Horizon CDT Research Highlights

Research Highlights

"You won’t go graphic on Twitter whereas in the forums you will." How the Inflammatory Bowel Disease community discloses health information across contemporary social platforms.

  Kate Green (2016 cohort)   www.nottingham.ac.uk/~psxkg1

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].

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.

I am currently undertaking my first study where I am interviewing members of the IBD community from across different social platforms on the Internet: forums, Facebook, Twitter and Instagram. This study questions how patients use these platforms; how they leverage different platforms for different reasons; and, what they disclose about their health. Its secondary aim is to begin to understand patient’s attitudes towards audience management and privacy behaviours. I am conducting thematic analysis on the semi-structured interview transcriptions and have already found some interesting results.

Early analysis suggests that notions of information seeking, information sharing, validation, empathy, affection, sense of community, awareness raising, fund raising and humour are all present between the different platforms. Patients often post about their IBD across different accounts, but focus on one platform for the majority of their support. Patients advocates and bloggers, however, prolifically use different platforms to reach different audiences; their posts are typically open and public in their nature while other patients may be more cautious about where they post and what about. With regards to privacy attitudes and behaviours, the 16 out of the 17 interviewees to date did not read the terms and conditions of the social media platforms prior to signing up; however, when asked 10 out of 17 were uncomfortable with commercial entities accessing and using information they have posted about their health, 3 patients mentioned that they are particularly uncomfortable if it is done without informed consent. 5 patients have said they are comfortable with companies using this information provided it would directly support patients in some way.

Further recruitment and analysis will be undertaken throughout 2018 before deciding the direction of the next study that will be much more focused on user preferences over their privacy.


[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

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 .