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The role of Participatory Action Research in developing new models of healthcare: perspectives from participants and recommendations for ethical review and governance oversight

The role of Participatory Action Research in developing new models of healthcare: perspectives from participants and recommendations for ethical review and governance oversight
The role of Participatory Action Research in developing new models of healthcare: perspectives from participants and recommendations for ethical review and governance oversight
Background: Participatory Action Research (PAR) is a methodology often used in social sciences, which involves groups of people in action, reflection and iterative change. In PAR, ‘traditional’ researchers become participants, and people who comprise ‘traditional’ participants become researchers, facilitating cohesiveness and communication within the team. However, PAR is less used in healthcare, despite the . complexity of providing and receiving health and social care. Development and testing of the delivery of new models of care is an area with increasing service-user participation, but often with no structured or formalised framework to embed end-users. This may be due in part to the complex ethical and governance systems in healthcare research, and the lack of practical guidance on using PAR as a research method within this context.

Methods: we carried out a PAR project to develop and evaluate the implementation of a new model of care for the assessment and management of respiratory conditions in the community (MISSION ABC). The care model delivered a community-based multidisciplinary clinic involving healthcare staff from both primary and secondary care. Regular sessions were held for participants (including patients, healthcare staff, research staff) to discuss observations, reflections and suggestions for the development and delivery of the care model. At the end of the project, meetings were held with representatives from the different groups of participants to discuss overall views about the study and ethics and research governance challenges specifically.

Results: we present key perspectives from various stakeholders involved in the PAR process, highlighting benefits and challenges. Specific challenges relating to ethical and governance approvals encountered in the set-up and delivery of the project are described. These include the design of the study protocol, approaches to consent, presentation of study information within the current ethical and regulatory frameworks and maintaining the flexibility of study methods and roles of participants throughout the study period. Recommendations for improvement in the research pathway that PAR researchers could adopt to enable a meaningful and successful PAR approach are made, in addition to suggestions for overarching ethics and governance frameworks.

Conclusions: developing new models of healthcare benefits significantly from collaboration with stakeholders so that the design and delivery are feasible and acceptable to all. However, the current UK research approvals and governance frameworks present challenges to design and successfully deliver PAR studies in healthcare; we present possible solutions.
Fogg, Carole
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Lanning, Ellie
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Shoebridge, Joe
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Longstaff, Jayne
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DeVos, Ruth
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Dawson-Taylor, Kate
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Glanville-Hearson, Annabelle
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Carpenter, David
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Court, Sharon
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Brown, Thomas
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Heiden, Emily
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Chauhan, Anoop
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Fogg, Carole
42057537-d443-462a-8944-c804252c973b
Lanning, Ellie
800b0aaa-9e79-408a-bdd3-70d013fc3d20
Shoebridge, Joe
83330b53-4b6f-4004-be00-cd4b02d8161b
Longstaff, Jayne
04188cf1-96bc-4b51-bce5-aa289ed034c4
DeVos, Ruth
18b46237-2ece-41e6-859f-458bd2a5cb42
Dawson-Taylor, Kate
a99aa726-44f5-4de8-96cd-717c97912c97
Glanville-Hearson, Annabelle
c8ea9401-2fdc-4559-84ca-2d61a9582a7f
Carpenter, David
c774c784-80b2-4647-a143-ebdf61c3281c
Court, Sharon
df580a9a-07dd-4b72-ab9b-97b5a189fd42
Brown, Thomas
17fc939f-0ac6-4e27-a9e5-14b512a56f25
Heiden, Emily
75b03584-69e4-43ab-9fe2-32120667a18a
Chauhan, Anoop
e01b8b14-05d6-4b11-a9e5-0a43ee428c32

Fogg, Carole, Lanning, Ellie, Shoebridge, Joe, Longstaff, Jayne, DeVos, Ruth, Dawson-Taylor, Kate, Glanville-Hearson, Annabelle, Carpenter, David, Court, Sharon, Brown, Thomas, Heiden, Emily and Chauhan, Anoop (2022) The role of Participatory Action Research in developing new models of healthcare: perspectives from participants and recommendations for ethical review and governance oversight. Journal of Ethics, Medicine and Public Health. (In Press)

Record type: Article

Abstract

Background: Participatory Action Research (PAR) is a methodology often used in social sciences, which involves groups of people in action, reflection and iterative change. In PAR, ‘traditional’ researchers become participants, and people who comprise ‘traditional’ participants become researchers, facilitating cohesiveness and communication within the team. However, PAR is less used in healthcare, despite the . complexity of providing and receiving health and social care. Development and testing of the delivery of new models of care is an area with increasing service-user participation, but often with no structured or formalised framework to embed end-users. This may be due in part to the complex ethical and governance systems in healthcare research, and the lack of practical guidance on using PAR as a research method within this context.

Methods: we carried out a PAR project to develop and evaluate the implementation of a new model of care for the assessment and management of respiratory conditions in the community (MISSION ABC). The care model delivered a community-based multidisciplinary clinic involving healthcare staff from both primary and secondary care. Regular sessions were held for participants (including patients, healthcare staff, research staff) to discuss observations, reflections and suggestions for the development and delivery of the care model. At the end of the project, meetings were held with representatives from the different groups of participants to discuss overall views about the study and ethics and research governance challenges specifically.

Results: we present key perspectives from various stakeholders involved in the PAR process, highlighting benefits and challenges. Specific challenges relating to ethical and governance approvals encountered in the set-up and delivery of the project are described. These include the design of the study protocol, approaches to consent, presentation of study information within the current ethical and regulatory frameworks and maintaining the flexibility of study methods and roles of participants throughout the study period. Recommendations for improvement in the research pathway that PAR researchers could adopt to enable a meaningful and successful PAR approach are made, in addition to suggestions for overarching ethics and governance frameworks.

Conclusions: developing new models of healthcare benefits significantly from collaboration with stakeholders so that the design and delivery are feasible and acceptable to all. However, the current UK research approvals and governance frameworks present challenges to design and successfully deliver PAR studies in healthcare; we present possible solutions.

Text
MISSION PAR manuscript revised v2 submitted no tracking - Accepted Manuscript
Restricted to Repository staff only until 18 August 2024.
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Accepted/In Press date: 18 August 2022

Identifiers

Local EPrints ID: 469547
URI: http://eprints.soton.ac.uk/id/eprint/469547
PURE UUID: 3bf2ac4d-7563-42ed-8ae3-0782b7a63b0d
ORCID for Carole Fogg: ORCID iD orcid.org/0000-0002-3000-6185

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Date deposited: 20 Sep 2022 16:34
Last modified: 21 Sep 2022 01:58

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Contributors

Author: Carole Fogg ORCID iD
Author: Ellie Lanning
Author: Joe Shoebridge
Author: Jayne Longstaff
Author: Ruth DeVos
Author: Kate Dawson-Taylor
Author: Annabelle Glanville-Hearson
Author: David Carpenter
Author: Sharon Court
Author: Thomas Brown
Author: Emily Heiden
Author: Anoop Chauhan

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