Understanding patient engagement in health system decision-making: a co-designed scoping review

<h3>Background</h3><p dir="ltr">With healthcare striving to shift to a more person-centered delivery model, patient and family involvement must have a bigger role in shaping this. While many initiatives involving patients and family members focus on self-care, a broader u...

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التفاصيل البيبلوغرافية
المؤلف الرئيسي: Tamara L. McCarron (10779034) (author)
مؤلفون آخرون: Karen Moffat (7539140) (author), Gloria Wilkinson (7539143) (author), Sandra Zelinsky (7539146) (author), Jamie M. Boyd (12416642) (author), Deborah White (3523247) (author), Derek Hassay (7539149) (author), Diane L. Lorenzetti (11497365) (author), Nancy J. Marlett (18805948) (author), Thomas Noseworthy (5437328) (author)
منشور في: 2019
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author Tamara L. McCarron (10779034)
author2 Karen Moffat (7539140)
Gloria Wilkinson (7539143)
Sandra Zelinsky (7539146)
Jamie M. Boyd (12416642)
Deborah White (3523247)
Derek Hassay (7539149)
Diane L. Lorenzetti (11497365)
Nancy J. Marlett (18805948)
Thomas Noseworthy (5437328)
author2_role author
author
author
author
author
author
author
author
author
author_facet Tamara L. McCarron (10779034)
Karen Moffat (7539140)
Gloria Wilkinson (7539143)
Sandra Zelinsky (7539146)
Jamie M. Boyd (12416642)
Deborah White (3523247)
Derek Hassay (7539149)
Diane L. Lorenzetti (11497365)
Nancy J. Marlett (18805948)
Thomas Noseworthy (5437328)
author_role author
dc.creator.none.fl_str_mv Tamara L. McCarron (10779034)
Karen Moffat (7539140)
Gloria Wilkinson (7539143)
Sandra Zelinsky (7539146)
Jamie M. Boyd (12416642)
Deborah White (3523247)
Derek Hassay (7539149)
Diane L. Lorenzetti (11497365)
Nancy J. Marlett (18805948)
Thomas Noseworthy (5437328)
dc.date.none.fl_str_mv 2019-04-01T00:00:00Z
dc.identifier.none.fl_str_mv 10.1186/s13643-019-0994-8
dc.relation.none.fl_str_mv https://figshare.com/articles/journal_contribution/Understanding_patient_engagement_in_health_system_decision-making_a_co-designed_scoping_review/26015866
dc.rights.none.fl_str_mv CC BY 4.0
info:eu-repo/semantics/openAccess
dc.subject.none.fl_str_mv Health sciences
Health services and systems
Nursing
Human society
Policy and administration
Patients
Capacity building
Patient participation
Patient-centered
Decision-making
dc.title.none.fl_str_mv Understanding patient engagement in health system decision-making: a co-designed scoping review
dc.type.none.fl_str_mv Text
Journal contribution
info:eu-repo/semantics/publishedVersion
text
contribution to journal
description <h3>Background</h3><p dir="ltr">With healthcare striving to shift to a more person-centered delivery model, patient and family involvement must have a bigger role in shaping this. While many initiatives involving patients and family members focus on self-care, a broader understanding of patient participation is necessary. Ensuring a viable and sustainable critical number of qualified patients and family members to support this shift will be of utmost importance. The purpose of this study was to understand how health systems are intentionally investing in the training and skill development of patients and family members.</p><h3>Methods</h3><p dir="ltr">Patient co-investigators and researchers conducted a scoping review of the existing literature on methods adopted by healthcare systems to build the skills and capacity of patients to participate in healthcare decision-making using a recognized methodological framework. Six electronic databases were searched to identify studies. Two independent reviewers screened titles and abstracts and full-text papers for inclusion. The research team independently extracted data. Any disagreements were resolved by achieving consensus through discussion. Quantitative and qualitative content synthesis, as well as a quality assessment, was conducted.</p><h3>Results</h3><p dir="ltr">After eliminating duplicates, the search resulted in 9428 abstracts. Four hundred fifty-eight articles were reviewed and 15 articles were included. Four themes emerged: forums (33%), patient instructors (20%), workshops (33%), and co-design (13%). Four of the identified studies measured the impact and overall effectiveness of the respective programs. Examples of how patient and family members were supported (invested in) included advocacy training to support future involvement in engagement activities, a training program to conduct patient-led research, involvement in an immersive experience-based co-design initiative, and involvement in training pharmacy students. Overall, these studies found positive outcomes when patients and family members were recipients of these opportunities.</p><h3>Conclusions</h3><p dir="ltr">The results of this scoping review demonstrate that an evidence base around programs to advance patient engagement is largely absent. An opportunity exists for further research to identify strategies and measures to support patient engagement in healthcare decision-making.</p><h2>Other Information</h2><p dir="ltr">Published in: Systematic Reviews<br>License: <a href="http://creativecommons.org/licenses/by/4.0/" target="_blank">http://creativecommons.org/licenses/by/4.0/</a><br>See article on publisher's website: <a href="https://dx.doi.org/10.1186/s13643-019-0994-8" target="_blank">https://dx.doi.org/10.1186/s13643-019-0994-8</a></p>
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oai_identifier_str oai:figshare.com:article/26015866
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spelling Understanding patient engagement in health system decision-making: a co-designed scoping reviewTamara L. McCarron (10779034)Karen Moffat (7539140)Gloria Wilkinson (7539143)Sandra Zelinsky (7539146)Jamie M. Boyd (12416642)Deborah White (3523247)Derek Hassay (7539149)Diane L. Lorenzetti (11497365)Nancy J. Marlett (18805948)Thomas Noseworthy (5437328)Health sciencesHealth services and systemsNursingHuman societyPolicy and administrationPatientsCapacity buildingPatient participationPatient-centeredDecision-making<h3>Background</h3><p dir="ltr">With healthcare striving to shift to a more person-centered delivery model, patient and family involvement must have a bigger role in shaping this. While many initiatives involving patients and family members focus on self-care, a broader understanding of patient participation is necessary. Ensuring a viable and sustainable critical number of qualified patients and family members to support this shift will be of utmost importance. The purpose of this study was to understand how health systems are intentionally investing in the training and skill development of patients and family members.</p><h3>Methods</h3><p dir="ltr">Patient co-investigators and researchers conducted a scoping review of the existing literature on methods adopted by healthcare systems to build the skills and capacity of patients to participate in healthcare decision-making using a recognized methodological framework. Six electronic databases were searched to identify studies. Two independent reviewers screened titles and abstracts and full-text papers for inclusion. The research team independently extracted data. Any disagreements were resolved by achieving consensus through discussion. Quantitative and qualitative content synthesis, as well as a quality assessment, was conducted.</p><h3>Results</h3><p dir="ltr">After eliminating duplicates, the search resulted in 9428 abstracts. Four hundred fifty-eight articles were reviewed and 15 articles were included. Four themes emerged: forums (33%), patient instructors (20%), workshops (33%), and co-design (13%). Four of the identified studies measured the impact and overall effectiveness of the respective programs. Examples of how patient and family members were supported (invested in) included advocacy training to support future involvement in engagement activities, a training program to conduct patient-led research, involvement in an immersive experience-based co-design initiative, and involvement in training pharmacy students. Overall, these studies found positive outcomes when patients and family members were recipients of these opportunities.</p><h3>Conclusions</h3><p dir="ltr">The results of this scoping review demonstrate that an evidence base around programs to advance patient engagement is largely absent. An opportunity exists for further research to identify strategies and measures to support patient engagement in healthcare decision-making.</p><h2>Other Information</h2><p dir="ltr">Published in: Systematic Reviews<br>License: <a href="http://creativecommons.org/licenses/by/4.0/" target="_blank">http://creativecommons.org/licenses/by/4.0/</a><br>See article on publisher's website: <a href="https://dx.doi.org/10.1186/s13643-019-0994-8" target="_blank">https://dx.doi.org/10.1186/s13643-019-0994-8</a></p>2019-04-01T00:00:00ZTextJournal contributioninfo:eu-repo/semantics/publishedVersiontextcontribution to journal10.1186/s13643-019-0994-8https://figshare.com/articles/journal_contribution/Understanding_patient_engagement_in_health_system_decision-making_a_co-designed_scoping_review/26015866CC BY 4.0info:eu-repo/semantics/openAccessoai:figshare.com:article/260158662019-04-01T00:00:00Z
spellingShingle Understanding patient engagement in health system decision-making: a co-designed scoping review
Tamara L. McCarron (10779034)
Health sciences
Health services and systems
Nursing
Human society
Policy and administration
Patients
Capacity building
Patient participation
Patient-centered
Decision-making
status_str publishedVersion
title Understanding patient engagement in health system decision-making: a co-designed scoping review
title_full Understanding patient engagement in health system decision-making: a co-designed scoping review
title_fullStr Understanding patient engagement in health system decision-making: a co-designed scoping review
title_full_unstemmed Understanding patient engagement in health system decision-making: a co-designed scoping review
title_short Understanding patient engagement in health system decision-making: a co-designed scoping review
title_sort Understanding patient engagement in health system decision-making: a co-designed scoping review
topic Health sciences
Health services and systems
Nursing
Human society
Policy and administration
Patients
Capacity building
Patient participation
Patient-centered
Decision-making