Using social media for health research: Methodological and ethical considerations for recruitment and intervention delivery

Danielle Arigo, Sherry Pagoto, Lisa Carter-Harris, Sarah E Lillie, Camille Nebeker, Danielle Arigo, Sherry Pagoto, Lisa Carter-Harris, Sarah E Lillie, Camille Nebeker

Abstract

As the popularity and diversity of social media platforms increases so does their utility for health research. Using social media for recruitment into clinical studies and/or delivering health behavior interventions may increase reach to a broader audience. However, evidence supporting the efficacy of these approaches is limited, and key questions remain with respect to optimal benchmarks, intervention development and methodology, participant engagement, informed consent, privacy, and data management. Little methodological guidance is available to researchers interested in using social media for health research. In this Tutorial, we summarize the content of the 2017 Society for Behavioral Medicine Pre-Conference Course entitled 'Using Social Media for Research,' at which the authors presented their experiences with methodological and ethical issues relating to social media-enabled research recruitment and intervention delivery. We identify common pitfalls and provide recommendations for recruitment and intervention via social media. We also discuss the ethical and responsible conduct of research using social media for each of these purposes.

Keywords: Digital health; Facebook; Twitter; health behavior change; research ethics; social media.

Figures

Figure 1.
Figure 1.
Example of well-crafted versus suboptimal tweet.
Figure 2.
Figure 2.
The CORE interface.

References

    1. Greenwood S, Perrin A and Duggan M. Social media update 2016: Facebook usage and engagement is on the rise, while adoption of other platforms holds steady. Pew Research Center. (2016, accessed 19 June 2017).
    1. Brown J, Kotz D, Michie S, et al. How effective and cost-effective was the national mass media smoking cessation campaign ‘Stoptober’? Drug Alcohol Depend 2014; 135: 52–58.
    1. Harris JK, Hawkins JB, Nguyen L, et al. Using Twitter to identify and respond to food poisoning: The Food Safety STL Project. J Public Health Manag Pract. Epub ahead of print 3 February 2017. DOI: 10.1097/PHH.0000000000000516.
    1. Paul MJ, Dredze M, Broniatowski D. Forcast the flu: Twitter improves influenza forecasting. PLoS Curr 2014; 6: pii.
    1. Frandsen M, Walters J, Ferguson SG. Exploring the viability of using online social media advertising as a recruitment method for smoking cessation clinical trials. Nicotine Tob Res 2014; 16: 247–251.
    1. Napolitano MA, Hayes S, Bennett GG, et al. Using Facebook and text messaging to deliver a weight loss program to college students. Obesity 2013; 21: 25–31.
    1. Pagoto SL, Waring ME, Schneider KL, et al. Twitter-delivered behavioral weight-loss interventions: a pilot series. JMIR Res Protoc 2015; 4: e123.
    1. Cavallo DN, Tate DF, Ries AV, et al. A social media–based physical activity intervention: a randomized controlled trial. Am J Prev Med 2012; 43: 527–532.
    1. Capurro D, Cole K, Echavarría MI, et al. The use of social networking sites for public health practice and research: a systematic review. J Med Internet Res 2014; 16: e79.
    1. Bull SS, Levine DK, Black SR, et al. Social media–delivered sexual health intervention: a cluster randomized controlled trial. Am J Prev Med 2012; 43: 467–474.
    1. Young SD, Cumberland WG, Lee SJ, et al. Social networking technologies as an emerging tool for HIV prevention: a cluster randomized trial. Ann Intern Med 2013; 159: 318–324.
    1. Cameron AM, Massie A, Alexander C, et al. Social media and organ donor registration: the Facebook effect. Am J Transplant 2013; 13: 2059–2065.
    1. Livingstone S. Taking risky opportunities in youthful content creation: Teenagers’ use of social networking sites for intimacy, privacy and self-expression. New Media Soc 2008; 10: 393–411.
    1. Maher CA, Lewis LK, Ferrar K, et al. Are health behavior change interventions that use online social networks effective? A systematic review. J Med Internet Res 2014; 16: e40.
    1. Shaw JM, Mitchell CA, Welch AJ, et al. Social media used as a health intervention in adolescent health: a systematic review of the literature. Digi Health 2015; 1: 1–10.
    1. Khatri C, Chapman SJ, Glasbey J, et al. Social media and internet driven study recruitment: evaluating a new model for promoting collaborator engagement and participation. PLoS One 2015; 10(3): e0118899.
    1. Grajales FJ, III, Sheps S, Ho K, et al. Social media: a review and tutorial of applications in medicine and health care. J Med Internet Res 2014; 16: e13.
    1. Ramo DE, Rodriguez TM, Chavez K, et al. Facebook recruitment of young adult smokers for a cessation trial: methods, metrics, and lessons learned. Internet Interv 2014; 1: 58–64.
    1. Graham AL, Milner P, Saul JE, et al. Online advertising as a public health and recruitment tool: comparison of different media campaigns to increase demand for smoking cessation interventions. J Med Internet Res 2008; 10: e50.
    1. Ramo DE, Hall SM, Prochaska JJ. Reaching young adult smokers through the internet: comparison of three recruitment mechanisms. Nicotine Tob Res 2010; 12: 768–775.
    1. Topolovec-Vranic J, Natarajan K. The use of social media in recruitment for medical research studies: a scoping review. J Med Internet Res 2016; 18: e286.
    1. Wang K, Wang ET, Farn CK. Influence of web advertising strategies, consumer goal-directedness, and consumer involvement on web advertising effectiveness. Int J Electronic Commerce 2009; 13: 67–96.
    1. King DB, O’Rourke N, DeLongis A. Social media recruitment and online data collection: a beginner’s guide and best practices for accessing low-prevalence and hard-to-reach populations. Can Psychol 2014; 55: 240–249.
    1. Lim MS, Vella A, Sacks-Davis R, et al. Young people’s comfort receiving sexual health information via social media and other sources. Int J STD AIDS 2014; 25: 1003–1008.
    1. Martinez O, Wu E, Shultz AZ, et al. Still a hard-to-reach population? Using social media to recruit Latino gay couples for an HIV intervention adaptation study. J Med Internet Res 2014; 16: e113.
    1. Fenner Y, Garland SM, Moore EE, et al. Web-based recruiting for health research using a social networking site: an exploratory study. J Med Internet Res 2012; 14: e20.
    1. Bonevski B, Randell M, Paul C, et al. Reaching the hard-to-reach: a systematic review of strategies for improving health and medical research with socially disadvantaged groups. BMC Med Res Methodol 2014; 14: 42.
    1. Leonard A, Hutchesson M, Patterson A, et al. Recruitment and retention of young women into nutrition research studies: practical considerations. Trials 2014; 15: 23.
    1. Patel MX, Doku V, Tennakoon L. Challenges in recruitment of research participants. Adv Psychiatr Treat 2003; 9: 229–238.
    1. Williams RJ, Tse T, DiPiazza K, et al. Terminated trials in the Results Database: evaluation of availability of primary outcome data and reasons for termination. PLoS One 2015; 10: e0127242.
    1. Carter-Harris L, Slaven JE, II, Monahan PO, et al. Understanding lung cancer screening behavior: racial, gender, and geographic differences among Indiana long-term smokers. Prev Med Rep 2018; 10: 49–54.
    1. Carter-Harris L, Ceppa DP, Hanna N, et al. Lung cancer screening: what do long-term smokers know and believe? Health Expect 2015; 20: 59–68.
    1. Carter-Harris L, Slaven J, Monahan PO, et al. Development and psychometric evaluation of the lung cancer screening health belief scales. Cancer Nurs 2017; 40: 237–244.
    1. Carter-Harris L, Bartlett Ellis R, Warrick A, et al. Beyond traditional newspaper recruitment: leveraging Facebook targeted advertisement to recruit long-term smokers for research. J Med Internet Res 2016; 18(6): e117.
    1. Carter-Harris L, Schwindt R, Bakoyannis G, et al. Current smokers’ preferences for receiving cessation information in a lung cancer screening setting. J Cancer Educ. Epub ahead of print 12 April 2017. DOI: 10.1007/s13187-017-1222-7.
    1. Arigo D, Smyth JM, Suls JM. Perceptions of similarity and response to selected comparison targets in type 2 diabetes. Psychol Health 2015; 30: 1206–1220.
    1. Konstan JA, Simon Rosser BR, Ross MW, et al. The story of subject naught: a cautionary but optimistic tale of Internet survey research. J Comput‐Mediat Comm 2005; 10: 00.
    1. O’Connor A, Jackson L, Goldsmith L, et al. Can I get a retweet please? Health research recruitment and the Twittersphere. J Adv Nurs 2014; 70: 599–609.
    1. Heath C, Heath D. Made to stick: why some ideas survive and others die, New York, NY: Random House, 2007.
    1. Castillo C, Mendoza M, and Poblete B. Information credibility on twitter. In: Proceedings of the 20th International Conference on World Wide Web, March 2011, pp. 675–684. Hyderabad, India: ACM.
    1. Ryan GS. Online social networks for patient involvement and recruitment in clinical research. Nurs Res 2013; 21: 35–39.
    1. Ruths D, Pfeffer J. Social media for large studies of behavior. Science 2014; 346: 1063–1064.
    1. Pagoto S, Waring ME, May CN, et al. Adapting behavioral interventions for social media delivery. J Med Internet Res 2016; 18: e24.
    1. Gold BC, Burke S, Pintauro S, et al. Weight loss on the web: a pilot study comparing a structured behavioral intervention to a commercial program. Obesity 2007; 15: 155–164.
    1. Hales S, Turner-McGrievy GM, Wilcox S, et al. Trading pounds for points: engagement and weight loss in a mobile health intervention. Digital Health 2017; 3: 1–9.
    1. Pagoto S, Olendzki E, Oleski J, et al. The feasibility of incentivizing participation in an online social network weight loss program. In: 50th Hawaii International Conference on System Sciences, HICSS 2017, Hawaii, USA, 4–7 January 2017. Paper available at . (2017, accessed 19 June 2017).
    1. Turner-McGrievy GM, Beets MW, Moore JB, et al. Comparison of traditional versus mobile app self-monitoring of physical activity and dietary intake among overweight adults participating in an mHealth weight loss program. J Am Med Inform Assoc 2013; 20: 513–518.
    1. Webber KH, Tate DF, Bowling JM. A randomized comparison of two motivationally enhanced Internet behavioral weight loss programs. Behav Res Ther 2008; 46: 1090–1095.
    1. Pagoto SL, Waring ME, Jake-Schoffman D, et al. What type of engagement predicts success in a Facebook weight loss group? In: Proceedings of the 50th Hawaii International Conference on System Sciences, HICSS 2018, Hawaii, USA 5–8 January 2018. Available at: . (2018, accessed 20 March 2018).
    1. Hales SB, Davidson C, Turner-McGrievy GM. Varying social media post types differentially impacts engagement in a behavioral weight loss intervention. Transl Behav Med 2014; 4: 355–362.
    1. Thrul J, Ramo DE. Cessation strategies young adult smokers use after participating in a Facebook intervention. Subst Use Misuse 2017; 52: 259–264.
    1. Rus HM, Cameron LD. Health communication in social media: message features predicting user engagement on diabetes-related Facebook pages. Ann Behav Med 2016; 50: 678–689.
    1. Strekalova YA, Krieger JL. A picture really is worth a thousand words: public engagement with the National Cancer Institute on social media. J Cancer Educ 2017; 32: 155–157.
    1. Pagoto S, Waring ME. A call for a science of engagement: Comment on Rus and Cameron. Ann Behav Med 2016; 50: 690–691.
    1. Turner-McGrievy GM, Tate DF. Weight loss social support in 140 characters or less: use of an online social network in a remotely delivered weight loss intervention. Transl Behav Med 2013; 3: 287–294.
    1. Forman EM, Schumacher LM, Crosby R, et al. Ecological momentary assessment of dietary lapses across behavioral weight loss treatment: characteristics, predictors, and relationships with weight change. Ann Behav Med. Epub ahead of print 9 March 2017. DOI: 10.1007/s12160-017-9897-x.
    1. Arigo D. Promoting physical activity among women using wearable technology and online social connectivity: a feasibility study. Health Psychol Behav Med 2015; 3: 391–409.
    1. Schumacher LM, Arigo D, Thomas C. Understanding physical activity lapses among women: responses to lapses and the potential buffering effect of social support. J Behav Med. Epub ahead of print 5 April 2017. DOI: 10.1007/s10865-017-9846-y.
    1. Kwon KH, Stefanone MA, Barnett GA. Social network influence on online behavioral choices: exploring group formation on social network sites. Am Behav Scientist 2014; 58: 1345–1360.
    1. Uski S, Lampinen A. Social norms and self-presentation on social network sites: profile work in action. New Media Soc 2016; 18: 447–464.
    1. Arigo D, Suls JM, Smyth JM. Social comparisons and chronic illness: research synthesis and clinical implications. Health Psychol Rev 2014; 8: 154–214.
    1. Eagly AH. Sex differences in social behavior: a social-role interpretation, Hove, East Sussex: Psychology Press, 2013.
    1. Uchino BN, Carlisle M, Birmingham W, et al. Social support and the reactivity hypothesis: conceptual issues in examining the efficacy of received support during acute psychological stress. Biol Psychol 2011; 86: 137–142.
    1. Arigo D, Schumacher LM, Pinkasavage E, et al. Addressing barriers to physical activity among women: A feasibility study using social networking-enabled technology. Digital Health 2015, pp. 1–12.
    1. Nebeker C, Linares-Orozco M, Crist K. A multi-case study of research using mobile imaging, sensing and tracking technologies to objectively measure behavior: ethical issues and insights to guide responsible research practice. J Res Adm 2015; 46: 118–137.
    1. Nebeker C, Lagare T, Takemoto M, et al. Engaging research participants to inform the ethical conduct of mobile imaging, pervasive sensing, and location tracking research. Transl Behav Med 2016; 6: 577–586.
    1. Gelinas L, Pierce R, Winkler S, et al. Using social media as a research recruitment tool: ethical issues and recommendations. Am J Bioethics 2017; 17(3): 3–14.
    1. Hewson C, Buchanan T, Brown I, et al. Ethics guidelines for Internet-mediated research. Leicester, UK: The British Psychological Society, (accessed 11 January 2018).
    1. National Institute for Health Research. INVOLVE. Southampton, UK: INVOLVE, (2015, accessed 6 February 2017).
    1. Torous J, Nebeker C. Navigating ethics in the digital age: introducing Connected and Open Research Ethics (CORE), a tool for researchers and institutional review boards. J Med Internet Res 2017; 19: e38.
    1. Fisher J, Clayton M. Who gives a tweet: assessing patients’ interest in the use of social media for health care. Worldviews Evid Based Nurs 2012; 9: 100–108.
    1. Moorhead SA, Hazlett DE, Harrison L, et al. A new dimension of health care: systematic review of the uses, benefits, and limitations of social media for health communication. J Med Internet Res 2013; 1(5): e85.
    1. Madden M. Privacy management on social media sites. Pew Research Center. (2012, accessed 19 June 2017).
    1. Carter-Harris L, Ellis RB, Warrick A, et al. Beyond traditional newspaper advertisement: leveraging Facebook-targeted advertisement to recruit long-term smokers for research. J Med Internet Res 2016; 18: e117.
    1. Nebeker C, Harlow J, Espinoza Giacinto R, et al. Ethical and regulatory challenges of research using pervasive sensing and other emerging technologies: IRB perspectives. AJOB Empirical Bioethics 2017; 8(4): 266–276.
    1. Nebeker C, Murray K, Holub C, et al. Acceptance of mobile health in communities underrepresented in biomedical research: barriers and ethical considerations for scientists. JMIR Mhealth Uhealth 2017; 5: e87.

Source: PubMed

Sponsorer og samarbejdspartnere

Medicinske tilstande

Narkotikainterventioner

3
Abonner