Save your outrage: online cancer fakers may be suffering a different kind of illness

Peter Bath, University of Sheffield and Julie Ellis, University of Sheffield

Trust is very important in medicine. Increasing numbers of people are using the internet to manage their health by looking for facts about specific illnesses and treatments available. And patients, their carers and the public in general need to trust that this information is accurate, reliable and up to date.

Alongside factual health websites, the internet offers discussion forums, personal blogs and social media for people to access anecdotal information, support and advice from other patients. Individuals share their own experiences, feelings and emotions about their illnesses online. They develop relationships and friendships, particularly with people who have been through illnesses themselves and can empathise with them.

Some health professionals have concerns about the quality of medical information on the internet. But others are advocating that patients should be more empowered and encourage people to use these online communities to share information and experiences.

Within these virtual communities, people don’t just have to trust that the medical information they encounter is factually correct. They are also placing trust in the other users they encounter online. This is the case whether they are sharing their own, often personal, information or reading about the personal experiences of others.

Darker side to sharing

While online sharing can be very beneficial to patients, there is also a potentially darker side. There have been widely-publicised cases of “patients” posting information about themselves that is, at best, factually incorrect and might be considered deliberately deceptive.

Blogger Belle Gibson built a huge following after writing about being diagnosed with a brain tumour at the age of 20 and the experience of having just months to live. She blogged about her illness, treatment, recovery and eventual relapse while developing and marketing a mobile phone app, a website and a book. Through all of this she advocated diet and lifestyle changes over conventional medicine, claiming this approach been key to her survival.

But Gibson’s stories were later revealed to be part of a tangled web of deceit, which also involved her promising to donate money to charities but, allegedly, never delivering the payments.

In one sense, people’s trust was broken when they realised they had paid money under false pretences. In another sense, they may have followed Gibson’s supposed example of halting prescribed treatments and adopting a new diet and lifestyle when there was no real evidence this would work. But, at a deeper level, people may feel betrayed because they sympathised and indeed empathised with a person who was later revealed to be a fraud.

The truth was eventually publicised by online news outlets and Gibson was subject to complaints and abuse on social media. But there is something about the anonymity of the internet that facilitates this kind of deceptive behaviour in the first place. People are far less likely to be taken in by this sort of thing in the real world, but they are online. And it destroys people’s trust in online resources across the board.

Trust in extreme circumstances

Despite this, the moral outrage generated online by this kind of extreme and relatively isolated incident may be misplaced. There is evidence to suggest that people who do this may actually be ill but it’s a very difference sort of illness.

Faking diseases or illnesses – often described as Munchausen’s syndrome – is not unique to the internet and was reported long before its advent. The Roman physician Galen is credited with being the first to identify occasions on which people lied about or induced symptoms in order to simulate illness. More recently, the term “Munchausen by internet” has been used to describe behaviour in which people use chat rooms, blogs and forums to post false information about themselves to gain sympathy, trust or to control others.

Whichever way we view people who post such false information, their behaviour raises the question why people with genuine illnesses still share such intimate details when the potential for dishonesty from others is so evident. Our new research project, “A Shared Space and a Space for Sharing”, led by the University of Sheffield, is trying to understand how trust works in online spaces among people in extreme circumstances, such as the terminally ill.

We need to know why people trust and share so much with others when they have never met them and when there is so much potential for deceit and abuse. It is also important to identify people who fake illness online if we are to ensure there is public trust in genuine online support platforms.

Peter Bath, Professor of Health Informatics, University of Sheffield and Julie Ellis, Research associate, University of Sheffield

This article was originally published on The Conversation. Read the original article.

Book review: The SAGE Handbook of Social Media Research Methods

Charlotte Saunders is a Research Analyst at NatCen Social Research and the newest member of the NSMNSS team!

She works on quantitative and secondary analysis projects across a range of policy areas. Previously, Charlotte spent three years working for Ipsos MORI on a variety of qualitative and quantitative projects. Most recently she spent several months with VSO in Tanzania managing teams of young volunteers working in secondary schools. Charlotte holds an MSc in Public Health from the London School of Hygiene and Tropical Medicine. Her research project there looked at inequalities in access to clean water and sanitation in South America. 

In the past decade social media has transformed many aspects of our lives. It has revolutionised the way we communicate and the widespread adoption of mobile devices means its impact on everyday life continues to grow. As social researchers, we know that social media opens up huge new reserves of naturally occurring data for us to play with. The large volume of data produced is a goldmine for quantitative researchers; the opportunities provided by big data are well documented. But there are also new prospects in qualitative research, with new sources of ‘thick data’ which help us to understand the stories, emotions and worldviews behind the numbers.

Despite all these possibilities, many of us don’t know how to take advantage of them. There are lots of things to consider; from the technical knowledge required to access and store the data to the potential ethical issues involved in using people’s data for research without first asking their permission. The SAGE Handbook of Social Media Research Methods promises to guide researchers through the whole process - from research design and ethical issues, data collection and storage through to analysis and interpretation.

The editors, Luke Sloan (Senior Lecturer at Cardiff University and Deputy Director of the Social Data Science Lab) and Anabel Quan-Haase (Associate Professor of Information and Media Studies and Sociology at the University of Western Ontario) have compiled chapters which cover the whole research process. Discussions of the limitations of naturally occurring data from social media, and some of the techniques that can be used to overcome them are practical and guide the researcher through the issues clearly. The chapters outlining the history, structure and demographics of some less common social media platforms give a good basic overview for those who rarely stray away from Facebook or Twitter.

Overall this is a helpful guide to research using social media. The ethics discussions outline the key issues that researchers need to consider. There are also clear step-by-step guides which walk researchers through some of the technical processes needed to engage with social media sites. Simon Hegelich’s chapter “R for Social Media Analysis” is a good example; simple and easy to follow, Hegelich takes the reader through a simple project analysing and visualising data from Twitter using the free software programming language R.

Most of the book is well written and easy to follow although some chapters are less accessible and require significant existing knowledge. These chapters are likely to be valuable for experienced researchers looking to transfer their knowledge to a social media setting, but students and junior researchers may well find themselves scouring the internet for definitions and context.

Social Media Research Methods fulfils its aim to allow researchers to “apply and tailor the various methodologies to their own research questions”.  The step-by-step guides are logical and easy to follow and the case studies demonstrate how methods can be used in real research. For those with a good existing understanding of the research methodologies and techniques in their field this is an invaluable text opening up the social media research world. Those with less experience will probably need to refer to other resources to get up to speed with some chapters, but even then this is a useful addition to any social research library.

The SAGE Handbook of Social Media Research Methods is available to purchase here.