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An Idealized Clinicogenomic Registry to Engage Underrepresented Populations Using Innovative Technology
Current best practices in tumor registries provide a glimpse into a limited time frame over the natural history of disease, usually a narrow window around diagnosis and biopsy. This creates challenges meeting public health and healthcare reimbursement policies that increasingly require robust docume...
Autores principales: | , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
MDPI
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9144063/ https://www.ncbi.nlm.nih.gov/pubmed/35629136 http://dx.doi.org/10.3390/jpm12050713 |
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author | Silva, Patrick Dahlke, Deborah Vollmer Smith, Matthew Lee Charles, Wendy Gomez, Jorge Ory, Marcia G. Ramos, Kenneth S. |
author_facet | Silva, Patrick Dahlke, Deborah Vollmer Smith, Matthew Lee Charles, Wendy Gomez, Jorge Ory, Marcia G. Ramos, Kenneth S. |
author_sort | Silva, Patrick |
collection | PubMed |
description | Current best practices in tumor registries provide a glimpse into a limited time frame over the natural history of disease, usually a narrow window around diagnosis and biopsy. This creates challenges meeting public health and healthcare reimbursement policies that increasingly require robust documentation of long-term clinical trajectories, quality of life, and health economics outcomes. These challenges are amplified for underrepresented minority (URM) and other disadvantaged populations, who tend to view the institution of clinical research with skepticism. Participation gaps leave such populations underrepresented in clinical research and, importantly, in policy decisions about treatment choices and reimbursement, thus further augmenting health, social, and economic disparities. Cloud computing, mobile computing, digital ledgers, tokenization, and artificial intelligence technologies are powerful tools that promise to enhance longitudinal patient engagement across the natural history of disease. These tools also promise to enhance engagement by giving participants agency over their data and addressing a major impediment to research participation. This will only occur if these tools are available for use with all patients. Distributed ledger technologies (specifically blockchain) converge these tools and offer a significant element of trust that can be used to engage URM populations more substantively in clinical research. This is a crucial step toward linking composite cohorts for training and optimization of the artificial intelligence tools for enhancing public health in the future. The parameters of an idealized clinical genomic registry are presented. |
format | Online Article Text |
id | pubmed-9144063 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | MDPI |
record_format | MEDLINE/PubMed |
spelling | pubmed-91440632022-05-29 An Idealized Clinicogenomic Registry to Engage Underrepresented Populations Using Innovative Technology Silva, Patrick Dahlke, Deborah Vollmer Smith, Matthew Lee Charles, Wendy Gomez, Jorge Ory, Marcia G. Ramos, Kenneth S. J Pers Med Article Current best practices in tumor registries provide a glimpse into a limited time frame over the natural history of disease, usually a narrow window around diagnosis and biopsy. This creates challenges meeting public health and healthcare reimbursement policies that increasingly require robust documentation of long-term clinical trajectories, quality of life, and health economics outcomes. These challenges are amplified for underrepresented minority (URM) and other disadvantaged populations, who tend to view the institution of clinical research with skepticism. Participation gaps leave such populations underrepresented in clinical research and, importantly, in policy decisions about treatment choices and reimbursement, thus further augmenting health, social, and economic disparities. Cloud computing, mobile computing, digital ledgers, tokenization, and artificial intelligence technologies are powerful tools that promise to enhance longitudinal patient engagement across the natural history of disease. These tools also promise to enhance engagement by giving participants agency over their data and addressing a major impediment to research participation. This will only occur if these tools are available for use with all patients. Distributed ledger technologies (specifically blockchain) converge these tools and offer a significant element of trust that can be used to engage URM populations more substantively in clinical research. This is a crucial step toward linking composite cohorts for training and optimization of the artificial intelligence tools for enhancing public health in the future. The parameters of an idealized clinical genomic registry are presented. MDPI 2022-04-29 /pmc/articles/PMC9144063/ /pubmed/35629136 http://dx.doi.org/10.3390/jpm12050713 Text en © 2022 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/). |
spellingShingle | Article Silva, Patrick Dahlke, Deborah Vollmer Smith, Matthew Lee Charles, Wendy Gomez, Jorge Ory, Marcia G. Ramos, Kenneth S. An Idealized Clinicogenomic Registry to Engage Underrepresented Populations Using Innovative Technology |
title | An Idealized Clinicogenomic Registry to Engage Underrepresented Populations Using Innovative Technology |
title_full | An Idealized Clinicogenomic Registry to Engage Underrepresented Populations Using Innovative Technology |
title_fullStr | An Idealized Clinicogenomic Registry to Engage Underrepresented Populations Using Innovative Technology |
title_full_unstemmed | An Idealized Clinicogenomic Registry to Engage Underrepresented Populations Using Innovative Technology |
title_short | An Idealized Clinicogenomic Registry to Engage Underrepresented Populations Using Innovative Technology |
title_sort | idealized clinicogenomic registry to engage underrepresented populations using innovative technology |
topic | Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9144063/ https://www.ncbi.nlm.nih.gov/pubmed/35629136 http://dx.doi.org/10.3390/jpm12050713 |
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