Would you join a clinical trial advertised on Facebook? The ethics of dementia research content on social media

Some areas of dementia research are relevant to healthy older adults, and social media can help spread the word. What should researchers and the public know about dementia research content on social media to support future brain health?

Dementia risk reduction is highly relevant for healthy adults. Addressing certain lifestyle factors may reduce future cases of dementia (1). Examples include education, performing physical activity, quitting smoking, preventing head injury, and stabilizing blood pressure.

Online exposure to this topic may encourage lifestyle changes but also promote much-needed dementia research participation for risk reduction. Some dementia researchers are turning to social media as a low-cost way to increase community awareness and research participation (2–5).

Appropriateness of social media in brain health research

Health-related content on social media is not without risk. Ethical concerns accompany the use of social media in research (6,7). Common concerns include privacy, confidentiality, informed consent, the spread of misinformation, and the protection of vulnerable groups. 

Understanding how dementia research is typically presented online can inform social media use to improve public involvement. Currently, however, there is no thorough overview of the type of dementia research content users may encounter on social media. 

To inform future ethical guidance of online brain health engagement, we investigated current uses of social media for dementia research. 

Image by Jason A. Howie under the cc-by-2.0 license on Wikimedia Commons. Creator assumes no responsibility or liability for the content of this site. Original image.

Dementia research on Facebook vs. Twitter

We reviewed a sample of public dementia research posts on Facebook and Twitter (8). Our analysis included understanding the types of users posting about dementia research and the topics discussed. 

Facebook users were mainly advocacy and health organizations rather than individuals. In contrast, Twitter users largely had academic or research backgrounds. This difference in user groups may explain the greater amount of academic content on Twitter, such as peer-reviewed research articles. Most research articles were open access and available to the public but may not be accessible for a wide range of literacy levels.

For both platforms, prevention and risk reduction were main areas of focus in dementia research. Posts with these topics appeared the most frequently and received a lot of attention in the form of likes, shares, and comments.

Other popular topics included dementia treatment and research related to the detection of dementia. Treatment posts primarily discussed the approval of aducanumab1 by the Food and Drug Administration (FDA), leading to much online debate. This may explain why, at the time, non-academic users had more interactions on dementia treatment tweets. The purpose behind most posts was to share dementia research information and knowledge.

On risk, responsibility, and stigma

The posts in our social media data emphasized individual prevention efforts, such as diet and exercise. However, topics also included social and environmental barriers that interfere with dementia risk reduction, care, treatment delivery, and other research areas. 

As stated in one Facebook post, “[the] social determinants of health can significantly impact brain health disparities & the ability to access care.”

Barriers are unequally distributed across communities that vary by race, ethnicity, sex and gender, socioeconomic background, disability, and other aspects of identity.

Dementia researchers on social media should avoid using language that elicits stigma or equates brain health with personal responsibility (9). Society-wide initiatives that overcome barriers can potentially impact future population health on a broader scale positively and more effectively.

Image from Pixabay.

Practical social media guidance is needed for dementia research

A better understanding of the dementia research space on social media can inform future ethical guidelines. Dementia research engagement should incorporate the community’s values and perspectives on using social media for risk reduction.


1 The FDA approved aducanumab as a treatment for Alzheimer’s disease in June 2021. The decision was met with much controversy and ethical discussion. More information can be found here.

Access the full research paper here.

This work is supported by the Alzheimer’s Association Research Grant program (JMR), the Canadian Consortium on Neurodegeneration in Aging, AGE-WELL NCE Inc., a member of the Networks of Centres of Excellence program, and the University of British Columbia Four Year Doctoral Fellowship (VH).

References

  1. Livingston G, Huntley J, Sommerlad A, Ames D, Ballard C, Banerjee S, et al. Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. The Lancet. 2020 Aug 8;396(10248):413–46.
  2. Corey KL, McCurry MK, Sethares KA, Bourbonniere M, Hirschman KB, Meghani SH. Utilizing Internet-based recruitment and data collection to access different age groups of former family caregivers. Appl Nurs Res. 2018 Dec 1;44:82–7.
  3. Isaacson RS, Seifan A, Haddox CL, Mureb M, Rahman A, Scheyer O, et al. Using social media to disseminate education about Alzheimer’s prevention & treatment: a pilot study on Alzheimer’s universe (www.AlzU.org). J Commun Healthc. 2018;11(2):106–13.
  4. Friedman DB, Gibson A, Torres W, Irizarry J, Rodriguez J, Tang W, et al. Increasing Community Awareness About Alzheimer’s Disease in Puerto Rico Through Coffee Shop Education and Social Media. J Community Health. 2016 Oct;41(5):1006–12.
  5. Stout SH, Babulal GM, Johnson AM, Williams MM, Roe CM. Recruitment of African American and Non-Hispanic White Older Adults for Alzheimer Disease Research Via Traditional and Social Media: a Case Study. J Cross-Cult Gerontol. 2020 Sep 1;35(3):329–39.
  6. Bender JL, Cyr AB, Arbuckle L, Ferris LE. Ethics and Privacy Implications of Using the Internet and Social Media to Recruit Participants for Health Research: A Privacy-by-Design Framework for Online Recruitment. J Med Internet Res. 2017;19(4):e104.
  7. Gelinas L, Pierce R, Winkler S, Cohen IG, Lynch HF, Bierer BE. Using Social Media as a Research Recruitment Tool: Ethical Issues and Recommendations. Am J Bioeth. 2017 Mar 4;17(3):3–14.
  8. Hrincu V, An Z, Joseph K, Jiang YF, Robillard JM. Dementia Research on Facebook and Twitter: Current Practice and Challenges. J Alzheimers Dis. 2022 Jan 1; 1–13.
  9. Lawless M, Augoustinos M, LeCouteur A. “Your Brain Matters”: Issues of Risk and Responsibility in Online Dementia Prevention Information. Qual Health Res. 2018 Aug 1;28(10):1539–51.

Viorica Hrincu, MSc is doing her PhD in Experimental Medicine at the University of British Columbia in the Neuroscience Engagement and Smart Tech (NEST) lab.

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Brain wellness, genomic justice, and Indigenous communities: Supporting wellness and self-determination

COMMUNITY CONVERSATIONS

Thursday, June 9, 2022
4:00 PM – 5:30 PM PDT
Please register here for the Zoom details: https://ccbwic.eventbrite.ca

Join us for a conversation about supporting Indigenous peoples’ wellness and self-determination in the areas of genomics and brain wellness. Hear perspectives from Krystal Tsosie, co-founder of the first U.S. Indigenous-led biobank, and from members of a working group that convened this past fall to explore the meanings of brain wellness in an Indigenous health context. Our conversation will span topics including research and data sovereignty, intersections between genomic ethics and neuroethics, and uplifting community voices and perspectives. Come ready to learn and consider how our positionalities, lived experiences and cultures can impact the way we think and reason about ethics.

Panelists:
Krystal Tsosie, MPH, MA
Navajo Nation
PhD candidate, Genomics and Health Disparities
Vanderbilt University

Bryce Mercredi
Métis Nation
Elder

Cornelia (Nel) Wieman, MD, MSc, FRCPC
Anishinaabe (Little Grand Rapids First Nation)
Deputy Chief Medical Officer, First Nations Health Authority

Malcolm King, PhD, FCAHS
Mississaugas of the Credit First Nation
Professor, Community Health and Epidemiology
College of Medicine, University of Saskatchewan

Sekani Dakelth
Nak’azdli Nation
Community member and activist

Moderated by:
Louise Harding, BSc

MSc Student, School of Population and Public Health
Neuroethics Canada, University of British Columbia

We are grateful to the UBC W. Maurice Young Centre for Applied Ethics for providing funding for this event.