Social Media and Dementia Prevention Research
Co-creating Recommendations for Ethical Social Media Use
in Dementia Prevention Trials
in Dementia Prevention Trials
In this project, we set out to co-create recommendations that address the risks and benefits of social media use in dementia prevention research.
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Why is this research important?
Dementia research is still receiving limited engagement and low enrolment numbers, especially in diverse populations. Social media offers new ways to overcome geographical and financial barriers and can increase awareness of important dementia research. The aim of this research study was to co-create practical recommendations for dementia researchers using social media in prevention. We hope to support research-led engagement on social media in a way that is ethical and beneficial for all. What did we do? |
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With both professional and community experts, we co-created a set of social media recommendations for the dementia prevention research context.
This project was led by Viorica Hrincu, PhD Student in the NEST Lab.
This project was led by Viorica Hrincu, PhD Student in the NEST Lab.
What did we find?
Social media recommendations are organised into 8 use cases. These include, for example:
- advice on setting up a social media community
- handling online misinformation
- challenging stigma
- handling difficult online interactions
- introducing new research to the public
- study recruitment advice
- language to use when writing social media posts
Publications & Media
Hrincu V, Roy KT, Robillard JM. Practical social media recommendations for dementia prevention researchers. Alzheimer's & Dementia: Translational Research & Clinical Interventions. 2024 Jul;10(3):e12496. Google Scholar
Hrincu V, Zaleski G, Robillard JM. Ethical considerations at the intersection of social media and dementia prevention research. The Journal of Prevention of Alzheimer's Disease. 2024 Mar 1;11(2):274-84. Google Scholar
Hrincu V. Would you join a clinical trial advertised on Facebook? The ethics of dementia research content on social media. 2022 Blogpost. Neuroethics Canada
Hrincu V, An Z, Joseph K, Jiang YF, Robillard JM. Dementia research on Facebook and Twitter: current practice and challenges. Journal of Alzheimer's Disease. 2022 Jan 1;90(2):447-59. Google Scholar
Hrincu V, Zaleski G, Robillard JM. Ethical considerations at the intersection of social media and dementia prevention research. The Journal of Prevention of Alzheimer's Disease. 2024 Mar 1;11(2):274-84. Google Scholar
Hrincu V. Would you join a clinical trial advertised on Facebook? The ethics of dementia research content on social media. 2022 Blogpost. Neuroethics Canada
Hrincu V, An Z, Joseph K, Jiang YF, Robillard JM. Dementia research on Facebook and Twitter: current practice and challenges. Journal of Alzheimer's Disease. 2022 Jan 1;90(2):447-59. Google Scholar
External Contributors
Dr. Serge Gauthier, Co-Investigator - McGill University
Dr. Matthew Lariviere, Co-Investigator - Northumbria University
Dr. Richard Milne, Co-Investigator - University of Cambridge
Dr. Ara Khachaturian, Co-Investigator - Chair and President, National Biomedical Research Ethics Council (NBREC)
Dr. Kenneth Joseph, Collaborator - University of Buffalo
Dr. Zijian An, Collaborator - University of Buffalo
Dr. Matthew Lariviere, Co-Investigator - Northumbria University
Dr. Richard Milne, Co-Investigator - University of Cambridge
Dr. Ara Khachaturian, Co-Investigator - Chair and President, National Biomedical Research Ethics Council (NBREC)
Dr. Kenneth Joseph, Collaborator - University of Buffalo
Dr. Zijian An, Collaborator - University of Buffalo
Funders & Collaborators
We are proud to have received funding for this project from the following organizations
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