◽  
Clinical Bioinformatics ◽  
Effective Implementation

AbstractPatient care is rapidly evolving toward the inclusion of precision genomic medicine when genomic tests are used by clinicians to determine disease predisposition, prognosis, diagnosis, and improve therapeutic decision-making. However, unlike other clinical pathology laboratory tests, the development, deployment, and delivery of genomic tests and results are an intricate process. Genomic technologies are diverse, fast changing, and generate massive data. Implementation of these technologies in a Clinical Laboratory Improvement Amendments-certified and College of American Pathologists-accredited pathology laboratory often require custom clinical grade computational data analysis and management workflows. Additionally, accurate classification and reporting of clinically actionable genetic mutation requires well-curated disease/application-specific knowledgebases and expertise. Moreover, lack of “out of the box” technical features in electronic health record systems necessitates custom solutions for communicating genetic information to clinicians and patients. Genomic data generated as part of clinical care easily adds great value for translational research. In this article, we discuss current and future innovative clinical bioinformatics solutions and workflows developed at our institution for effective implementation of precision genomic medicine across molecular pathology, patient care, and translational genomic research.

scholarly journals Development of a Remote Public Health Advanced Pharmacy Practice Experience in Response to COVID-19

2021 ◽  
pp. 089719002110048
Author(s):  
Tyler Marie Kiles ◽  
Tracy Hagemann ◽  
Brianna Felts ◽  
Catherine Crill
Keyword(s):  
Public Health ◽  
Disaster Response ◽  
Pharmacy Practice ◽  
Health Department ◽  
Health Science ◽  
Science Center ◽  
Health Crisis ◽  
University Of Tennessee ◽  
Practice Experience ◽  
Phone Calls

Objectives: In order to meet the needs of the COVID-19 public health crisis and to actively engage students in patient care opportunities, the University of Tennessee Health Science Center College of Pharmacy in partnership with the Tennessee Health Department, developed a remote Public Health Advanced Pharmacy Practice Experience (APPE) Elective. The objectives of this paper are to describe the development of and students’ experiences and learning outcomes during the elective. Faculty preceptor and experiential administrator’s perspectives are also described. Methods: This month-long APPE was developed in mid-March and delivered in April and May of 2020. The students volunteered in-person with the State of Tennessee COVID-19 Hotline call centers and conducted topic discussions and assignments virtually with a remote preceptor. Results: A total of 16 students completed this rotation experience. Student ratings of the experience were positive, and their knowledge improved in all topic areas. Students collectively completed approximately 700 hours manning the COVID-19 hotline and logged over 1,000 phone calls. Conclusions: In a time of unprecedented disruption to experiential learning, the development of this unique public health APPE directly benefited the college, the students, and the citizens of our state. The APPE described in this paper could be replicated in additional waves of the pandemic or adapted for similar disaster response.

scholarly journals Enhancing Competency in Professionalism: Targeting Resident Advance Directive Education

2010 ◽  
Vol 2 (2) ◽  
pp. 278-282 ◽  
Author(s):  
Colleen Y. Colbert ◽  
Curtis Mirkes ◽  
Paul E. Ogden ◽  
Mary Elizabeth Herring ◽  
Christian Cable ◽  
...  
Keyword(s):  
Internal Medicine ◽  
Medical School ◽  
Advance Directives ◽  
Advance Directive ◽  
Residency Program ◽  
Health Science ◽  
Science Center ◽  
Sufficient Knowledge ◽  
Significant Difference ◽  
School Curricula

Abstract Background Education about advance directives typically is incorporated into medical school curricula and is not commonly offered in residency. Residents' experiences with advance directives are generally random, nonstandardized, and difficult to assess. In 2008, an advance directive curriculum was developed by the Scott & White/Texas A&M University System Health Science Center College of Medicine (S&W/Texas A&M) internal medicine residency program and the hospital's legal department. A pilot study examining residents' attitudes and experiences regarding advance directives was carried out at 2 medical schools. Methods In 2009, 59 internal medicine and family medicine residents (postgraduate year 2–3 [PGY-2, 3]) completed questionnaires at S&W/Texas A&M (n  =  32) and The University of Texas Medical School at Houston (n  =  27) during a validation study of knowledge about advance directives. The questionnaire contained Likert-response items assessing attitudes and practices surrounding advance directives. Our analysis included descriptive statistics and analysis of variance (ANOVA) to compare responses across categories. Results While 53% of residents agreed/strongly agreed they had “sufficient knowledge of advance directives, given my years of training,” 47% disagreed/strongly disagreed with that statement. Most (93%) agreed/strongly agreed that “didactic sessions on advance directives should be offered by my hospital, residency program, or medical school.” A test of responses across residency years with ANOVA showed a significant difference between ratings by PGY-2 and PGY-3 residents on 3 items: “Advance directives should only be discussed with patients over 60,” “I have sufficient knowledge of advance directives, given my years of training,” and “I believe my experience with advance directives is adequate for the situations I routinely encounter.” Conclusion Our study highlighted the continuing need for advance directive resident curricula. Medical school curricula alone do not appear to be sufficient for residents' needs in this area.

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