Community education to enhance the more equitable use of precision medicine in Northern Manhattan

Hillyer, Grace Clarke; Schmitt, Karen M.; Reyes, Andria; Cruz, Álejandro; Lizardo, Maria; Schwartz, Gary K.; Terry, Mary Beth

doi:10.1002/jgc4.1244

Cited by 12 publications

(10 citation statements)

References 30 publications

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“…17 Studies have recently started to evaluate approaches to increase patient understanding and participation in precision medicine decisions, but much work remains to be done. 18,19 To address patient concerns regarding medico-legal implications of germline testing, providers would be well served by additional familiarity with legislation, such as the Genetic Information Nondiscrimination Act (GINA). GINA ensures protection from discrimination in future health insurance and employment in most scenarios, but offers no protections regarding future life insurance, long-term care, or disability insurance.…”

Section: Theme 6: Capacity For Organizational Changementioning

confidence: 99%

Barriers and facilitators of germline genetic evaluation for prostate cancer

Loeb

Nolasco

et al. 2021

The Prostate

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Background: Genetic counseling and germline testing have an increasingly important role for patients with prostate cancer (PCa); however, recent data suggests they are underutilized. Our objective was to perform a qualitative study of the barriers and facilitators of germline genetic evaluation among physicians who manage PCa.Methods: We conducted semi-structured interviews with medical oncologists, radiation oncologists, and urologists from different U.S. practice settings until thematic saturation was achieved at n = 14. The interview guide was based on the Tailored Implementation in Chronic Diseases Framework to identify key determinants of practice. Interview transcripts were independently coded by ≥2 investigators using a constant comparative method.Results: The decision to perform or refer for germline genetic evaluation is affected by factors at multiple levels. Although patient factors sometimes play a role, the dominant themes in the decision to conduct germline genetic evaluation were at the physician and organizational level. Physician knowledge, coordination of care, perceptions of the guidelines, and concerns about cost were most frequently discussed as the main factors affecting utilization of germline genetic evaluation.Conclusions: There are currently numerous barriers to implementation of germline genetic evaluation for PCa. Efforts to expand physician education, to develop tools to enhance genetics in practice, and to facilitate coordination of care surrounding genetic evaluation are important to promote guideline-concordant care.

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Section: Theme 6: Capacity For Organizational Changementioning

confidence: 99%

Barriers and facilitators of germline genetic evaluation for prostate cancer

Loeb

Nolasco

et al. 2021

The Prostate

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“…In addition, the involvement of patients in specific brief training activities might be an achievable and useful objective, as recent evidence shows that brief community educational program can improve knowledge of complex genomic concepts in the general population. 71 In summary, stakeholders will need to assess the impact of these barriers on the application of precision psychiatry. Changes in the organization of mental healthcare as well as of funding policies and creation of proper legislation will be crucial to address them.…”

Section: Barriers To Precision Medicine In Psychiatrymentioning

confidence: 99%

<p>Challenges and Future Prospects of Precision Medicine in Psychiatry</p>

Manchia¹,

Pisanu²,

Squassina³

et al. 2020

PGPM

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Precision medicine is increasingly recognized as a promising approach to improve disease treatment, taking into consideration the individual clinical and biological characteristics shared by specific subgroups of patients. In specific fields such as oncology and hematology, precision medicine has already started to be implemented in the clinical setting and molecular testing is routinely used to select treatments with higher efficacy and reduced adverse effects. The application of precision medicine in psychiatry is still in its early phases. However, there are already examples of predictive models based on clinical data or combinations of clinical, neuroimaging and biological data. While the power of single clinical predictors would remain inadequate if analyzed only with traditional statistical approaches, these predictors are now increasingly used to impute machine learning models that can have adequate accuracy even in the presence of relatively small sample size. These models have started to be applied to disentangle relevant clinical questions that could lead to a more effective management of psychiatric disorders, such as prediction of response to the mood stabilizer lithium, resistance to antidepressants in major depressive disorder or stratification of the risk and outcome prediction in schizophrenia. In this narrative review, we summarized the most important findings in precision medicine in psychiatry based on studies that constructed machine learning models using clinical, neuroimaging and/or biological data. Limitations and barriers to the implementation of precision psychiatry in the clinical setting, as well as possible solutions and future perspectives, will be presented.

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“…More studies are emerging to develop and evaluate strategies for communicating genomic results in diverse populations. In New York City (NYC), investigators have evaluated the use of a brief educational program to improve knowledge of complex genomic concepts in a predominantly Hispanic community [ 16 , 17 ]. To extend the cultural competence of genetic counseling methods, studies have also designed and assessed the use of culturally tailored genetic counseling methods to convey unique aspects of breast cancer in African-American women [ 18 ].…”

Section: Introductionmentioning

confidence: 99%

The NYCKidSeq project: study protocol for a randomized controlled trial incorporating genomics into the clinical care of diverse New York City children

Odgis

Gallagher

Suckiel

et al. 2021

Trials

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Background Increasingly, genomics is informing clinical practice, but challenges remain for medical professionals lacking genetics expertise, and in access to and clinical utility of genomic testing for minority and underrepresented populations. The latter is a particularly pernicious problem due to the historical lack of inclusion of racially and ethnically diverse populations in genomic research and genomic medicine. A further challenge is the rapidly changing landscape of genetic tests and considerations of cost, interpretation, and diagnostic yield for emerging modalities like whole-genome sequencing. Methods The NYCKidSeq project is a randomized controlled trial recruiting 1130 children and young adults predominantly from Harlem and the Bronx with suspected genetic disorders in three disease categories: neurologic, cardiovascular, and immunologic. Two clinical genetic tests will be performed for each participant, either proband, duo, or trio whole-genome sequencing (depending on sample availability) and proband targeted gene panels. Clinical utility, cost, and diagnostic yield of both testing modalities will be assessed. This study will evaluate the use of a novel, digital platform (GUÍA) to digitize the return of genomic results experience and improve participant understanding for English- and Spanish-speaking families. Surveys will collect data at three study visits: baseline (0 months), result disclosure visit (ROR1, + 3 months), and follow-up visit (ROR2, + 9 months). Outcomes will assess parental understanding of and attitudes toward receiving genomic results for their child and behavioral, psychological, and social impact of results. We will also conduct a pilot study to assess a digital tool called GenomeDiver designed to enhance communication between clinicians and genetic testing labs. We will evaluate GenomeDiver’s ability to increase the diagnostic yield compared to standard practices, improve clinician’s ability to perform targeted reverse phenotyping, and increase the efficiency of genetic testing lab personnel. Discussion The NYCKidSeq project will contribute to the innovations and best practices in communicating genomic test results to diverse populations. This work will inform strategies for implementing genomic medicine in health systems serving diverse populations using methods that are clinically useful, technologically savvy, culturally sensitive, and ethically sound. Trial registration ClinicalTrials.govNCT03738098. Registered on November 13, 2018 Trial Sponsor: Icahn School of Medicine at Mount Sinai Contact Name: Eimear Kenny, PhD (Principal Investigator) Address: Icahn School of Medicine at Mount Sinai, One Gustave L. Levy Pl., Box 1003, New York, NY 10029 Email: eimear.kenny@mssm.edu

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Community education to enhance the more equitable use of precision medicine in Northern Manhattan

Cited by 12 publications

References 30 publications

Barriers and facilitators of germline genetic evaluation for prostate cancer

Barriers and facilitators of germline genetic evaluation for prostate cancer

<p>Challenges and Future Prospects of Precision Medicine in Psychiatry</p>

The NYCKidSeq project: study protocol for a randomized controlled trial incorporating genomics into the clinical care of diverse New York City children

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