Health Forums and Twitter for Dementia Research: Opportunities and Considerations.
Alzheimerʼs disease
Twitter
caregiving
dementia
online health forum
social media
Journal
Journal of the American Geriatrics Society
ISSN: 1532-5415
Titre abrégé: J Am Geriatr Soc
Pays: United States
ID NLM: 7503062
Informations de publication
Date de publication:
12 2020
12 2020
Historique:
received:
16
04
2020
revised:
24
07
2020
accepted:
27
07
2020
pubmed:
8
9
2020
medline:
19
3
2021
entrez:
7
9
2020
Statut:
ppublish
Résumé
Social media platforms are promising sources for large quantities of participant-driven research data and circumvent some common challenges when conducting dementia research. This study provides a summary of key considerations and recommendations about using these platforms as research tools for dementia. Mixed methods. Alzheimer's Society's online Dementia Talking Point forum from inception to April 17, 2018, and Twitter in February and March 2018. All users of Dementia Talking Point who posted in subforums labeled "I have dementia" and "I care for a person with dementia," and Twitter users whose posts contained the keywords "dementia," "Alzheimer," or "Alzheimer's." We quantified the average daily number of dementia-related posts on each platform and number of words per post. Guided by a codebook, we conducted thematic content analysis of 5% of the 15,513 posts collected from Dementia Talking Point, and 10% of the 25,948 comprehensible posts from Twitter containing "dementia," "Alzheimer," or "Alzheimer's." We also summarized research-relevant characteristics inherent to platforms and posts. On average, Dementia Talking Point provided less than two new daily dementia-related posts with 213.5 to 241.5 words, compared with 7,883 new daily Twitter posts with 14.5 words. Persons with dementia (PWDs) commonly shared dementia-related concerns (75.7%), experiences (68.6%), and requests for, as well as offers of, information and support (44.3% and 38.6%, respectively). Caregivers commonly shared caregiving experience (67.0%) and requests for information and support (52.5%). Most common dementia-related Twitter posts were derogatory use of the term dementia (14.5%), advocacy, fundraising, and awareness (11.6%), and research dissemination (8.0%). Recommendations about these platforms' unique technical and ethical considerations are outlined. Understanding the priorities of PWDs and their caregivers remains important to understand how clinicians can best support them. This study will help clinicians and researcher to better leverage online health forums and Twitter for such dementia-related information.
Sections du résumé
BACKGROUND/OBJECTIVES
Social media platforms are promising sources for large quantities of participant-driven research data and circumvent some common challenges when conducting dementia research. This study provides a summary of key considerations and recommendations about using these platforms as research tools for dementia.
DESIGN
Mixed methods.
SETTING
Alzheimer's Society's online Dementia Talking Point forum from inception to April 17, 2018, and Twitter in February and March 2018.
PARTICIPANTS
All users of Dementia Talking Point who posted in subforums labeled "I have dementia" and "I care for a person with dementia," and Twitter users whose posts contained the keywords "dementia," "Alzheimer," or "Alzheimer's."
MEASUREMENTS
We quantified the average daily number of dementia-related posts on each platform and number of words per post. Guided by a codebook, we conducted thematic content analysis of 5% of the 15,513 posts collected from Dementia Talking Point, and 10% of the 25,948 comprehensible posts from Twitter containing "dementia," "Alzheimer," or "Alzheimer's." We also summarized research-relevant characteristics inherent to platforms and posts.
RESULTS
On average, Dementia Talking Point provided less than two new daily dementia-related posts with 213.5 to 241.5 words, compared with 7,883 new daily Twitter posts with 14.5 words. Persons with dementia (PWDs) commonly shared dementia-related concerns (75.7%), experiences (68.6%), and requests for, as well as offers of, information and support (44.3% and 38.6%, respectively). Caregivers commonly shared caregiving experience (67.0%) and requests for information and support (52.5%). Most common dementia-related Twitter posts were derogatory use of the term dementia (14.5%), advocacy, fundraising, and awareness (11.6%), and research dissemination (8.0%). Recommendations about these platforms' unique technical and ethical considerations are outlined.
CONCLUSIONS
Understanding the priorities of PWDs and their caregivers remains important to understand how clinicians can best support them. This study will help clinicians and researcher to better leverage online health forums and Twitter for such dementia-related information.
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
2881-2889Informations de copyright
© 2020 The American Geriatrics Society.
Références
World Health Organization. 10 Facts on dementia. https://www.who.int/features/factfiles/dementia/en/. Published 2017. Accessed January 16, 2019.
Waite J, Poland F, Charlesworth G. Facilitators and barriers to co-research by people with dementia and academic researchers: findings from a qualitative study. Health Expect. 2019;22(4):761-771. https://doi.org/10.1111/hex.12891.
Taylor JS, DeMers SM, Vig EK, Borson S. The disappearing subject: exclusion of people with cognitive impairment and dementia from geriatrics research. J Am Geriatr Soc. 2012;60(3):416-419. https://doi.org/10.1111/j.1532-5415.2011.03847.x.
McKeown J, Clarke A, Ingleton C, Repper J. Actively involving people with dementia in qualitative research. J Clin Nurs. 2010;19(13-14):1935-1943. https://doi.org/10.1111/j.1365-2702.2009.03136.x.
Gove D, Diaz-Ponce A, Georges J, et al. Alzheimer Europeʼs position on involving people with dementia in research through PPI (patient and public involvement). Aging Ment Health. 2017;22(6):723-729. https://doi.org/10.1080/13607863.2017.1317334.
Rivett E. Research involving people with dementia: a literature review. Work Older People. 2017;21(2):107-114. https://doi.org/10.1108/WWOP-11-2016-0033.
Lepore M, Hughes S, Wiener JM, Gould E. Including people with dementia and their caregivers as co-researchers in studies of dementia care and services. Research Summit on Dementia Care. Building Evidence for Services and Supports. 2017. https://aspe.hhs.gov/system/files/pdf/256676/Session%203%20Background.pdf. Accessed June 17, 2020.
Hamm MP, Chisholm A, Shulhan J, et al. Social media use among patients and caregivers: a scoping review. BMJ Open. 2013;3(5):e002819. https://doi.org/10.1136/bmjopen-2013-002819.
Taylor J, Pagliari C. The social dynamics of lung cancer talk on Twitter, Facebook and Macmillan.org.uk. NPJ Digit Med. 2019;2:51. https://doi.org/10.1038/s41746-019-0124-y.
Taylor J, Pagliari C. Comprehensive scoping review of health research using social media data. BMJ Open. 2018;8:e022931. https://doi.org/10.1136/bmjopen-2018-022931.
Sinnenberg L, Buttenheim AM, Padrez K, Mancheno C, Ungar L, Merchant RM. Twitter as a tool for health research: a systematic review. Am J Public Health. 2017;107(1):e1-e8. https://doi.org/10.2105/AJPH.2016.303512.
Chary M, Genes N, Giraud-Carrier C, Hanson C, Nelson LS, Manini AF. Epidemiology from tweets: estimating misuse of prescription opioids in the USA from social media. J Med Toxicol. 2017;13:278-286. https://doi.org/10.1007/s13181-017-0625-5.
Franz D, Marsh HE, Chen JI, Teo AR. Using Facebook for qualitative research: a brief primer. J Med Internet Res. 2019;21(8):e13544. https://doi.org/10.2196/13544.
Rodriquez J. Narrating dementia: self and community in an online forum. Qual Health Res. 2013;23(9):1215-1227. https://doi.org/10.1177/1049732313501725.
Scharett E, Chalil Madathil K, Lopes S, et al. An investigation of the information sought by caregivers of Alzheimerʼ s patients on online peer support groups. Cyberpsychol Behav Soc Netw. 2017;20(10):640-657. https://doi.org/10.1089/cyber.2017.0274.
Talbot C, Dwyer SO, Clare L, Heaton J, Anderson J. Identifying people with dementia on Twitter. Dementia. 2018;0(0):1-10. https://doi.org/10.1177/1471301218792122.
Robillard JM, Johnson TW, Hennessey C, Beattie BL, Illes J. Aging 2.0: health information about dementia on Twitter. PLoS One. 2013;8(7):1-5. https://doi.org/10.1371/journal.pone.0069861.
Cheng TY, Liu L, Woo BKP. Analyzing twitter as a platform for Alzheimer-related dementia awareness: thematic analyses of tweets. JMIR Aging. 2018;1(2):e11542. https://doi.org/10.2196/11542.
Tsoi KKF, Chan NB, Chan FCH, Zhang L, Lee ACH, Meng HML. How can we better use Twitter to find a person who got lost due to dementia? NPJ Digit Med. 2018;14:1-9. https://doi.org/10.1038/s41746-018-0017-5.
Danilovich MK, Tsay J, Al-bahrani R, Choudhary A, Agrawal A. #Alzheimerʼs and dementia. Top Geriatr Rehabil. 2018;34(1):48-53. https://doi.org/10.1097/TGR.0000000000000173.
Alzheimerʼs Society. Dementia Talking Point forum. https://forum.alzheimers.org.uk. Accessed August 23, 2020.
Alzheimerʼs Society Canada. Dementia discussion forums. https://alzheimer.ca/en/Home/We-can-help/Alzheimer-society-message-board. Published 2019. Accessed May 30, 2020.
Treato. The top five Alzheimerʼs online communities: Treato ranks top forums to help patients and caregivers navigate complex digital support landscape. https://www.prnewswire.com/news-releases/the-top-five-alzheimers-online-communities-treato-ranks-top-forums-to-help-patients-and-caregivers-navigate-complex-digital-support-landscape-300184889.html. Published 2015. Accessed May 30, 2020.
Octoparse Data Inc. Octoparse. https://www.octoparse.com. Accessed April 1, 2018.
Twitter Inc. Developer policy and terms documents. https://developer.twitter.com/en/docs.html. Published 2017. Accessed February 19, 2018.
Twitter Inc. Developer policy. https://developer.twitter.com/en/developer-terms/policy.html. Published 2017. Accessed February 19, 2018.
Statista. Number of monthly active Twitter users worldwide from 1st quarter 2010 to 1st quarter 2019. https://www.statista.com/statistics/282087/number-of-monthly-active-twitter-users/. Published 2019. Accessed August 14, 2019.
Hartigan J, Wong M. Algorithm AS 136: a K-means clustering algorithm. J R Stat Soc Ser C Appl Stat. 1979;28(1):100-108.
Atefeh F, Khreich W. A survey of techniques for event detection in Twitter. Comput Intell. 2015;31(1):132-164.
Vaismoradi M, Turunen H, Bondas T. Content analysis and thematic analysis: implications for conducting a qualitative descriptive study. Nurs Heal Sci. 2013;15:398-405. https://doi.org/10.1111/nhs.12048.
Markham A Buchanan E. Ethical decision-making and internet research: recommendations from the AoIR Ethics Working Committeee (version 2.0). Https://Aoir.Org/Reports/Ethics2.Pdf. Published December 2012. Accessed May 27, 2020.
Association of Internet Researchers. Internet research: ethical guidelines 3.0. https://aoir.org/reports/ethics3.pdf. Published October 6, 2019. Accessed May 27, 2020.
Myslin M, Zhu S, Chapman W, Conway M. Using Twitter to examine smoking behavior and perceptions of emerging tobacco products. J Med Internet Res. 2013;15(8):e174. https://doi.org/10.2196/jmir.2534.
Hawkins JB, Brownstein JS, Tuli G, et al. Measuring patient-perceived quality of care in US hospitals using Twitter. BMJ Qual Saf. 2015;25:404-413. https://doi.org/10.1136/bmjqs-2015-004309.
Chiauzzi E, Wicks P. Digital trespass: ethical and terms-of-use violations by researchers accessing data from an online patient community. J Med Internet Res. 2019;21(2):e11985. https://doi.org/10.2196/11985.
Council for International Organizations of Medical Sciences. International ethical guidelines for health-related research involving humans. https://cioms.ch/wp-content/uploads/2017/01/WEB-CIOMS-EthicalGuidelines.pdf. Published 2016. Accessed March 15, 2019.
Golder S, Ahmed S, Norman G, Booth A. Attitudes toward the ethics of research using social media: a systematic review. J Med Internet Res. 2017;19(6):e195. https://doi.org/10.2196/jmir.7082.
Zook M, Barocas S, Boyd D, et al. Ten simple rules for responsible big data research. PLoS Comput Biol. 2017;13(3):e1005399. https://doi.org/10.1371/journal.pcbi.1005399.
Conway M, Connor DO. Social media, big data, and mental health: current advances and ethical implications. Curr Opin Psychol. 2016;9:77-82. https://doi.org/10.1016/j.copsyc.2016.01.004.
Scottish Dementia Working Group Research Sub-Group. Core principles for involving people with dementia in research: innovative practice. Dementia. 2014;13(5):680-685. https://doi.org/10.1177/1471301214533255.
Lepore M, Shuman SB, Wiener JM, Gould E. Challenges in involving people with dementia as study participants in research on care and services. https://aspe.hhs.gov/basic-report/challenges-involving-people-dementia-study-participants-research-care-and-services. Published 2017. Accessed October 15, 2019.
Culotta A, Ravi NK, Cutler J. Predicting Twitter user demographics using distant supervision from website traffic data. J Artif Intell Res. 2016;55:389-408.
Eysenbach G, Till JE. Ethical issues in qualitative research on internet communities. BMJ. 2001;323(1):1103-1105.
Kim AE, Hansen HM, Murphy J, Richards AK, Duke J, Allen JA. Methodological considerations in analyzing Twitter data. J Natl Cancer Inst Monogr. 2013;2013(47):140-146. https://doi.org/10.1093/jncimonographs/lgt026.