Quality of patient, family, caregiver and public engagement in decision-making in healthcare systems: a scoping review protocol

Introduction To advance person- and family-centred healthcare, government initiatives have supported the engagement of patients and family caregivers in decision-making in healthcare systems. There is, however, no consensus on how to define success for such initiatives. This scoping review aims to i...

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Main Authors: Linda C Li, Clayon Hamilton, M Elizabeth Snow, Nancy Clark, Shannon Gibson, Maryam Dehnadi, Michelle Lui, Andrew Koster, Janet McLean
Format: Article
Language:English
Published: BMJ Publishing Group 2019-11-01
Series:BMJ Open
Online Access:https://bmjopen.bmj.com/content/9/11/e032788.full
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author Linda C Li
Clayon Hamilton
M Elizabeth Snow
Nancy Clark
Shannon Gibson
Maryam Dehnadi
Michelle Lui
Andrew Koster
Janet McLean
author_facet Linda C Li
Clayon Hamilton
M Elizabeth Snow
Nancy Clark
Shannon Gibson
Maryam Dehnadi
Michelle Lui
Andrew Koster
Janet McLean
author_sort Linda C Li
collection DOAJ
description Introduction To advance person- and family-centred healthcare, government initiatives have supported the engagement of patients and family caregivers in decision-making in healthcare systems. There is, however, no consensus on how to define success for such initiatives. This scoping review aims to identify the key elements for defining the quality of patient and family caregiver engagement in decision-making across the engagement domains (individual, community/organisation, system) of British Columbia’s healthcare system. We will use those elements to develop a conceptual evaluation framework.Methods and analysis This scoping review follows Arskey and O’Malley’s methodology. (1) The research question was identified through team discussions. (2) Articles for data source will be identified using a librarian-informed search strategy for seven bibliographic databases as well as grey literature sources. (3) Selected articles will be relevant to the evaluation of patient and family caregiver engagement in healthcare systems. (4) Two researchers will independently extract data into predefined and emerging categories. (5) The researchers will reconcile and organise the identified elements. The research team’s collective perspective will then refine the elements, and select, interpret and summarise the results. (6) Persons from key stakeholder groups will be consulted to refine the emergent conceptual framework.Ethics and dissemination We will seek ethics approval for the stakeholder consultation. This study follows an integrated knowledge translation approach. The results will inform evaluation of the Patients as Partners Initiative of the British Columbia Ministry of Health, and will be disseminated as a scientific article, a research brief, and presentations at conferences and stakeholder meetings.
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spelling doaj-art-e64daf8287d24f9baf0ae3abf09aa2002025-08-20T02:49:08ZengBMJ Publishing GroupBMJ Open2044-60552019-11-0191110.1136/bmjopen-2019-032788Quality of patient, family, caregiver and public engagement in decision-making in healthcare systems: a scoping review protocolLinda C Li0Clayon Hamilton1M Elizabeth Snow2Nancy Clark3Shannon Gibson4Maryam Dehnadi5Michelle Lui6Andrew Koster7Janet McLean8Arthritis Research Canada, Richmond, British Columbia, Canada1 Long‐Term Care and Assisted Living, Fraser Health Authority, Surrey, British Columbia, CanadaFaculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, CanadaSchool of Nursing, University of Victoria, Victoria, British Columbia, CanadaPrimary Care Division, British Columbia Ministry of Health, Victoria, British Columbia, CanadaFaculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, CanadaArthritis Research Canada, Vancouver, British Columbia, CanadaPatient partner, Victoria, British Columbia, CanadaFamily Caregivers of British Columbia, Victoria, British Columbia, CanadaIntroduction To advance person- and family-centred healthcare, government initiatives have supported the engagement of patients and family caregivers in decision-making in healthcare systems. There is, however, no consensus on how to define success for such initiatives. This scoping review aims to identify the key elements for defining the quality of patient and family caregiver engagement in decision-making across the engagement domains (individual, community/organisation, system) of British Columbia’s healthcare system. We will use those elements to develop a conceptual evaluation framework.Methods and analysis This scoping review follows Arskey and O’Malley’s methodology. (1) The research question was identified through team discussions. (2) Articles for data source will be identified using a librarian-informed search strategy for seven bibliographic databases as well as grey literature sources. (3) Selected articles will be relevant to the evaluation of patient and family caregiver engagement in healthcare systems. (4) Two researchers will independently extract data into predefined and emerging categories. (5) The researchers will reconcile and organise the identified elements. The research team’s collective perspective will then refine the elements, and select, interpret and summarise the results. (6) Persons from key stakeholder groups will be consulted to refine the emergent conceptual framework.Ethics and dissemination We will seek ethics approval for the stakeholder consultation. This study follows an integrated knowledge translation approach. The results will inform evaluation of the Patients as Partners Initiative of the British Columbia Ministry of Health, and will be disseminated as a scientific article, a research brief, and presentations at conferences and stakeholder meetings.https://bmjopen.bmj.com/content/9/11/e032788.full
spellingShingle Linda C Li
Clayon Hamilton
M Elizabeth Snow
Nancy Clark
Shannon Gibson
Maryam Dehnadi
Michelle Lui
Andrew Koster
Janet McLean
Quality of patient, family, caregiver and public engagement in decision-making in healthcare systems: a scoping review protocol
BMJ Open
title Quality of patient, family, caregiver and public engagement in decision-making in healthcare systems: a scoping review protocol
title_full Quality of patient, family, caregiver and public engagement in decision-making in healthcare systems: a scoping review protocol
title_fullStr Quality of patient, family, caregiver and public engagement in decision-making in healthcare systems: a scoping review protocol
title_full_unstemmed Quality of patient, family, caregiver and public engagement in decision-making in healthcare systems: a scoping review protocol
title_short Quality of patient, family, caregiver and public engagement in decision-making in healthcare systems: a scoping review protocol
title_sort quality of patient family caregiver and public engagement in decision making in healthcare systems a scoping review protocol
url https://bmjopen.bmj.com/content/9/11/e032788.full
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