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Promoting patient engagement in cancer genomics research programs: An environmental scan
Background: A national priority in the United States is to promote patient engagement in cancer genomics research, especially among diverse and understudied populations. Several cancer genomics research programs have emerged to accomplish this priority, yet questions remain about the meaning and met...
Autores principales: | , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Frontiers Media S.A.
2023
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9889863/ https://www.ncbi.nlm.nih.gov/pubmed/36741312 http://dx.doi.org/10.3389/fgene.2023.1053613 |
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author | Schuster, Anne L. R. Crossnohere, Norah L. Paskett, Jonathan Thomas, Neena Hampel, Heather Ma, Qin Tiner, Jessica C. Paskett, Electra D. Bridges, John F. P. |
author_facet | Schuster, Anne L. R. Crossnohere, Norah L. Paskett, Jonathan Thomas, Neena Hampel, Heather Ma, Qin Tiner, Jessica C. Paskett, Electra D. Bridges, John F. P. |
author_sort | Schuster, Anne L. R. |
collection | PubMed |
description | Background: A national priority in the United States is to promote patient engagement in cancer genomics research, especially among diverse and understudied populations. Several cancer genomics research programs have emerged to accomplish this priority, yet questions remain about the meaning and methods of patient engagement. This study explored how cancer genomics research programs define engagement and what strategies they use to engage patients across stages in the conduct of research. Methods: An environmental scan was conducted of cancer genomics research programs focused on patient engagement. Research programs were identified and characterized using materials identified from publicly available sources (e.g., websites), a targeted literature review, and interviews with key informants. Descriptive information about the programs and their definitions of engagement, were synthesized using thematic analysis. The engagement strategies were synthesized and mapped to different stages in the conduct of research, including recruitment, consent, data collection, sharing results, and retention. Results: Ten research programs were identified, examples of which include the Cancer Moonshot Biobank, the MyPART Network, NCI-CONNECT, and the Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network. All programs aimed to include understudied or underrepresented populations. Based on publicly available information, four programs explicitly defined engagement. These definitions similarly characterized engagement as being interpersonal, reciprocal, and continuous. Five general strategies of engagement were identified across the programs: 1) digital (such as websites) and 2) non-digital communications (such as radio broadcasts, or printed brochures); 3) partnering with community organizations; 4) providing incentives; and 5) affiliating with non-academic medical centers. Digital communications were the only strategy used across all stages of the conduct of research. Programs tailored these strategies to their study goals, including overcoming barriers to research participation among diverse populations. Conclusion: Programs studying cancer genomics are deeply committed to increasing research participation among diverse populations through patient engagement. Yet, the field needs to reach a consensus on the meaning of patient engagement, develop a taxonomy of patient engagement measures in cancer genomics research, and identify optimal strategies to engage patients in cancer genomics. Addressing these needs could enable patient engagement to fulfill its potential and accelerate the pace of cancer genomic discoveries. |
format | Online Article Text |
id | pubmed-9889863 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | Frontiers Media S.A. |
record_format | MEDLINE/PubMed |
spelling | pubmed-98898632023-02-02 Promoting patient engagement in cancer genomics research programs: An environmental scan Schuster, Anne L. R. Crossnohere, Norah L. Paskett, Jonathan Thomas, Neena Hampel, Heather Ma, Qin Tiner, Jessica C. Paskett, Electra D. Bridges, John F. P. Front Genet Genetics Background: A national priority in the United States is to promote patient engagement in cancer genomics research, especially among diverse and understudied populations. Several cancer genomics research programs have emerged to accomplish this priority, yet questions remain about the meaning and methods of patient engagement. This study explored how cancer genomics research programs define engagement and what strategies they use to engage patients across stages in the conduct of research. Methods: An environmental scan was conducted of cancer genomics research programs focused on patient engagement. Research programs were identified and characterized using materials identified from publicly available sources (e.g., websites), a targeted literature review, and interviews with key informants. Descriptive information about the programs and their definitions of engagement, were synthesized using thematic analysis. The engagement strategies were synthesized and mapped to different stages in the conduct of research, including recruitment, consent, data collection, sharing results, and retention. Results: Ten research programs were identified, examples of which include the Cancer Moonshot Biobank, the MyPART Network, NCI-CONNECT, and the Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network. All programs aimed to include understudied or underrepresented populations. Based on publicly available information, four programs explicitly defined engagement. These definitions similarly characterized engagement as being interpersonal, reciprocal, and continuous. Five general strategies of engagement were identified across the programs: 1) digital (such as websites) and 2) non-digital communications (such as radio broadcasts, or printed brochures); 3) partnering with community organizations; 4) providing incentives; and 5) affiliating with non-academic medical centers. Digital communications were the only strategy used across all stages of the conduct of research. Programs tailored these strategies to their study goals, including overcoming barriers to research participation among diverse populations. Conclusion: Programs studying cancer genomics are deeply committed to increasing research participation among diverse populations through patient engagement. Yet, the field needs to reach a consensus on the meaning of patient engagement, develop a taxonomy of patient engagement measures in cancer genomics research, and identify optimal strategies to engage patients in cancer genomics. Addressing these needs could enable patient engagement to fulfill its potential and accelerate the pace of cancer genomic discoveries. Frontiers Media S.A. 2023-01-18 /pmc/articles/PMC9889863/ /pubmed/36741312 http://dx.doi.org/10.3389/fgene.2023.1053613 Text en Copyright © 2023 Schuster, Crossnohere, Paskett, Thomas, Hampel, Ma, Tiner, Paskett and Bridges. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms. |
spellingShingle | Genetics Schuster, Anne L. R. Crossnohere, Norah L. Paskett, Jonathan Thomas, Neena Hampel, Heather Ma, Qin Tiner, Jessica C. Paskett, Electra D. Bridges, John F. P. Promoting patient engagement in cancer genomics research programs: An environmental scan |
title | Promoting patient engagement in cancer genomics research programs: An environmental scan |
title_full | Promoting patient engagement in cancer genomics research programs: An environmental scan |
title_fullStr | Promoting patient engagement in cancer genomics research programs: An environmental scan |
title_full_unstemmed | Promoting patient engagement in cancer genomics research programs: An environmental scan |
title_short | Promoting patient engagement in cancer genomics research programs: An environmental scan |
title_sort | promoting patient engagement in cancer genomics research programs: an environmental scan |
topic | Genetics |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9889863/ https://www.ncbi.nlm.nih.gov/pubmed/36741312 http://dx.doi.org/10.3389/fgene.2023.1053613 |
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