Creating accessible Spanish language materials for Clinical Sequencing Evidence-Generating Research consortium genomic projects: challenges and lessons learned

2021 ◽  
Vol 18 (5) ◽  
pp. 441-454
Author(s):  
Nangel M Lindberg ◽  
Amanda M Gutierrez ◽  
Kathleen F Mittendorf ◽  
Michelle A Ramos ◽  
Beatriz Anguiano ◽  
...  
Keyword(s):  
Underserved Populations ◽  
Lessons Learned ◽  
Spanish Speakers ◽  
Return Of Results ◽  
Sufficient Time ◽  
Clinical Sequencing ◽  
Study Materials ◽  
Genomics Research ◽  
The Usa ◽  
Research Consortium

Aim: To increase Spanish speakers' representation in genomics research, accessible study materials on genetic topics must be made available in Spanish. Materials & methods: The Clinical Sequencing Evidence-Generating Research consortium is evaluating genome sequencing for underserved populations. All sites needed Spanish translation of recruitment materials, surveys and return of results. Results: We describe our process for translating site-specific materials, as well as shared measures across sites, to inform future efforts to engage Spanish speakers in research. Conclusion: In translating and adapting study materials for roughly 1000 Spanish speakers across the USA, and harmonizing translated measures across diverse sites, we overcame numerous challenges. Translation should be performed by professionals. Studies must allocate sufficient time, effort and budget to translate and adapt participant materials.

scholarly journals Approaches to carrier testing and results disclosure in translational genomics research: The clinical sequencing exploratory research consortium experience

2018 ◽  
Vol 6 (6) ◽  
pp. 898-909 ◽  
Author(s):  
Kathryn M. Porter ◽  
Tia L. Kauffman ◽  
Barbara A. Koenig ◽  
Katie L. Lewis ◽  
Heidi L. Rehm ◽  
...  
Keyword(s):  
Carrier Testing ◽  
Exploratory Research ◽  
Translational Genomics ◽  
Clinical Sequencing ◽  
Genomics Research ◽  
Results Disclosure ◽  
Research Consortium

scholarly journals The Clinical Sequencing Evidence-Generating Research Consortium: Integrating Genomic Sequencing in Diverse and Medically Underserved Populations

2018 ◽  
Vol 103 (3) ◽  
pp. 319-327 ◽  
Author(s):  
Laura M. Amendola ◽  
Jonathan S. Berg ◽  
Carol R. Horowitz ◽  
Frank Angelo ◽  
Jeannette T. Bensen ◽  
...  
Keyword(s):  
Underserved Populations ◽  
Medically Underserved ◽  
Genomic Sequencing ◽  
Clinical Sequencing ◽  
Medically Underserved Populations ◽  
Research Consortium

scholarly journals Solutions for Unexpected Challenges Encountered when Integrating Research Genomics Results into the EHR

ACI Open ◽  
2020 ◽  
Vol 04 (02) ◽  
pp. e132-e135
Author(s):  
Luke V. Rasmussen ◽  
Christin Hoell ◽  
Maureen E. Smith ◽  
Rex Chisholm ◽  
Justin Starren ◽  
...  
Keyword(s):  
Genetic Research ◽  
Lessons Learned ◽  
Return Of Results ◽  
Patient Portal ◽  
Test Results ◽  
Research Results ◽  
Genetic Test Results ◽  
Future Return ◽  
New Research ◽  
Genetic Results

Abstract Background While there have been published reports detailing technical challenges of incorporating genetic test results into the electronic health record (EHR) with proposed solutions, less has been published about unanticipated sociotechnological or practical communication challenges involved in this process. Objectives This study was aimed to describe unanticipated issues that arose returning genetic research results through the EHR as part of the National Human Genome Research Institute (NHGRI)-funded electronic Medical Records and Genomics (eMERGE) 3 consortium, and provide lessons learned for future implementations Methods We sequenced 3,000 participants on a 109-gene panel and returned genetic results initially in person and/or by letter, with a later release directly into the EHR and patient portal. Results When results were returned through the EHR, multiple participants expressed confusion and contacted the health system, resulting in our institution temporarily freezing our return of research results. Discussion We determined the likely causes of this issue to be (1) the delay between enrollment and results return, (2) inability to personalize mass e-mail messages announcing new research test results in the EHR, (3) limited space for description of test results in the EHR, and (4) the requirement to list an ordering physician for research results in the EHR. For future return of results, we propose sending preparatory e-mails to participants, including screenshots of how they can expect to see their results presented in the EHR portal. Conclusion We hope our lessons learned can provide helpful guidance to other sites implementing research genetic results into the EHR and can encourage EHR developers to incorporate greater flexibility in the future.

scholarly journals Implementation of Remote Interventions in Older Adults: Lessons Learned During COVID-19 Isolation

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 950-950
Author(s):  
Jamie Rincker ◽  
Jessica Wallis ◽  
Angela Fruik ◽  
Alyssa King ◽  
Kenlyn Young ◽  
...  
Keyword(s):  
Older Adults ◽  
Weight Loss ◽  
Nutrition Education ◽  
Underserved Populations ◽  
Smart Phone ◽  
Dropout Rate ◽  
Lessons Learned ◽  
Drop Out ◽  
Electronic Submission ◽  
Weight Loss Interventions

Abstract Recommendations for older adults to socially isolate during the COVID-19 pandemic will have lasting impacts on body weight and physical activity. Due to the pandemic, two in-person RCT weight-loss interventions in obese older adults with prediabetes, Veterans Achieving Weight Loss and Optimizing Resilience-Using Protein (VALOR-UP, n=12) and the Egg-Supplemented Pre-Diabetes Intervention Trial (EGGSPDITE, n=7), were converted to remote formats and weekly nutrition (EGGSPDITE and VALOR-UP) and exercise (VALOR-UP only) classes were delivered using synchronous videoconference technology (Webex); classes were accessed via tablet/desktop/laptop or smart phone. Steps taken to transition participants to remote formats included technology training, implementation of staff tech-support, and delivery of nutrition education, tablets, scales, and exercise bands. The time to successfully transition participants was 1 week for early adopters (n=10) and up to 4 weeks for those with significant technology barriers (n=9); their difficulties included internet access, camera and microphone access and use, and electronic submission of weight and food records. Even with these challenges, in the first 3 months of remote delivery, participant dropout rate was low (10.5%, n=2), attendance was high (87.6% nutrition class (n=19); 76.4% exercise class (VALOR-UP, n=12)), and weight loss was successful (>2.5% loss (n=13); >5% loss (n=8)), showing that lifestyle interventions can be successfully adapted for remote delivery. Remote interventions also have potential for use in non-pandemic times to reach underserved populations who often have high drop-out rates due to caretaker roles, transportation limitations, and work schedules. These barriers were significantly reduced using a virtual intervention platform.

Virtual Primary Care Implementation during COVID-19 in High-Income Countries: A Scoping Review (Preprint)

2021 ◽  
Author(s):  
Kristina De Vera ◽  
Priyanka Challa ◽  
Rebecca H Liu ◽  
Kaitlin Fuller ◽  
Anam Shahil Feroz ◽  
...  
Keyword(s):  
Primary Care ◽  
Scoping Review ◽  
Primary Care Physicians ◽  
Underserved Populations ◽  
High Income ◽  
Lessons Learned ◽  
Regulatory Policies ◽  
Care Services ◽  
Virtual Care ◽  
Primary Care Services

BACKGROUND Primary care physicians across the world are grappling with adopting virtual services to provide appropriate patient care during the COVID-19 pandemic. As the crisis continues, it is imperative to recognize the wide-scale barriers and seek strategies to mitigate the challenges of rapid adoption to virtual care felt by patients and physicians alike. OBJECTIVE The purpose of this scoping review was to map the challenges, strategies, and lessons learned from high-income countries that can be mobilized to inform decision-makers on how to best implement virtual primary care services during and after the COVID-19 pandemic. Moreover, the findings of our scoping review identified the barriers and strategies within the Quadruple Aim components, which may prove to be an effective implementation strategy for virtual care adoption in primary care settings. METHODS The two concepts of virtual care and COVID-19 were searched in MEDLINE, EMBASE, and CINAHL on Aug 10, 2020, and Scopus was searched on Aug 15, 2020. The database searches returned 10,549 citations and an additional 766 citations were retrieved from searching the citations from the reference lists of articles that met all inclusion criteria. After deduplication, 6,580 unique citations remained. Following title and abstract screening, 1,260 full-text articles were reviewed, of which 49 articles were included for data extraction, and 38 articles met the eligibility criteria for inclusion in the review. RESULTS Seven factors were identified as major barriers to the implementation of virtual primary care. Of the 38 articles included in this scoping review, 20 (53%) articles focused on challenges to equitable access to care, specifically regarding the lack of access to internet, smartphones, and Internet bandwidth for rural, seniors, and underserved populations. The second most common factor discussed in the articles was the lack of funding for virtual care (n= 14; 37%), such as inadequate reimbursement policies for virtual care. Other factors included negative patient and clinician perceptions of virtual care (n=11; 29%), lack of appropriate regulatory policies (n= 10, 26%), inappropriate clinical workflows (n= 9, 24%), lack of virtual care infrastructure (n= 8; 21%), and lastly, a need for appropriate virtual care training and education for clinicians (n=5;13%). CONCLUSIONS This review identified several barriers and strategies to mitigate those barriers that address the challenges of virtual primary care implementation related to equity, regulatory policies, technology and infrastructure, education, clinician and patient experience, clinical workflows, and funding for virtual care. These strategies included providing equitable alternatives to access care for patients with limited technical literacy and English proficiency and altering clinical workflows to integrate virtual care services. As many countries enter potential subsequent waves of the COVID-19 pandemic, applying early lessons learned to mitigate implementation barriers can help with the transition to equitable and appropriate virtual primary care services.

Reflecting or ruminating: listening to the regrets of life science leaders

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Helen Mary Meldrum
Keyword(s):  
Chief Executive Officers ◽  
Life Science ◽  
Negative Emotion ◽  
Chief Executive ◽  
Positive Influence ◽  
Lessons Learned ◽  
Business Leaders ◽  
Content Type ◽  
The Usa ◽  
Executive Officers

PurposeThe overwhelming frequency of failure in trying to bring a safe and effective biotech, pharmaceutical or medical device product to market is truly astounding. This research synthesizes industry leaders' insights on lessons learned from reflecting on professional disappointments.Design/methodology/approachThis research used a qualitative approach to learning from the Chief Executive Officers (CEOs), Chief Scientific Officers (CSOs) and Chief Medical Officers (CMOs) of the most successful life science firms in the USA. A total of 45 industry leaders were interviewed regarding their lingering regrets about their career misadventures.FindingsRegrets were unavoidable because there were opportunity costs for every choice each leader made. Commentary about wisdom gained comprised themes regarding valuable time lost, strategies that could have been enacted, products that failed and essential personnel who were not managed optimally. Contrary to expectations, there was little mention of money that was squandered.Originality/valueNot felt as a solely negative emotion, regrets were recognized by these leaders as a potentially positive influence on their future decisions. Not felt as a solely negative emotion, regret was recognized by these leaders as a potentially positive influence on their future decisions. This exploratory study suggests that learning from retrospective and anticipated regrets benefits life science leaders in gaining clarity of thought regarding their current business challenges. Because prior research on the value of psychological regrets has mostly relied on limited samples, this inquiry contributes a new vantage point by examining a unique population of senior business leaders, thus providing broader applicability to the organizational literature.

Implementing a Geohazard Integrity Management Program: Statistics and Lessons Learned Over 15 Years

2014 ◽  
Author(s):  
Alex J. Baumgard ◽  
Tara L. Coultish ◽  
Gerry W. Ferris
Keyword(s):  
Management System ◽  
Management Program ◽  
Lessons Learned ◽  
Proactive Approach ◽  
Oil Pipelines ◽  
Pipeline Networks ◽  
The Usa ◽  
Integrity Management ◽  
Pipeline Failures ◽  
Program Challenges

Over the last 15 years, BGC Engineering Inc. has developed and implemented a geohazards Integrity Management Program (IMP) with 12 major pipeline operators (consisting of gas and oil pipelines and of both gathering and transmission systems). Over this time, the program has been applied to the assessment of approximately 13,500 individual hydrotechnical and geotechnical geohazard sites spanning approximately 63,000 km of operating pipelines in Canada and the USA. Hydrotechnical (watercourse) and geotechnical (slope) hazards are the primary types of geohazards that have directly contributed to pipeline failures in Canada. As with all IMPs, the core objectives of a geohazard management system are to ensure a proactive approach that is repeatable and defensible. In order to meet these objectives, the program allows for varying levels of intensity of inspection and a recommended timescale for completion of actions to manage the identified geohazards in accordance with the degree of hazard that the site poses to the pipeline. In this way, the sites are managed in a proactive manner while remaining flexible to accommodate the most current conditions at each site. This paper will provide a background to the key components of the program related specifically to existing operating pipeline systems, present pertinent statistics on the occurrence of various types of geohazards based on the large dataset of inspections, and discuss some of the lessons learned in the form of program results and program challenges from implementing a geohazard integrity management system for a dozen operators with different ages of systems, complexity of pipeline networks, and in varied geographic settings.

scholarly journals Premature mortality attributable to COVID-19: potential years of life lost in 17 countries around the world, January–August 2020

2022 ◽  
Vol 22 (1) ◽  
Author(s):  
Maider Pagola Ugarte ◽  
Souzana Achilleos ◽  
Annalisa Quattrocchi ◽  
John Gabel ◽  
Ourania Kolokotroni ◽  
...  
Keyword(s):  
Age Groups ◽  
Premature Mortality ◽  
The United States ◽  
Cape Verde ◽  
Years Of Life Lost ◽  
Demographic Groups ◽  
The World ◽  
The Usa ◽  
Research Consortium ◽  
The Impact

Abstract Background Understanding the impact of the burden of COVID-19 is key to successfully navigating the COVID-19 pandemic. As part of a larger investigation on COVID-19 mortality impact, this study aims to estimate the Potential Years of Life Lost (PYLL) in 17 countries and territories across the world (Australia, Brazil, Cape Verde, Colombia, Cyprus, France, Georgia, Israel, Kazakhstan, Peru, Norway, England & Wales, Scotland, Slovenia, Sweden, Ukraine, and the United States [USA]). Methods Age- and sex-specific COVID-19 death numbers from primary national sources were collected by an international research consortium. The study period was established based on the availability of data from the inception of the pandemic to the end of August 2020. The PYLL for each country were computed using 80 years as the maximum life expectancy. Results As of August 2020, 442,677 (range: 18–185,083) deaths attributed to COVID-19 were recorded in 17 countries which translated to 4,210,654 (range: 112–1,554,225) PYLL. The average PYLL per death was 8.7 years, with substantial variation ranging from 2.7 years in Australia to 19.3 PYLL in Ukraine. North and South American countries as well as England & Wales, Scotland and Sweden experienced the highest PYLL per 100,000 population; whereas Australia, Slovenia and Georgia experienced the lowest. Overall, males experienced higher PYLL rate and higher PYLL per death than females. In most countries, most of the PYLL were observed for people aged over 60 or 65 years, irrespective of sex. Yet, Brazil, Cape Verde, Colombia, Israel, Peru, Scotland, Ukraine, and the USA concentrated most PYLL in younger age groups. Conclusions Our results highlight the role of PYLL as a tool to understand the impact of COVID-19 on demographic groups within and across countries, guiding preventive measures to protect these groups under the ongoing pandemic. Continuous monitoring of PYLL is therefore needed to better understand the burden of COVID-19 in terms of premature mortality.

The African American Tobacco Control Leadership Council: Advocating for a menthol cigarette ban in San Francisco, California

2021 ◽  
pp. tobaccocontrol-2020-056215
Author(s):  
Sarah D Mills ◽  
Carol O McGruder ◽  
Valerie B Yerger
Keyword(s):  
African American ◽  
Tobacco Control ◽  
San Francisco ◽  
Community Support ◽  
Control Policy ◽  
Tobacco Product ◽  
Lessons Learned ◽  
Menthol Cigarette ◽  
The Usa ◽  
Product Sales

The African American Tobacco Control Leadership Council (AATCLC) is an advocacy group that works to inform the direction of tobacco control policy and priorities in the USA. This article narrates the AATCLC’s work advocating for a comprehensive, flavoured tobacco product sales ban in San Francisco, California. Recommendations for tobacco control advocates and lessons learned from their work are provided. The article concludes by discussing conditions necessary to enact the policy. These include having a dedicated advocacy team, community support, a policy sponsor, and clear and repeated messaging that is responsive to community concerns.

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