Engaging stakeholders to level up COPD care in LMICs: lessons learned from the "Breathe Well" programme in Brazil, China, Georgia, and North Macedonia

Genevie Fernandes; Siân Williams; Peymané Adab; Nicola Gale; Corina de Jong; Jaime Correia-de-Sousa; KK Cheng; Chunhua Chi; Brendan G. Cooper; Andrew P. Dickens; Alexandra Enocson; Amanda Farley; Kate Jolly; Sue Jowett; Maka Maglakelidze; Tamaz Maghlakelidze; Sonia Martins; Alice Sitch; Aleksandra Stamenova; Katarina Stavrikj; Rafael Stelmach; Alice Turner; Zihan Pan; Hui Pang; Jianxin Zhang; Rachel E. Jordan

doi:10.1186/s12913-023-10525-4

Engaging stakeholders to level up COPD care in LMICs: lessons learned from the "Breathe Well" programme in Brazil, China, Georgia, and North Macedonia

Genevie Fernandes^*, Siân Williams, Peymané Adab, Nicola Gale, Corina de Jong, Jaime Correia-de-Sousa, KK Cheng, Chunhua Chi, Brendan G. Cooper, Andrew P. Dickens, Alexandra Enocson, Amanda Farley, Kate Jolly, Sue Jowett, Maka Maglakelidze, Tamaz Maghlakelidze, Sonia Martins, Alice Sitch, Aleksandra Stamenova, Katarina StavrikjRafael Stelmach, Alice Turner, Zihan Pan, Hui Pang, Jianxin Zhang, Rachel E. Jordan

^*Corresponding author for this work

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Abstract

BACKGROUND: Effective stakeholder engagement in health research is increasingly being recognised and promoted as an important pathway to closing the gap between knowledge production and its use in health systems. However, little is known about its process and impacts, particularly in low-and middle-income countries. This opinion piece draws on the stakeholder engagement experiences from a global health research programme on Chronic Obstructive Pulmonary Disease (COPD) led by clinician researchers in Brazil, China, Georgia and North Macedonia, and presents the process, outcomes and lessons learned.

MAIN BODY: Each country team was supported with an overarching engagement protocol and mentored to develop a tailored plan. Patient involvement in research was previously limited in all countries, requiring intensive efforts through personal communication, meetings, advisory groups and social media. Accredited training programmes were effective incentives for participation from healthcare providers; and aligning research findings with competing policy priorities enabled interest and dialogue with decision-makers. The COVID-19 pandemic severely limited possibilities for planned engagement, although remote methods were used where possible. Planned and persistent engagement contributed to shared knowledge and commitment to change, including raised patient and public awareness about COPD, improved skills and practice of healthcare providers, increased interest and support from clinical leaders, and dialogue for integrating COPD services into national policy and practice.

CONCLUSION: Stakeholder engagement enabled relevant local actors to produce and utilise knowledge for small wins such as improving day-to-day practice and for long-term goals of equitable access to COPD care. For it to be successful and sustained, stakeholder engagement needs to be valued and integrated throughout the research and knowledge generation process, complete with dedicated resources, contextualised and flexible planning, and commitment.

Original language	English
Article number	66
Number of pages	10
Journal	BMC Health Services Research
Volume	24
Issue number	1
DOIs	https://doi.org/10.1186/s12913-023-10525-4
Publication status	Published - 12 Jan 2024

Bibliographical note

Funding:
This research was funded by the National Institute for Health and Care Research (NIHR) NIHR global group on global COPD in primary care, University of Birmingham, (project reference: 16/137/95) using UK aid from the UK Government to support global health research. The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR or the UK Department of Health and Social Care.

Copyright:
© 2024. The Author(s).

Keywords

Humans
Developing Countries
Georgia
Brazil
Republic of North Macedonia
Pandemics

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10.1186/s12913-023-10525-4Licence: Creative Commons: Attribution (CC BY)

FernandesG2023Engaging Final published version, 3.02 MBLicence: Creative Commons: Attribution (CC BY)

Global-COPD group: improving the diagnosis, management and prognosis of COPD patients in low and middle income countries (OPEN FOR DISSEMINATION ONLY)
Sitch, A. (Co-Investigator), Turner, A. (Co-Investigator), Farley, A. (Co-Investigator), Jolly, K. (Co-Investigator), Jowett, S. (Co-Investigator), Cheng, K. (Co-Investigator), Jordan, R. (Principal Investigator), Adab, P. (Co-Investigator) & Gale, N. (Co-Investigator)
NIHR CENTRAL COMMISSIONING FACILITY
1/06/17 → 30/09/24
Project: Other Government Departments

Cite this

Fernandes, G., Williams, S., Adab, P., Gale, N., de Jong, C., Correia-de-Sousa, J., Cheng, KK., Chi, C., Cooper, B. G., Dickens, A. P., Enocson, A., Farley, A., Jolly, K., Jowett, S., Maglakelidze, M., Maghlakelidze, T., Martins, S., Sitch, A., Stamenova, A., ... Jordan, R. E. (2024). Engaging stakeholders to level up COPD care in LMICs: lessons learned from the "Breathe Well" programme in Brazil, China, Georgia, and North Macedonia. BMC Health Services Research, 24(1), Article 66. https://doi.org/10.1186/s12913-023-10525-4

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title = "Engaging stakeholders to level up COPD care in LMICs: lessons learned from the {"}Breathe Well{"} programme in Brazil, China, Georgia, and North Macedonia",

abstract = "BACKGROUND: Effective stakeholder engagement in health research is increasingly being recognised and promoted as an important pathway to closing the gap between knowledge production and its use in health systems. However, little is known about its process and impacts, particularly in low-and middle-income countries. This opinion piece draws on the stakeholder engagement experiences from a global health research programme on Chronic Obstructive Pulmonary Disease (COPD) led by clinician researchers in Brazil, China, Georgia and North Macedonia, and presents the process, outcomes and lessons learned.MAIN BODY: Each country team was supported with an overarching engagement protocol and mentored to develop a tailored plan. Patient involvement in research was previously limited in all countries, requiring intensive efforts through personal communication, meetings, advisory groups and social media. Accredited training programmes were effective incentives for participation from healthcare providers; and aligning research findings with competing policy priorities enabled interest and dialogue with decision-makers. The COVID-19 pandemic severely limited possibilities for planned engagement, although remote methods were used where possible. Planned and persistent engagement contributed to shared knowledge and commitment to change, including raised patient and public awareness about COPD, improved skills and practice of healthcare providers, increased interest and support from clinical leaders, and dialogue for integrating COPD services into national policy and practice.CONCLUSION: Stakeholder engagement enabled relevant local actors to produce and utilise knowledge for small wins such as improving day-to-day practice and for long-term goals of equitable access to COPD care. For it to be successful and sustained, stakeholder engagement needs to be valued and integrated throughout the research and knowledge generation process, complete with dedicated resources, contextualised and flexible planning, and commitment.",

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note = "Funding: This research was funded by the National Institute for Health and Care Research (NIHR) NIHR global group on global COPD in primary care, University of Birmingham, (project reference: 16/137/95) using UK aid from the UK Government to support global health research. The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR or the UK Department of Health and Social Care. Copyright: {\textcopyright} 2024. The Author(s).",

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Fernandes, G, Williams, S, Adab, P , Gale, N, de Jong, C, Correia-de-Sousa, J, Cheng, KK, Chi, C, Cooper, BG, Dickens, AP, Enocson, A, Farley, A , Jolly, K , Jowett, S, Maglakelidze, M, Maghlakelidze, T, Martins, S, Sitch, A, Stamenova, A, Stavrikj, K, Stelmach, R, Turner, A, Pan, Z, Pang, H, Zhang, J & Jordan, RE 2024, 'Engaging stakeholders to level up COPD care in LMICs: lessons learned from the "Breathe Well" programme in Brazil, China, Georgia, and North Macedonia', BMC Health Services Research, vol. 24, no. 1, 66. https://doi.org/10.1186/s12913-023-10525-4

TY - JOUR

T1 - Engaging stakeholders to level up COPD care in LMICs

T2 - lessons learned from the "Breathe Well" programme in Brazil, China, Georgia, and North Macedonia

AU - Fernandes, Genevie

AU - Williams, Siân

AU - Adab, Peymané

AU - Gale, Nicola

AU - de Jong, Corina

AU - Correia-de-Sousa, Jaime

AU - Cheng, KK

AU - Chi, Chunhua

AU - Cooper, Brendan G.

AU - Dickens, Andrew P.

AU - Enocson, Alexandra

AU - Farley, Amanda

AU - Jolly, Kate

AU - Jowett, Sue

AU - Maglakelidze, Maka

AU - Maghlakelidze, Tamaz

AU - Martins, Sonia

AU - Sitch, Alice

AU - Stamenova, Aleksandra

AU - Stavrikj, Katarina

AU - Stelmach, Rafael

AU - Turner, Alice

AU - Pan, Zihan

AU - Pang, Hui

AU - Zhang, Jianxin

AU - Jordan, Rachel E.

N1 - Funding: This research was funded by the National Institute for Health and Care Research (NIHR) NIHR global group on global COPD in primary care, University of Birmingham, (project reference: 16/137/95) using UK aid from the UK Government to support global health research. The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR or the UK Department of Health and Social Care. Copyright: © 2024. The Author(s).

PY - 2024/1/12

Y1 - 2024/1/12

N2 - BACKGROUND: Effective stakeholder engagement in health research is increasingly being recognised and promoted as an important pathway to closing the gap between knowledge production and its use in health systems. However, little is known about its process and impacts, particularly in low-and middle-income countries. This opinion piece draws on the stakeholder engagement experiences from a global health research programme on Chronic Obstructive Pulmonary Disease (COPD) led by clinician researchers in Brazil, China, Georgia and North Macedonia, and presents the process, outcomes and lessons learned.MAIN BODY: Each country team was supported with an overarching engagement protocol and mentored to develop a tailored plan. Patient involvement in research was previously limited in all countries, requiring intensive efforts through personal communication, meetings, advisory groups and social media. Accredited training programmes were effective incentives for participation from healthcare providers; and aligning research findings with competing policy priorities enabled interest and dialogue with decision-makers. The COVID-19 pandemic severely limited possibilities for planned engagement, although remote methods were used where possible. Planned and persistent engagement contributed to shared knowledge and commitment to change, including raised patient and public awareness about COPD, improved skills and practice of healthcare providers, increased interest and support from clinical leaders, and dialogue for integrating COPD services into national policy and practice.CONCLUSION: Stakeholder engagement enabled relevant local actors to produce and utilise knowledge for small wins such as improving day-to-day practice and for long-term goals of equitable access to COPD care. For it to be successful and sustained, stakeholder engagement needs to be valued and integrated throughout the research and knowledge generation process, complete with dedicated resources, contextualised and flexible planning, and commitment.

AB - BACKGROUND: Effective stakeholder engagement in health research is increasingly being recognised and promoted as an important pathway to closing the gap between knowledge production and its use in health systems. However, little is known about its process and impacts, particularly in low-and middle-income countries. This opinion piece draws on the stakeholder engagement experiences from a global health research programme on Chronic Obstructive Pulmonary Disease (COPD) led by clinician researchers in Brazil, China, Georgia and North Macedonia, and presents the process, outcomes and lessons learned.MAIN BODY: Each country team was supported with an overarching engagement protocol and mentored to develop a tailored plan. Patient involvement in research was previously limited in all countries, requiring intensive efforts through personal communication, meetings, advisory groups and social media. Accredited training programmes were effective incentives for participation from healthcare providers; and aligning research findings with competing policy priorities enabled interest and dialogue with decision-makers. The COVID-19 pandemic severely limited possibilities for planned engagement, although remote methods were used where possible. Planned and persistent engagement contributed to shared knowledge and commitment to change, including raised patient and public awareness about COPD, improved skills and practice of healthcare providers, increased interest and support from clinical leaders, and dialogue for integrating COPD services into national policy and practice.CONCLUSION: Stakeholder engagement enabled relevant local actors to produce and utilise knowledge for small wins such as improving day-to-day practice and for long-term goals of equitable access to COPD care. For it to be successful and sustained, stakeholder engagement needs to be valued and integrated throughout the research and knowledge generation process, complete with dedicated resources, contextualised and flexible planning, and commitment.

KW - Humans

KW - Developing Countries

KW - Georgia

KW - Brazil

KW - Republic of North Macedonia

KW - Pandemics

U2 - 10.1186/s12913-023-10525-4

DO - 10.1186/s12913-023-10525-4

M3 - Article

C2 - 38216986

SN - 1472-6963

VL - 24

JO - BMC Health Services Research

JF - BMC Health Services Research

IS - 1

M1 - 66

ER -

Engaging stakeholders to level up COPD care in LMICs: lessons learned from the "Breathe Well" programme in Brazil, China, Georgia, and North Macedonia

Abstract

Bibliographical note

Keywords

Access to Document

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Projects

Global-COPD group: improving the diagnosis, management and prognosis of COPD patients in low and middle income countries (OPEN FOR DISSEMINATION ONLY)

Cite this