Broadening the diversity of consumers engaged in guidelines: a scoping review
Background Guideline developers are encouraged to engage patients, carers and their representatives (‘consumers’) from diverse backgrounds in guideline development to produce more widely applicable guidelines. However, consumers from diverse backgrounds are infrequently included in guidelines and th...
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| Format: | Article |
| Language: | English |
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BMJ Publishing Group
2022-06-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/12/6/e058326.full |
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| author | Sophie Hill Tari Turner Anneliese Synnot Kelvin Hill Allison Jauré Bronwen Merner Peta Bates Alexandra Liacos |
| author_facet | Sophie Hill Tari Turner Anneliese Synnot Kelvin Hill Allison Jauré Bronwen Merner Peta Bates Alexandra Liacos |
| author_sort | Sophie Hill |
| collection | DOAJ |
| description | Background Guideline developers are encouraged to engage patients, carers and their representatives (‘consumers’) from diverse backgrounds in guideline development to produce more widely applicable guidelines. However, consumers from diverse backgrounds are infrequently included in guidelines and there is scant research to support guideline developers to do this.Objectives To identify principles and approaches to broaden the diversity of consumers engaged in guideline development.Design Scoping review and semi-structured interviews.Methods We conducted comprehensive searches to March 2020 for studies, reports and guidance documents. Inclusion criteria included the terms ‘consumer’ (patients, carers and their representatives), ‘diversity’ (defined using the PROGRESS-PLUS mnemonic) and ‘consumer engagement’ (the active involvement of consumers at any stage of guideline development). We also conducted four interviews with consumers and guideline developers. We used descriptive synthesis to identify themes, and summarised information about implemented approaches used to broaden diversity of consumers in guidelines.Results From 10 included documents, we identified eight themes. Themes covered general engagement concepts (Respectful partnerships; Recruitment; Expectations, process and review); specific concepts about guideline development group (GDG) engagement (Characteristics of guideline personnel; Consumers’ role, characteristics and prominence; Preparing and supporting consumers); and other (non-GDG) approaches (Online methods; Consultations and research-based approaches). The most commonly included PROGRESS-PLUS categories were Disability, Race/culture/ethnicity/language, Place of residence and Other vulnerable (eg, ‘disadvantaged groups’). Each theme included the views of both consumers and guideline developers. We found descriptions of 12 implemented engagement approaches to broaden diversity of consumers in guidelines.Conclusions Relationship-building, mitigating power imbalances and meeting consumers where they are at underpin our findings. Engaging with diverse groups may require greater attention to building formal, respectful partnerships and employing inclusive engagement methods. |
| format | Article |
| id | doaj-art-252242f2275e4342af45db8338ae427f |
| institution | Kabale University |
| issn | 2044-6055 |
| language | English |
| publishDate | 2022-06-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-252242f2275e4342af45db8338ae427f2025-01-28T07:40:13ZengBMJ Publishing GroupBMJ Open2044-60552022-06-0112610.1136/bmjopen-2021-058326Broadening the diversity of consumers engaged in guidelines: a scoping reviewSophie Hill0Tari Turner1Anneliese Synnot2Kelvin Hill3Allison Jauré4Bronwen Merner5Peta Bates6Alexandra Liacos7researcherprofessor2 Cochrane Australia, School of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia5 Stroke Foundation, Melbourne, Victoria, Australia2 Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, AustraliaCentre for Health Communication and Participation, La Trobe University, Melbourne, Victoria, Australia6 Murdoch Children`s Research Institute, Melbourne, Victoria, Australia7 Eastern Health, Box Hill, Victoria, AustraliaBackground Guideline developers are encouraged to engage patients, carers and their representatives (‘consumers’) from diverse backgrounds in guideline development to produce more widely applicable guidelines. However, consumers from diverse backgrounds are infrequently included in guidelines and there is scant research to support guideline developers to do this.Objectives To identify principles and approaches to broaden the diversity of consumers engaged in guideline development.Design Scoping review and semi-structured interviews.Methods We conducted comprehensive searches to March 2020 for studies, reports and guidance documents. Inclusion criteria included the terms ‘consumer’ (patients, carers and their representatives), ‘diversity’ (defined using the PROGRESS-PLUS mnemonic) and ‘consumer engagement’ (the active involvement of consumers at any stage of guideline development). We also conducted four interviews with consumers and guideline developers. We used descriptive synthesis to identify themes, and summarised information about implemented approaches used to broaden diversity of consumers in guidelines.Results From 10 included documents, we identified eight themes. Themes covered general engagement concepts (Respectful partnerships; Recruitment; Expectations, process and review); specific concepts about guideline development group (GDG) engagement (Characteristics of guideline personnel; Consumers’ role, characteristics and prominence; Preparing and supporting consumers); and other (non-GDG) approaches (Online methods; Consultations and research-based approaches). The most commonly included PROGRESS-PLUS categories were Disability, Race/culture/ethnicity/language, Place of residence and Other vulnerable (eg, ‘disadvantaged groups’). Each theme included the views of both consumers and guideline developers. We found descriptions of 12 implemented engagement approaches to broaden diversity of consumers in guidelines.Conclusions Relationship-building, mitigating power imbalances and meeting consumers where they are at underpin our findings. Engaging with diverse groups may require greater attention to building formal, respectful partnerships and employing inclusive engagement methods.https://bmjopen.bmj.com/content/12/6/e058326.full |
| spellingShingle | Sophie Hill Tari Turner Anneliese Synnot Kelvin Hill Allison Jauré Bronwen Merner Peta Bates Alexandra Liacos Broadening the diversity of consumers engaged in guidelines: a scoping review BMJ Open |
| title | Broadening the diversity of consumers engaged in guidelines: a scoping review |
| title_full | Broadening the diversity of consumers engaged in guidelines: a scoping review |
| title_fullStr | Broadening the diversity of consumers engaged in guidelines: a scoping review |
| title_full_unstemmed | Broadening the diversity of consumers engaged in guidelines: a scoping review |
| title_short | Broadening the diversity of consumers engaged in guidelines: a scoping review |
| title_sort | broadening the diversity of consumers engaged in guidelines a scoping review |
| url | https://bmjopen.bmj.com/content/12/6/e058326.full |
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