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Albertans for Health Research Network: Form, Fit, and Function

The patient engagement (PE) platform staff of Alberta Strategy for Patient Oriented Research Support for People and Patient Oriented Research Trials Unit developed a patient-powered PE network called Albertans for Health Research Network (AB4HR); an enhanced tool to better connect patient partners a...

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Autores principales: Rasiah, Jananee, Manafò, Elizabeth, Krawec, Kiara, Nielssen, Ingrid, Amirav, Israel, Macphail, Emily CM, Lavigne, Lise-Anne, Asis, Sheila
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7786747/
https://www.ncbi.nlm.nih.gov/pubmed/33457531
http://dx.doi.org/10.1177/2374373520925245
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author Rasiah, Jananee
Manafò, Elizabeth
Krawec, Kiara
Nielssen, Ingrid
Amirav, Israel
Macphail, Emily CM
Lavigne, Lise-Anne
Asis, Sheila
author_facet Rasiah, Jananee
Manafò, Elizabeth
Krawec, Kiara
Nielssen, Ingrid
Amirav, Israel
Macphail, Emily CM
Lavigne, Lise-Anne
Asis, Sheila
author_sort Rasiah, Jananee
collection PubMed
description The patient engagement (PE) platform staff of Alberta Strategy for Patient Oriented Research Support for People and Patient Oriented Research Trials Unit developed a patient-powered PE network called Albertans for Health Research Network (AB4HR); an enhanced tool to better connect patient partners and researchers online. AB4HR was developed in response to an identified need—a user-friendly online forum for both patient partners and researchers to access, so that they can better work together, as partners, in health research. We codesigned AB4HR and identified ways to improve the form, fit, and function of an existing registry through discussion groups with patient partners and researchers. We found 3 main themes derived from the perspective shared by patient partners and researchers. Patient partners and researchers agreed that the existing registry provides a forum to connect with one another in an easy, low-barrier way. However, there were opportunities for improvement with AB4HR, including possibilities for greater interaction between patient partners and researchers to promote more collaborative partnerships.
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spelling pubmed-77867472021-01-14 Albertans for Health Research Network: Form, Fit, and Function Rasiah, Jananee Manafò, Elizabeth Krawec, Kiara Nielssen, Ingrid Amirav, Israel Macphail, Emily CM Lavigne, Lise-Anne Asis, Sheila J Patient Exp Case Studies The patient engagement (PE) platform staff of Alberta Strategy for Patient Oriented Research Support for People and Patient Oriented Research Trials Unit developed a patient-powered PE network called Albertans for Health Research Network (AB4HR); an enhanced tool to better connect patient partners and researchers online. AB4HR was developed in response to an identified need—a user-friendly online forum for both patient partners and researchers to access, so that they can better work together, as partners, in health research. We codesigned AB4HR and identified ways to improve the form, fit, and function of an existing registry through discussion groups with patient partners and researchers. We found 3 main themes derived from the perspective shared by patient partners and researchers. Patient partners and researchers agreed that the existing registry provides a forum to connect with one another in an easy, low-barrier way. However, there were opportunities for improvement with AB4HR, including possibilities for greater interaction between patient partners and researchers to promote more collaborative partnerships. SAGE Publications 2020-06-29 2020-12 /pmc/articles/PMC7786747/ /pubmed/33457531 http://dx.doi.org/10.1177/2374373520925245 Text en © The Author(s) 2020 https://creativecommons.org/licenses/by-nc/4.0/ This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Case Studies
Rasiah, Jananee
Manafò, Elizabeth
Krawec, Kiara
Nielssen, Ingrid
Amirav, Israel
Macphail, Emily CM
Lavigne, Lise-Anne
Asis, Sheila
Albertans for Health Research Network: Form, Fit, and Function
title Albertans for Health Research Network: Form, Fit, and Function
title_full Albertans for Health Research Network: Form, Fit, and Function
title_fullStr Albertans for Health Research Network: Form, Fit, and Function
title_full_unstemmed Albertans for Health Research Network: Form, Fit, and Function
title_short Albertans for Health Research Network: Form, Fit, and Function
title_sort albertans for health research network: form, fit, and function
topic Case Studies
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7786747/
https://www.ncbi.nlm.nih.gov/pubmed/33457531
http://dx.doi.org/10.1177/2374373520925245
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