Citizen science to improve patient and public involvement in GUideline Implementation in oral health and DEntistry (the GUIDE platform).
citizen science
clinical guidelines
implementation of guidelines
oral health
patient and public engagement
patient and public involvement
Journal
Health expectations : an international journal of public participation in health care and health policy
ISSN: 1369-7625
Titre abrégé: Health Expect
Pays: England
ID NLM: 9815926
Informations de publication
Date de publication:
28 Nov 2023
28 Nov 2023
Historique:
revised:
13
11
2023
received:
12
06
2023
accepted:
15
11
2023
medline:
28
11
2023
pubmed:
28
11
2023
entrez:
28
11
2023
Statut:
aheadofprint
Résumé
Citizen science is a way to democratise science by involving groups of citizens in the research process. Clinical guidelines are used to improve practice, but their implementation can be limited. Involving patients and the public can enhance guideline implementation, but there is uncertainty about the best approaches to achieve this. Citizen science is a potential way to involve patients and the public in improving clinical guideline implementation. We aimed to explore the application of citizen science methods to involve patients and the public in the dissemination and implementation of clinical guidelines in oral health and dentistry. We developed GUIDE (GUideline Implementation in oral health and DEntistry), a citizen science online platform, using a participatory approach with researchers, oral health professionals, guideline developers and citizens. Recruitment was conducted exclusively online. The platform focused on prespecified challenges related to oral health assessment guidelines, and asked citizens to generate ideas, as well as vote and comment on other citizens' ideas to improve those challenges. Citizens also shared their views via surveys and two online synchronous group meetings. Data were collected on participant's demographics, platform engagement and experience of taking part. The most promising idea category was identified by an advisory group based on engagement, feasibility and relevance. We presented quantitative data using descriptive statistics and analysed qualitative data using inductive and deductive thematic analysis. The platform was open for 6 months and we recruited 189 citizens, from which over 90 citizens actively engaged with the platform. Most citizens were over 34 years (64%), female (58%) and had a university degree (50%). They generated 128 ideas, 146 comments and 248 votes. The challenge that led to most engagement was related to prevention and oral health self-care. To take this challenge forward, citizens generated a further 36 ideas to improve a pre-existing National Health Service oral care prevention leaflet. Citizens discussed motivations to take part in the platform (understanding, values, self-care), reasons to stay engaged (communication and feedback, outputs and impact, and relevance of topics discussed) and suggestions to improve future platforms. Citizen science is an effective approach to generate and prioritise ideas from a group of citizens to improve oral health and dental services. Prevention and oral health self-care were of particular interest to citizens. More research is needed to ensure recruitment of a diverse group of citizens and to improve retention in citizen science projects. This project was inherently conducted with the input of public partners (citizen scientists) in all key aspects of its conduct and interpretation. In addition, two public partners were part of the research team and contributed to the design of the project, as well as key decisions related to its conduct, analysis, interpretation and dissemination and are co-authors of this manuscript.
Sections du résumé
BACKGROUND
BACKGROUND
Citizen science is a way to democratise science by involving groups of citizens in the research process. Clinical guidelines are used to improve practice, but their implementation can be limited. Involving patients and the public can enhance guideline implementation, but there is uncertainty about the best approaches to achieve this. Citizen science is a potential way to involve patients and the public in improving clinical guideline implementation. We aimed to explore the application of citizen science methods to involve patients and the public in the dissemination and implementation of clinical guidelines in oral health and dentistry.
METHODS
METHODS
We developed GUIDE (GUideline Implementation in oral health and DEntistry), a citizen science online platform, using a participatory approach with researchers, oral health professionals, guideline developers and citizens. Recruitment was conducted exclusively online. The platform focused on prespecified challenges related to oral health assessment guidelines, and asked citizens to generate ideas, as well as vote and comment on other citizens' ideas to improve those challenges. Citizens also shared their views via surveys and two online synchronous group meetings. Data were collected on participant's demographics, platform engagement and experience of taking part. The most promising idea category was identified by an advisory group based on engagement, feasibility and relevance. We presented quantitative data using descriptive statistics and analysed qualitative data using inductive and deductive thematic analysis.
RESULTS
RESULTS
The platform was open for 6 months and we recruited 189 citizens, from which over 90 citizens actively engaged with the platform. Most citizens were over 34 years (64%), female (58%) and had a university degree (50%). They generated 128 ideas, 146 comments and 248 votes. The challenge that led to most engagement was related to prevention and oral health self-care. To take this challenge forward, citizens generated a further 36 ideas to improve a pre-existing National Health Service oral care prevention leaflet. Citizens discussed motivations to take part in the platform (understanding, values, self-care), reasons to stay engaged (communication and feedback, outputs and impact, and relevance of topics discussed) and suggestions to improve future platforms.
CONCLUSION
CONCLUSIONS
Citizen science is an effective approach to generate and prioritise ideas from a group of citizens to improve oral health and dental services. Prevention and oral health self-care were of particular interest to citizens. More research is needed to ensure recruitment of a diverse group of citizens and to improve retention in citizen science projects.
PATIENT OR PUBLIC CONTRIBUTION
UNASSIGNED
This project was inherently conducted with the input of public partners (citizen scientists) in all key aspects of its conduct and interpretation. In addition, two public partners were part of the research team and contributed to the design of the project, as well as key decisions related to its conduct, analysis, interpretation and dissemination and are co-authors of this manuscript.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Subventions
Organisme : Wellcome Trust Institutional Strategic Support Fund at the University of Aberdeen
Organisme : Chief Scientist's Office of the Scottish Government's Health and Social Care Directorates
Informations de copyright
© 2023 The Authors. Health Expectations published by John Wiley & Sons Ltd.
Références
Vohland K, Land-Zandstra A, Ceccaroni L, eds. The Science of Citizen Science. Springer; 2021.
Franzoni C, Poetz M, Sauermann H. Crowds, citizens, and science: a multi-dimensional framework and agenda for future research. Ind Innov. 2022;29(2):251-284. doi:10.1080/13662716.2021.1976627
Parks S, D'Angelo C, Gunashekar S. Citizen Science: Generating Ideas and Exploring Consensus. THIS Institute; 2018:1-16. https://www.thisinstitute.cam.ac.uk/using-citizen-science-to-generate-ideas-and-build-consensus-explored-in-new-report/
Clarkson JE, Ramsay CR, Eccles MP, et al. The translation research in a dental setting (TRiaDS) programme protocol. Implement Sci. 2010;5(1):57.
Armstrong MJ, Mullins CD, Gronseth GS, Gagliardi AR. Impact of patient involvement on clinical practice guideline development: a parallel group study. Implement Sci. 2018;13(1):55.
Gagliardi AR, Brouwers MC, Palda VA, Lemieux-Charles L, Grimshaw JM. How can we improve guideline use? A conceptual framework of implementability. Implement Sci. 2011;6(1):26.
Scottish Dental Clinical Effectiveness Programme. Accessed November 10, 2023. https://www.sdcep.org.uk/
Bryant EA, Scott AM, Greenwood H, Thomas R. Patient and public involvement in the development of clinical practice guidelines: a scoping review. BMJ Open. 2022;12(9):e055428.
Armstrong MJ, Bloom JA. Patient involvement in guidelines is poor five years after institute of Medicine standards: review of guideline methodologies. Res Involv Engagem. 2017;3(1):19.
Wu F, Burt J, Chowdhury T, et al. Specialty COPD care during COVID-19: patient and clinician perspectives on remote delivery. BMJ Open Respir Res. 2021;8(1):e000817.
Armstrong MJ, Rueda JD, Gronseth GS, Mullins CD. Framework for enhancing clinical practice guidelines through continuous patient engagement. Health Expect. 2017;20(1):3-10.
Oral Health Assessment and Review. Scottish Dental Clinical Effectiveness Programme. 2011. Accessed November 10, 2023. https://www.sdcep.org.uk/media/b1vlxume/sdcep-ohar-guidance-in-brief.pdf
Beaton L, Clarkson J, Murray D, et al. Oral Health Assessment and Review: An Investigation of Current Practice and Beliefs. NHS Education for Scotland; 2019.
Bowser A, Hansen D, He Y, et al. Using gamification to inspire new citizen science volunteers. ACM Int Conf Proceeding Ser. 2013;(2018):18-25.
Marks L, Laird Y, Trevena H, Smith BJ, Rowbotham S. A scoping review of citizen science approaches in chronic disease prevention. Front Public Health. 2022;10:1-16.
Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277-1288.
Braun V, Clarke V. Successful Qualitative Research: A Practical Guide for Beginners. Sage; 2013.
Finkelstien MA. Intrinsic vs. extrinsic motivational orientations and the volunteer process. Pers Individ Dif. 2009;46(5-6):653-658. doi:10.1016/j.paid.2009.01.010
Geoghegan H, Dyke A, Pateman R, West S, Everett G. Understanding motivations for citizen science. United Kingdom Environmental Observation Framework. 2016. Accessed September 15, 2023. https://www.ukeof.org.uk/resources/citizen-science-resources/MotivationsforCSREPORTFINALMay2016.pdf
Your Oral Health: prevention of gum disease. Scottish Dental Clinical Effectiveness Programme. Accessed November 10, 2023. https://www.sdcep.org.uk/media/xqsl3tpw/sdcep-oral-hygiene-leaflet-for-patients.pdf
Evans D, Mills I, Burns L, Bryce M, Hanks S. The dental workforce recruitment and retention crisis in the UK. Br Dent J. 2023;234(8):573-577.
Duncan EM, Goulao B, Clarkson J, Young L, Ramsay CR. “You had to do something”: prescribing antibiotics in Scotland during the COVID-19 pandemic restrictions and remobilisation. Br Dent J. 2021;231(11):695.
Clarkson JE, Pitts NB, Fee PA, et al. Examining the effectiveness of different dental recall strategies on maintenance of optimum oral health: the INTERVAL dental recalls randomised controlled trial. Br Dent J. 2021;230(4):236-243.
Clarkson J, Ramsay C, Lamont T, et al. Examining the impact of oral hygiene advice and/or scale and polish on periodontal disease: the IQuaD cluster factorial randomised controlled trial. Br Dent J. 2021;230(4):229-235.
Lehman E, Jepson R, McAteer J, Archibald D. What motivates volunteers to engage in health-related citizen science initiatives? A case study of our outdoors. Int J Environ Res Public Health. 2020;17(19):6950.
Mathie E. Patient involvement in health research can be enhanced by regular feedback. Health Service Journal. 2018. https://www.hsj.co.uk/comment/patient-involvement-in-health-research-can-be-enhanced-by-regular-feedback/7022294.article
Baines R, Bradwell H, Edwards K, et al. Meaningful patient and public involvement in digital health innovation, implementation and evaluation: a systematic review. Health Expect. 2022;25(4):1232-1245.
van der Scheer JW, Woodward M, Ansari A, et al. How to specify healthcare process improvements collaboratively using rapid, remote consensus-building: a framework and a case study of its application. BMC Med Res Methodol. 2021;21(1):103.
Oral and Dental Health Top 10. James Lind Alliance; 2018. Accessed September 15, 2023. https://www.jla.nihr.ac.uk/priority-setting-partnerships/oral-and-dental-health/
Brett J, Staniszewska S, Mockford C, et al. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect. 2014;17(5):637-650.
Dawson S, Campbell SM, Giles SJ, Morris RL, Cheraghi-Sohi S. Black and minority ethnic group involvement in health and social care research: a systematic review. Health Expect. 2018;21(1):3-22.
Office for National Statistics. Census 2021. 2022. https://www.ons.gov.uk/census/planningforcensus2021/ukcensusdata
Hinton L, Kuberska K, Dakin F, et al. A qualitative study of the dynamics of access to remote antenatal care through the lens of candidacy. J Health Serv Res Policy. 2023;28(4):222-232.
Pandya RE. A framework for engaging diverse communities in citizen science in the US. Front Ecol Environ. 2012;10(6):314-317.
Sorensen AE, Jordan RC, LaDeau SL, et al. Reflecting on efforts to design an inclusive citizen science project in West Baltimore. Citiz Sci Theory Pract. 2019;4(1):1-12.
Newton J, White S. Inequalities in Oral Health in England. Public Health England; 2021. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/970380/Inequalities_in_oral_health_in_England.pdf
Crall A, Kosmala M, Cheng R, et al. Volunteer recruitment and retention in online citizen science projects using marketing strategies: lessons from season spotter. J Sci Commun. 2017;16(1):A01.
Aristeidou M, Herodotou C, Ballard HL, et al. Exploring the participation of young citizen scientists in scientific research: the case of inaturalist. PLoS One. 2021;16(1):e0245682. doi:10.1371/journal.pone.0245682
Newlands R, Duncan E, Presseau J, et al. Why trials lose participants: a multitrial investigation of participants' perspectives using the theoretical domains framework. J Clin Epidemiol. 2021;137:1-13. doi:10.1016/j.jclinepi.2021.03.007