Horizon CDT Research Highlights

Research Highlights

Exploring Institutional Privacy Concerns of Patients using Online Health Communities

  Kate Green (2016 cohort)   kategreen28.org

Today there are over 300,000 people in the UK living with Inflammatory Bowel Disease (IBD) in the form of either Crohn’s Disease or Ulcerative Colitis [1], and there is a further 1,500,000 patients living in the USA [2]. IBD is a lifelong, incurable illness that causes patients to suffer with unpredictable inflammation in their digestive tract [1,3,4]. Stigmatising symptoms include, but are not limited to diarrhoea, abdominal pain, fatigue and nausea [1,2,3,4]. There is no one treatment and often patients undergo a range of medications and procedures, including surgery, to reduce inflammation and symptoms. It is an illness that impacts on all areas of life from work to intimate relationships with people often feeling alone in their battle [5].

Internet technologies, namely social media platforms, have helped connect thousands of people all over the world with chronic illnesses like IBD. Patients seek informational and emotional support, researching and coming to understand how to live with the illness [6,7]. However conversations that would once take place in purpose built forums such as crohnsforum.com are migrating towards more commonly used social media platforms such as Facebook, Twitter and Instagram. These platforms are fundamentally not designed to host conversations around health, but have been adapted to suit user needs.

Social media platforms’ business model relies on the aggregation, processing and selling of user data to partner companies including Experian [8] and to advertising companies. While many users are aware of targeted advertising [9] there is a lot uncertainty over what companies do with their data [9]. It has been examined that he majority of social media users do not read the Terms and Conditions prior to accepting them [10,11] and many are left with optimistic and naive expectations of how companies process and use their data [11]. Digital economy researchers warn of the uncertainties over how algorithms may impact people’s real life and potentially cause harm [12]. For patients who share sensitive information about their health, they are more vulnerable to the outcomes of surveillance capitalism [18].

My PhD research is two-fold: while there has been ample research in how web-based forums have been used by support groups [13,14,15,16], there is little knowledge in how patients leverage contemporary social media platforms for informational and emotional support. Secondly, my research also examines patients’ perceptions of who can see the information they post about their health and what the social media platforms may do with this data.

My first exploratory study, when I interviewed 38 members from the IBD community spanning across Facebook, Instagram and Twitter, explored how patients use the functionality of each technology to suit their needs according to the SCENA Model of Affordances in Social Media [17]. Comprehensive thematic analysis indicated that connectivity functions underpin many of the therapeutic outcomes of engaging with online health communities; however, character limits and privacy settings play an important role in self-presentation and disclosure. The second arm of the study was to better understand how patients perceive notions of social and institutional privacy. Participants demonstrated a strong understanding of social privacy, describing their preferences and behaviours to mitigate risks that they perceive. Understanding of the digital economy was mixed, ranging from little or no understanding, to the recognition of advertising, with a small number of specialists (who work in online advertising and cybersecurity) who were much more data literate. Despite the mixed understanding, the findings suggest that patients perceive there is much more to benefit from self-disclosing health information on social media than risks.

While patients clearly care about privacy, the mixed attitudes and behaviours towards institutional privacy warrants further exploration. With the rapidly changing landscape of privacy protections with an increased number of media articles, the next study will explore the concerns shared by charities that host support groups on contemporary social media platforms. These findings, coupled with patient concerns will inform an intervention to increase awareness to patients while simulatenously providing them with tools to mitigate some of the risks.


[1] Crohn’s and Colitis UK. (n.d.). About Inflammatory Bowel Disease. Retrieved online: https://www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease [2] Crohn’s and Colitis Foundation of America. (2017). What are Crohn’s and Colitis? Retrieved from http://www.ccfa.org/what-are-crohns-and-colitis/

[3] Crohn’s and Colitis UK. (2017). Crohn’s Disease: Your Guide. Retrieved from http://s3-eu-west-1.amazonaws.com/files.crohnsandcolitis.org.uk/Publications/crohns-disease.pdf

[4]Crohn’s and Colitis UK. (2017). Ulcerative Colitis: Your Guide. Retrieved from http://s3-eu-west-1.amazonaws.com/files.crohnsandcolitis.org.uk/Publications/ulcerative-colitis.pdf

[5] Crohn’s and Colitis UK. (2014). Living With IBD. Retrieved from http://s3-eu-west-1.amazonaws.com/files.crohnsandcolitis.org.uk/Publications/living-with-IBD.pdf

[6] Coulson, N. (2013). How do online patient support communities affect the experience of inflammatory bowel disease? An Online Survey. The Royal Society of Medicine.

[7] Leung, L. (2007). Stressful Life Events, Motives for Internet Use, and Social Support Among Digital Kids. Cyber Psychology and Behaviour, Vol 10.

[8] https://www.experian.com/assets/marketing-services/product-sheets/fb-exp-product-sheet-aug-2016.pdf 8

[9] Miller, C. (2018). People, Power and Technology: The 2018 Digital Attitudes Report. DotEveryone.

[10] Debatin, B., & Lovejoy, J. P. (2009). Facebook and Online Privacy?: Attitudes , Behaviors , and Unintended Consequences, 15, 83–108. https://doi.org/10.1111/j.1083-6101.2009.01494.x

[11] Rao, A., Schaub, F., Sadeh, N., Acquisti, A., & Kang, R. (2016). Expecting the Unexpected: Understanding Mismatched Privacy Expectations Online. In the Proceedings of the Twelfth Symposium on Usable Privacy and Security (SOUPS 2016) (pp. 77–96). Retrieved from https://www.usenix.org/conference/soups2016/technical-sessions/presentation/rao

[12] Crawford, K., Schultz, J. (2014). Big Data and Due Process: Toward a Framework to Redress Predictive Privacy Harms. Boston College Law Review.

[13] Wang, C., Zhao, K., & Street, N. (2017). Analyzing and Predicting User Participations in Online Health Communities: A Social Support Perspective. Journal of Medical Internet Research.

[14] Moore, D., Ayers, S., & Drey, N. A Thematic Analysis of Stigma and Disclosure for Perinatal Depression on an Online Forum. JMIR Mental Health

[15] Coulson, N. S. (2005). Receiving social support online: An analysis of a computer-mediated support group for individuals living with irritable bowel syndrome. Cyberpsychology and Behavior, 8(6), 580–584. Retrieved from http://www.embase.com/search/results?subaction=viewrecord&from=export&id=L43011136 http://dx.doi.org/10.1089/cpb.2005.8.580 http://findit.library.jhu.edu/resolve?sid=EMBASE&issn=10949313&id=doi:10.1089%2Fcpb.2005.8.580&atitle=Receiving+social+support+onli

[16] Holbrey, S., & Coulson, N. S. (2013). A qualitative investigation of the impact of peer to peer online support for women living with polycystic ovary syndrome. BMC Women’s Health, 13(1), 51. https://doi.org/10.1186/1472-6874-13-51

[17] Merolli, M., Gray, K., & Martin-Sanchez, F. (2014). Therapeutic affordances of social media: Emergent themes from a global online survey of people with chronic pain. Journal of Medical Internet Research, 16(12), e284. https://doi.org/10.2196/jmir.3494

[18] Zuboff, S. (2015) Big other: surveillance capitalism and the prospects of an information civilization. Journal of Information Technology (2015) 30, 75–89.

This author is supported by the Horizon Centre for Doctoral Training at the University of Nottingham (RCUK Grant No. EP/L015463/1) and Open Lab, Newcastle University.