Patient partner compensation in research and health care: the patient perspective on why and how

As patient and family engagement activity broadens across the continuum of care and expands around the world, the question of compensation for an increasingly competent advisory community continues to come up. The authors are 4 patients who are highly active in patient and public involvement initiat...

Descripción completa

Guardado en:
Detalles Bibliográficos
Autores principales: Dawn Richards, Isabel Jordan, Kimberly Strain, Zal Press
Formato: article
Lenguaje:EN
Publicado: The Beryl Institute 2018
Materias:
Acceso en línea:https://doaj.org/article/780eeb7c70534e628472e81f6fcc9f7a
Etiquetas: Agregar Etiqueta
Sin Etiquetas, Sea el primero en etiquetar este registro!
id oai:doaj.org-article:780eeb7c70534e628472e81f6fcc9f7a
record_format dspace
spelling oai:doaj.org-article:780eeb7c70534e628472e81f6fcc9f7a2021-11-15T04:25:59ZPatient partner compensation in research and health care: the patient perspective on why and how2372-0247https://doaj.org/article/780eeb7c70534e628472e81f6fcc9f7a2018-11-01T00:00:00Zhttps://pxjournal.org/journal/vol5/iss3/2https://doaj.org/toc/2372-0247As patient and family engagement activity broadens across the continuum of care and expands around the world, the question of compensation for an increasingly competent advisory community continues to come up. The authors are 4 patients who are highly active in patient and public involvement initiatives internationally. Through our exclusive patient perspective, we provide insight into the reasoning and motivation that many patients are now awakening to as to why lived experience is a value that organizations need to recognize and support in concrete ways. We explore the core principles that an organization needs to consider and adopt when developing compensation policies for their engagement practices with patients and family members. Organizations face an ongoing challenge to achieve diversity among their patient advisors so that all segments of the community they serve are represented. In particular, marginalized populations are confronted with financial and social determinants that are often barriers to full inclusion. Comprehensive compensation policies overcome these barriers. While there is some guidance available from organizations like PCORI, the predominant culture in health care resists the notion of compensation. In addition to defining core principles behind compensation, we outline how to put those principles into practice in a valid, credible manner that honours and values the contributions of patients and families whether in quality improvement or health research. <strong>Experience Framework</strong> This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework. (<a href="http://bit.ly/ExperienceFramework" target="_blank">http://bit.ly/ExperienceFramework</a>) <ul> <li><a href="https://www.theberylinstitute.org/page/PXSEARCH#resource-list-all/?view_28_page=1&view_28_filters=%5B%7B%22field%22%3A%22field_38%22%2C%22operator%22%3A%22in%22%2C%22value%22%3A%5B%22PXJ%20Article%22%5D%7D%2C%7B%22field%22%3A%22field_20%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%2C%7B%22field%22%3A%22field_40%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%2C%22Patient%2C%20Family%20%26%20Community%20Engagement%22%5D%7D%2C%7B%22field%22%3A%22field_41%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%5D" target="_blank">Access other PXJ articles</a> related to this lens.</li> <li><a href="https://www.theberylinstitute.org/page/Ecosystem-PatientFamilyCommunityEngagement" target="_blank">Access other resources</a> related to this lens.</li> </ul>Dawn RichardsIsabel JordanKimberly StrainZal PressThe Beryl Institutearticlepatient engagementpatient compensationpatient partnerpatient advisorhealth researchpatient and public involvementMedicine (General)R5-920Public aspects of medicineRA1-1270ENPatient Experience Journal (2018)
institution DOAJ
collection DOAJ
language EN
topic patient engagement
patient compensation
patient partner
patient advisor
health research
patient and public involvement
Medicine (General)
R5-920
Public aspects of medicine
RA1-1270
spellingShingle patient engagement
patient compensation
patient partner
patient advisor
health research
patient and public involvement
Medicine (General)
R5-920
Public aspects of medicine
RA1-1270
Dawn Richards
Isabel Jordan
Kimberly Strain
Zal Press
Patient partner compensation in research and health care: the patient perspective on why and how
description As patient and family engagement activity broadens across the continuum of care and expands around the world, the question of compensation for an increasingly competent advisory community continues to come up. The authors are 4 patients who are highly active in patient and public involvement initiatives internationally. Through our exclusive patient perspective, we provide insight into the reasoning and motivation that many patients are now awakening to as to why lived experience is a value that organizations need to recognize and support in concrete ways. We explore the core principles that an organization needs to consider and adopt when developing compensation policies for their engagement practices with patients and family members. Organizations face an ongoing challenge to achieve diversity among their patient advisors so that all segments of the community they serve are represented. In particular, marginalized populations are confronted with financial and social determinants that are often barriers to full inclusion. Comprehensive compensation policies overcome these barriers. While there is some guidance available from organizations like PCORI, the predominant culture in health care resists the notion of compensation. In addition to defining core principles behind compensation, we outline how to put those principles into practice in a valid, credible manner that honours and values the contributions of patients and families whether in quality improvement or health research. <strong>Experience Framework</strong> This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework. (<a href="http://bit.ly/ExperienceFramework" target="_blank">http://bit.ly/ExperienceFramework</a>) <ul> <li><a href="https://www.theberylinstitute.org/page/PXSEARCH#resource-list-all/?view_28_page=1&view_28_filters=%5B%7B%22field%22%3A%22field_38%22%2C%22operator%22%3A%22in%22%2C%22value%22%3A%5B%22PXJ%20Article%22%5D%7D%2C%7B%22field%22%3A%22field_20%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%2C%7B%22field%22%3A%22field_40%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%2C%22Patient%2C%20Family%20%26%20Community%20Engagement%22%5D%7D%2C%7B%22field%22%3A%22field_41%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%5D" target="_blank">Access other PXJ articles</a> related to this lens.</li> <li><a href="https://www.theberylinstitute.org/page/Ecosystem-PatientFamilyCommunityEngagement" target="_blank">Access other resources</a> related to this lens.</li> </ul>
format article
author Dawn Richards
Isabel Jordan
Kimberly Strain
Zal Press
author_facet Dawn Richards
Isabel Jordan
Kimberly Strain
Zal Press
author_sort Dawn Richards
title Patient partner compensation in research and health care: the patient perspective on why and how
title_short Patient partner compensation in research and health care: the patient perspective on why and how
title_full Patient partner compensation in research and health care: the patient perspective on why and how
title_fullStr Patient partner compensation in research and health care: the patient perspective on why and how
title_full_unstemmed Patient partner compensation in research and health care: the patient perspective on why and how
title_sort patient partner compensation in research and health care: the patient perspective on why and how
publisher The Beryl Institute
publishDate 2018
url https://doaj.org/article/780eeb7c70534e628472e81f6fcc9f7a
work_keys_str_mv AT dawnrichards patientpartnercompensationinresearchandhealthcarethepatientperspectiveonwhyandhow
AT isabeljordan patientpartnercompensationinresearchandhealthcarethepatientperspectiveonwhyandhow
AT kimberlystrain patientpartnercompensationinresearchandhealthcarethepatientperspectiveonwhyandhow
AT zalpress patientpartnercompensationinresearchandhealthcarethepatientperspectiveonwhyandhow
_version_ 1718428873337602048