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147 result(s) for "Roberts, Megan C."
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From blueprint to biobank: Leveraging expert recommendations for implementing change (ERIC) to pediatric cancer biobanking in Pakistan
In low- and middle-income countries, limited infrastructure and resources hinder biobank establishment, affecting specimen diversity. Addressing this gap is crucial for equitable health outcomes, as current databases are skewed towards Northern-European populations. In Pakistan, pediatric cancer biobanks are non-existent. Indus Hospital & Health Network (IHHN) in Karachi, with its large pediatric cancer unit, aims to establish a biobank to address region-specific pediatric cancer research needs. This manuscript describes the biobank implementation process using implementation science frameworks. The pediatric cancer biobank at IHHN collects FFPE specimens for solid tumors, and isolated mononuclear cells from peripheral blood and bone marrow of suspected acute leukemia. Implementation planning workgroups included clinicians, EMR, IT, management, senior leadership, IRB, and external support from UNC and St. Jude Children's Cancer Hospital. The selection of applicable ERIC (Expert Recommendations for Implementing Change) strategies through stakeholder workgroups considered scope, budget, and feasibility, and context. Standard protocols from ISBER and BCNet guided alignment with best practices. IHHN's past experiences and tacit knowledge gained through rapid, successful implementation also facilitated strategy selection. The EPIS framework (exploration, preparation, implementation, sustainment) was used to map and organize the selected intervention strategies. Biobank implementation at IHHN, organized by EPIS stages, has been described through a set of 41 implementation strategies. Of these, 34 were selected out of 73 originally published ERIC strategies, while 7 were added based on contextually based workgroup consensus. 599 acute leukemia and 1137 solid tumor specimens have been banked since inception of the biobank operations 2 years earlier. The implementation activities and challenges described include infrastructure, swift specimen collection, prior to treatment, and informed consent. The ancillary processes including training and quality control have also been described and related data presented. The implementation of Pakistan's first acute leukemia biobank using ERIC and EPIS frameworks offers a structured approach beneficial for settings with limited biobanking experience. This intervention aligns with recognized implementation science frameworks, while addressing aspects pertinent in low- and middle-income countries.
Advancing precision public health using human genomics: examples from the field and future research opportunities
Precision public health is a relatively new field that integrates components of precision medicine, such as human genomics research, with public health concepts to help improve population health. Despite interest in advancing precision public health initiatives using human genomics research, current and future opportunities in this emerging field remain largely undescribed. To that end, we provide examples of promising opportunities and current applications of genomics research within precision public health and outline future directions within five major domains of public health: biostatistics, environmental health, epidemiology, health policy and health services, and social and behavioral science. To further extend applications of genomics within precision public health research, three key cross-cutting challenges will need to be addressed: developing policies that implement precision public health initiatives at multiple levels, improving data integration and developing more rigorous methodologies, and incorporating initiatives that address health equity. Realizing the potential to better integrate human genomics within precision public health will require transdisciplinary efforts that leverage the strengths of both precision medicine and public health.
Development and initial testing of a multi-stakeholder intervention for Lynch syndrome cascade screening: an intervention mapping approach
Background Lynch syndrome is an underdiagnosed hereditary condition carrying an increased lifetime risk for colorectal and endometrial cancer and affecting nearly 1 million people in the United States. Cascade screening, systematic screening through family members of affected patients, could improve identification of Lynch syndrome, but this strategy is underused due to multi-level barriers including low knowledge about Lynch syndrome, low access to genetics services, and challenging family dynamics. Methods We used intervention mapping, a 6-step methodology to create stakeholder-driven interventions that meet the needs of a target population, to develop an intervention to improve cascade screening for Lynch syndrome. The intervention development process was guided by input from key stakeholders in Lynch syndrome care and patients. We conducted usability testing on the intervention with Lynch syndrome patients using qualitative semi-structured interviewing and rapid qualitative analysis. Results We developed a workbook intervention named Let’s Talk that addresses gaps in knowledge, skills, self-efficacy, outcome expectancy and other perceived barriers to cascade screening for Lynch syndrome. Let’s Talk contained educational content, goal setting activities, communication planning prompts and supplemental resources for patients to plan family communication. Evidence-based methods used in the workbook included information chunking, guided practice, goal setting and gain-framing. We conducted usability testing focused on the complexity and relative advantage of the intervention through 45-min virtual interviews with 10 adult patients with Lynch syndrome recruited from a national advocacy organization in the United States. Usability testing results suggested the intervention was acceptable in terms of complexity and relative advantage to other available resources, but additional information for communication with young or distant family members and a web-based platform could enhance the intervention’s usability. Conclusions Intervention mapping provided a framework for intervention development that addressed the unique needs of Lynch syndrome patients in overcoming barriers to cascade screening. Future work is needed to transform Let’s Talk into a web-based tool and evaluate the effectiveness of the intervention in clinical practice with patients and genetic counselors. Intervention mapping can be useful to researchers as an evidence-based technique to develop stakeholder-centered interventions for addressing the needs of other unique populations.
Complementary approaches to problem solving in healthcare and public health: implementation science and human-centered design
Complementary approaches to problem solving in healthcare and public health: implementation science and human-centered design”: Combining implementation science and human-centered design approaches is novel and these complementary approaches can be applied together to optimize the integration of evidence-based practices within clinical and public health settings.
Twitter use at the 2016 Conference on the Science of Dissemination and Implementation in Health: analyzing #DIScience16
Background Poor dissemination of research findings may hamper the reach and impact of scientific discoveries. One key emerging platform for research dissemination is social media, including Twitter. While Twitter and other social media are increasingly being used to disseminate research content presented during scientific conferences, few studies have investigated the extent to which these tools are used throughout conferences and how they are being used. The aim for this study was to better understand the use of Twitter during the 2016 Annual Conference on the Science of Dissemination and Implementation in Health (D&I conference). Methods We performed an analysis of Twitter use before, during, and after the 2016 D&I conference, which took place from December 14 to 15. All tweets (posted between December 1 and 31) that included the conference-specific hashtag (#DIScience16) were assessed. We identified 2639 tweets using the data analytics platform NUVI. We used NUVI software to generate statistics about reach, influence, mentions, and origin of the tweets. Individual tweet content was also assessed using DiscoverText and coded for disease category, implementation outcomes discussed, category of tweet, and conference track. Results A total of 2639 tweets were analyzed; 89.1% of the tweets were posted during the conference. A total of 389 unique users participated on Twitter, representing 31 states and 22 locations outside of the USA. Most (56.8%) tweets were re-tweets and were used for scientific promotion (50.6%). Key conference speakers and implementation outcomes (de-implementation, adaptation, and fidelity) were commonly discussed. Conclusions Our findings reveal that Twitter was used as a platform during the D&I conference, both to facilitate conference discussion and to promote scientific ideas. This work contributes to the existing data analytics and implementation science literature in two major ways: (1) by advancing knowledge of how social media is used during annual academic conferences and (2) by providing a deeper understanding of themes and emerging areas of interest in the dissemination and implementation sciences. Knowing specific topics of interest can help planners and scientists better understand the landscape of current and future implementation research and encourage new research dissemination strategies.
Precision public health in the era of genomics and big data
Precision public health (PPH) considers the interplay between genetics, lifestyle and the environment to improve disease prevention, diagnosis and treatment on a population level—thereby delivering the right interventions to the right populations at the right time. In this Review, we explore the concept of PPH as the next generation of public health. We discuss the historical context of using individual-level data in public health interventions and examine recent advancements in how data from human and pathogen genomics and social, behavioral and environmental research, as well as artificial intelligence, have transformed public health. Real-world examples of PPH are discussed, emphasizing how these approaches are becoming a mainstay in public health, as well as outstanding challenges in their development, implementation and sustainability. Data sciences, ethical, legal and social implications research, capacity building, equity research and implementation science will have a crucial role in realizing the potential for ‘precision’ to enhance traditional public health approaches. Human genetics, pathogen genomics, social and environmental data and AI are transforming public health—enabling more-precise interventions that account for heterogeneity in and across populations.
Proceedings from the 2023 transdisciplinary conference for future leaders in precision public health “Applying Implementation Science to Precision Public Health”
Precision public health (PPH) approaches use big data to inform tailored, population-level interventions. The field has roots in genomics, but it has expanded to encompass data-informed public health programs across various types of data or applications. The Precision Public Health Network hosted a 2023 conference focused on implementation science—the study of how to integrate PPH programs into practice. Some implementation needs that emerged across speakers included establishing robust evidence of clinical utility and feasibility, disseminating clinical best practices through guidelines and tools for providers, sharing tools or information to reduce duplicated efforts across settings, and considering context-specific factors. Considering feasibility, setting-specific factors, and meaningful engagement with relevant user groups throughout the research and implementation process are critical to the successful and sustainable implementation of PPH programs. The Network also hosted an interactive workshop to generate ideas and ongoing collaboration on essential outcomes or data measures for PPH programs, and strategies to center health equity in PPH. This conference and workshop are part of the ongoing work of the PPHN to convene experts across disciplines and settings, share knowledge, and galvanize the field of PPH.
Barriers and facilitators for cascade testing in genetic conditions: a systematic review
Cascade testing is the process of offering genetic counseling and testing to at-risk relatives of an individual who has been diagnosed with a genetic condition. It is critical for increasing the identification rates of individuals with these conditions and the uptake of appropriate preventive health services. The process of cascade testing is highly varied in clinical practice, and a comprehensive understanding of factors that hinder or enhance its implementation is necessary to improve this process. We conducted a systematic review to identify barriers and facilitators for cascade testing and searched PubMed, CINAHL via EBSCO, Web of Science, EMBASE, and the Cochrane Library for articles published from the databases’ inception to November 2018. Thirty articles met inclusion criteria. Barriers and facilitators identified from these studies at the individual-level were organized into the following categories: (1) demographics, (2) knowledge, (3) attitudes, beliefs, and emotional responses of the individual, and (4) perceptions of relatives, relatives’ responses, and attitudes toward relatives. At the interpersonal-level, barriers and facilitators were categorized as (1) family communication-, support- and dynamics-, and (2) provider-factors. Finally, barriers at the environmental-level relating to accessibility of genetic services were also identified. Our findings suggest that several individual, interpersonal and environmental factors may play a role in cascade testing. Future studies to further investigate these barriers and facilitators are needed to inform future interventions for improving the implementation of cascade testing for genetic conditions in clinical practice.
Pharmacogenetic testing in primary care could bolster depression treatment: A value proposition
Pharmacogenetic testing could reduce the time to identify a safe and effective medication for depression; however, it is underutilized in practice. Major depression constitutes the most common mental disorder in the US, and while antidepressant therapy can help, the current trial –and error approach can require patients to endure multiple medication trials before finding one that is effective. Tailoring the fit of pharmacogenetic testing with prescribers' needs across a variety of settings could help to establish a generalizable value proposition to improve likelihood of adoption. We conducted a study to explore the value proposition for health systems using pharmacogenetic testing for mental health medications through prescribers' real‐world experiences using implementation science concepts and systematic interviews with prescribers and administrators from four health care systems. To identify a value proposition, we organized the themes according to the Triple Aim framework, a leading framework for health care policy which asserts that high‐value care should focus on three key metrics: (1) better health care quality and (2) population‐level outcomes with (3) reduced per capita costs. Primary care providers whom we interviewed said that they value pharmacogenetic testing because it would provide more information about medications that they can prescribe, expanding their ability to identify medications that best‐fit patients and reducing their reliance on referrals to specialists; they said that this capacity would help meet patients' needs for access to mental health care through primary care. At the same time, prescribers expressed differing views about how pharmacogenetic testing can help with quality of care and whether their views about out‐of‐pocket cost would prevent them from offering it. Thus, implementation should focus on integrating pharmacogenetic testing into primary care and using strategies to support prescribers' interactions with patients.