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What makes a good life: using theatrical performance to enhance communication about polygenic risk scores research in patient and public involvement

The aim of this patient and public involvement and engagement (PPIE) work was to explore improvised theatre as a tool for facilitating bi-directional dialogue between researchers and patients/members of the public on the topic of polygenic risk scores (PRS) use within primary or secondary care. PRS...

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Autores principales: Mason, Amy M., Obi, Ifunanya, Ayodele, Olamide, Lambert, Samuel A., Fahle, Sarah
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Berlin Heidelberg 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10576689/
https://www.ncbi.nlm.nih.gov/pubmed/36763324
http://dx.doi.org/10.1007/s12687-023-00635-1
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author Mason, Amy M.
Obi, Ifunanya
Ayodele, Olamide
Lambert, Samuel A.
Fahle, Sarah
author_facet Mason, Amy M.
Obi, Ifunanya
Ayodele, Olamide
Lambert, Samuel A.
Fahle, Sarah
author_sort Mason, Amy M.
collection PubMed
description The aim of this patient and public involvement and engagement (PPIE) work was to explore improvised theatre as a tool for facilitating bi-directional dialogue between researchers and patients/members of the public on the topic of polygenic risk scores (PRS) use within primary or secondary care. PRS are a tool to quantify genetic risk for a heritable disease or trait and may be used to predict future health outcomes. In the United Kingdom (UK), they are often cited as a next-in-line public health tool to be implemented, and their use in consumer genetic testing as well as patient-facing settings is increasing. Despite their potential clinical utility, broader themes about how they might influence an individual’s perception of disease risk and decision-making are an active area of research; however, this has mostly been in the setting of return of results to patients. We worked with a youth theatre group and patients involved in a PPIE group to develop two short plays about public perceptions of genetic risk information that could be captured by PRS. These plays were shared in a workshop with patients/members of the public to facilitate discussions about PRS and their perceived benefits, concerns and emotional reactions. Discussions with both performers and patients/public raised three key questions: (1) can the data be trusted?; (2) does knowing genetic risk actually help the patient?; and (3) what makes a life worthwhile? Creating and watching fictional narratives helped all participants explore the potential use of PRS in a clinical setting, informing future research considerations and improving communication between the researchers and lay members of the PPIE group. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s12687-023-00635-1.
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spelling pubmed-105766892023-10-16 What makes a good life: using theatrical performance to enhance communication about polygenic risk scores research in patient and public involvement Mason, Amy M. Obi, Ifunanya Ayodele, Olamide Lambert, Samuel A. Fahle, Sarah J Community Genet Research The aim of this patient and public involvement and engagement (PPIE) work was to explore improvised theatre as a tool for facilitating bi-directional dialogue between researchers and patients/members of the public on the topic of polygenic risk scores (PRS) use within primary or secondary care. PRS are a tool to quantify genetic risk for a heritable disease or trait and may be used to predict future health outcomes. In the United Kingdom (UK), they are often cited as a next-in-line public health tool to be implemented, and their use in consumer genetic testing as well as patient-facing settings is increasing. Despite their potential clinical utility, broader themes about how they might influence an individual’s perception of disease risk and decision-making are an active area of research; however, this has mostly been in the setting of return of results to patients. We worked with a youth theatre group and patients involved in a PPIE group to develop two short plays about public perceptions of genetic risk information that could be captured by PRS. These plays were shared in a workshop with patients/members of the public to facilitate discussions about PRS and their perceived benefits, concerns and emotional reactions. Discussions with both performers and patients/public raised three key questions: (1) can the data be trusted?; (2) does knowing genetic risk actually help the patient?; and (3) what makes a life worthwhile? Creating and watching fictional narratives helped all participants explore the potential use of PRS in a clinical setting, informing future research considerations and improving communication between the researchers and lay members of the PPIE group. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s12687-023-00635-1. Springer Berlin Heidelberg 2023-02-10 2023-10 /pmc/articles/PMC10576689/ /pubmed/36763324 http://dx.doi.org/10.1007/s12687-023-00635-1 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) .
spellingShingle Research
Mason, Amy M.
Obi, Ifunanya
Ayodele, Olamide
Lambert, Samuel A.
Fahle, Sarah
What makes a good life: using theatrical performance to enhance communication about polygenic risk scores research in patient and public involvement
title What makes a good life: using theatrical performance to enhance communication about polygenic risk scores research in patient and public involvement
title_full What makes a good life: using theatrical performance to enhance communication about polygenic risk scores research in patient and public involvement
title_fullStr What makes a good life: using theatrical performance to enhance communication about polygenic risk scores research in patient and public involvement
title_full_unstemmed What makes a good life: using theatrical performance to enhance communication about polygenic risk scores research in patient and public involvement
title_short What makes a good life: using theatrical performance to enhance communication about polygenic risk scores research in patient and public involvement
title_sort what makes a good life: using theatrical performance to enhance communication about polygenic risk scores research in patient and public involvement
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10576689/
https://www.ncbi.nlm.nih.gov/pubmed/36763324
http://dx.doi.org/10.1007/s12687-023-00635-1
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