Citizen science to improve patient and public involvement in GUideline Implementation in oral health and DEntistry (the GUIDE platform)

Annabel Hosie* (Corresponding Author), Maria Firdaus, Jan Clarkson, Ekta Gupta, Lynn Laidlaw, Thomas Lamont, Margaret Mooney, Gillian Nevin, Craig Ramsay, Samantha Rutherford, Ana Margarida Sardo, Irene Soulsby, Derek Richards, Douglas Stirling, Michele West, Beatriz Goulao* (Corresponding Author)

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

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
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
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
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
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.
Original languageEnglish
Article numbere13921
Number of pages12
JournalHealth Expectations
Volume27
Issue number1
Early online date28 Nov 2023
DOIs
Publication statusPublished - Feb 2024

Bibliographical note

Research Funding
Wellcome Trust Institutional Strategic Support Fund at the University of Aberdeen Chief Scientist's Office of the Scottish Government's Health and Social Care Directorates

Acknowledgements
We would like to thank all citizens who joined and engaged with the GUIDE platform for their time, ideas and enthusiasm. We would like to thank NHS Education of Scotland for supporting the project. The GUIDE project was funded by the Wellcome Trust Institutional Strategic Support Fund at the University of Aberdeen. The Health Services Research Unit is funded by the Chief Scientist's Office of the Scottish Government's Health and Social Care Directorates.

Data Availability Statement

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions. The data sets used and/or analysed during the current study are available from the corresponding author upon reasonable request. The image used in Figure 1 is from https://guideoralhealth.crowdicity.com/.

Supporting information
Additional supporting information can be found online in the Supporting Information section at the end of this article.

Keywords

  • citizen science
  • clinical guidelines
  • implementation of guideline
  • oral health
  • patient and public engagement
  • patient and public involvement

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